Brighton Journal of Research in Health Sciences

Supporting Research in the School of Health Sciences


How to Improve Knowledge Translation in Stroke Rehabilitation: A View from Occupational Therapy Practice



The study explores the experience and views of occupational therapists in stroke rehabilitation regarding knowledge translation. The apparent knowledge translation gap is described as the delay of use of research evidence into clinical practice.


A qualitative, descriptive research design was used. The verbatim transcripts of the interviews with special section neurology practice (SSNP) occupational therapists were coded and analyzed using thematic analysis.


The themes identified included 1) how occupational therapists responded to change, 2) how knowledge translation barriers could be seen as learning needs and may lead to empowerment, 3) the use of knowledge translation strategies and professional body support.


Knowledge translation barriers need to be identified in each single environment in order to recommend solutions. To improve knowledge translation training is needed in time management, coping strategies, assistance through supervision and managerial involvement to prevent workplace burn out.  Personal initiatives must become natural, and networking similar to ‘communities of practice’ may keep healthcare professionals ahead of change. Learning needs appear to exist for clinicians and researchers., and improving knowledge translation in the future lies in personal initiative, innovation and involvement.


Graham (2006) highlighted that new developments in health research are often a delayed and the process is uncoordinated, resulting in patients not receiving the optimum interventions due to the late transfer of new knowledge into practice. The definition of knowledge translation (KT) by the World Health Organization (WHO, 2005) is “the synthesis, exchange and application of knowledge by relevant stakeholders to accelerate the benefits of global and local innovation in strengthening health systems and improving people’s health”. Knowledge translation in other words is the bridge between discovery and impact of evidence (Tetroe, 2008) and, as it has developed, it has been adopted by nursing, medicine and public health. The word knowledge used in the KT context means primarily scientific research (Graham, 2006).

Literature Review

Evidence- Based Practice       

“Evidence-based practice (EBP) is essentially a clinical decision making framework that encourages clinicians to integrate information from high quality quantitative and qualitative research with the clinician’s clinical expertise and the client’s background, preferences and values when making decisions” (Sackett et al. 1996, p. 71). Evidence-Based Practice (EBP) is seen as an essential part of the day to day work of occupational therapists (OT) and other health professionals.

 The results from a multidisciplinary team study by Humphries et al. (2000) suggested that occupational therapists want to base their practice on research outcomes but find the ever-growing amount of evidence difficult to manage. Additionally, they highlighted time restrictions, workload pressures and staff shortages as barriers to evidence-based practice. Over a decade later similar factors remain on the list of barriers (Menon et al., 2010; McCluskey et al., 2013). Therefore, for EBP to work the theory-practice gap has to be bridged by developing KT strategies (Graham, 2006).

 KT and EBP

KT has developed immensely over the last twenty years (Grimshaw et al., 2012) to translate evidence into practice.  Kielhofner (2005) explored the vast field of stakeholders involved in KT and suggested that more cooperation and teamwork between researchers and clinicians would facilitate more effective KT. Bayley et al. (2012) recommended that guideline developers set priorities in the way they transfer evidence into guidelines and employ easy to use language.

Jansen et al. (2012) performed a cross-sectional survey using focus groups and a two-round Delphi process to explore barriers to KT. The sample included 166 clinicians with varying academic degrees and professional backgrounds. Lack of time, access and the skills to use and appraise evidence-based literature were cited as barriers for clinicians not being up to date with the latest research. Although there was a low response rate of 38%, results highlighted that the allied health professionals (AHP) which included over 10 disciplines (occupational therapists, physiotherapists, dieticians, social workers and speech pathologists) used their colleagues and own experience as their most frequent evidence base, a finding supported by McKenna et al (2005) with occupational therapists. While physiotherapists had more positive results due to having adequate equipment, the occupational therapists reported missing relevance to practice in articles and lacking equipment at workplace to implement research into practice.

McCluskey and Middleton (2010) with community rehabilitation teams, Wilkinson (2012) with allied health staff, and Hughes et al. (2014) with healthcare professionals demonstrated that EBP had not been fully put into practice by the allied health professions. Solutions were identified as a need to change the behaviour of the allied health professions, more training in EBP and involvement in research, but also support from management. In summary, these studies have highlighted that similar barriers to KT still exist in contemporary practice. Suggestions to improve KT have included using peer support networks to promote EBP, and more equipment and training to improve access to research and in appraising information on the web.

The Health and Care Professionals Council (HCPC) requires health professions to maintain standards of proficiency and conduct which include the use of evidence-based practice in order “to be able to draw on appropriate knowledge and skills to inform practice” (HCPC, 2014, p. 12). Clinical guidelines are developed based on research evidence to advise health professionals in their practice. Some guidelines such as the National Clinical Guidelines for Stroke (NCGS) and the International Classifications of Functioning, Disability and Health (ICF) were developed to guide practice of healthcare professions working in neurorehabilitation settings. Hammond et al. (2005) utilized a retrospective audit to determine whether occupational therapists and physiotherapists showed complete compliance with the NCGS and found that there was surprisingly low adherence to them with more than 40% of admitted patients not seen within the recommended time frame, although the reasons for this lack of implementation were not explored. Wiseman-Hakes et al. (2012) highlighted the importance of considering context in EBP and KT and suggested a wider perspective in the definition of EBP.  In a suggested list of ‘key questions’ for EBP they asked for the reasons why recommended interventions worked in a study, under which conditions they worked, for which clients and at what point of their progress they were applicable? The answers to the key questions could provide better information to clinicians and thereby support correct and easier implementation. In summary, although health research evidence is part of policy and guidelines, health professionals still utilize other factors as part of the clinical reasoning process to discern the relevance of this evidence, for example, empirical knowledge and individual patient context, including their preferences, vulnerabilities and co morbidities  (Benner, Hughes & Sutphen, 2008).


This study will add to the existing body of research in knowledge translation. It explores the experiences and views of SSNP occupational therapists to answer the research question how to improve knowledge translation in stroke rehabilitation. The speed and dissemination of research into practice appears to be severely delayed (Hammond, 2005) and in order to allow stroke patients to profit from research as soon as possible, the delivery of new therapy interventions has to happen without delay (Graham, 2006).


This study used a qualitative, descriptive research design to allow the researcher to explore Specialist Section of Neurological Practice (SSNP) Occupational Therapists’ personal experiences and views regarding knowledge translation in stroke rehabilitation.  Semi-structured interviews were chosen to allow participants to explore views using open-ended questions and to ensure richness and depth of data (Oppenheim, 1992). Purposive sampling was used recruiting occupational therapists who were members of a specialist interest group for neurological practice. The participants were informed via an invitation email that identity would be kept anonymous, their participation was voluntary and they could terminate participation without giving a reason at any time.  The first 8 respondents that fulfilled the inclusion criteria were invited to take part in the study and informed written consent was gained before data collection. Telephone interviews were conducted to allow recruitment of participants from a wide geographical area.

Credibility was ensured by having one participant verifying verbatim notes of interview and developed themes; the detailed description of the interview procedure made transferability possible; the study was dependable as findings were confirmed with literature; bias was avoided by continual verbal and written reflections completed by the researcher. The evaluation points for qualitative research by Hammell et al. (2000) was used, alongsie a qualitative research checklist from the critical appraisal skills program (CASP, 2013).

Ethical approval was granted by the University of Brighton School Research Ethics and Governance Panel (SREGP)..


Inclusion criteria: Participants had to be members of the Specialist Section of Neurological Practice and have at least 2 years’ experience working in stroke rehabilitation. None of the respondents were personally known to the researcher ensuring that there was no coercion possible in the recruitment process, and a power dynamic was avoided (Braun & Clark, 2013).

Data analysis

The thematic analysis by Braun and Clarke (2013) was used including six phases of analysis: familiarization, coding, creating themes, reviewing, defining and naming themes, and finally report writing. The analysis was carried out independently by both the researcher and research supervisor and final themes and categories were agreed.


Nine SSNP members responded to the invitation and seven participated in the study. The participants had between three to ten years experience working with stroke survivors in rehabilitation, three of them had a Bachelor degree and four a Masters qualification.

Following the thematic analysis the main themes identified related to 1) how occupational therapists respond to change; 2) how knowledge translation barriers could be seen as learning needs and as such might lead to empowerment for clinicians and researchers; 3) how the step from knowledge to wisdom and applying KT strategies.


Theme One: Responses to Change

The clinicians’ responses to change such as new therapy interventions can either act as barriers or facilitators of KT. All participants highlighted responses to change as influencing KT in practice, including stress due to time pressure, uncertainty and geographical isolation. Interestingly participants reported both negative and positive responses to change in their practice.Table 1; Themes and Sub-Themes

  • Stress due to Time Pressure

Several participants counted the reasons for stress such as increasing caseload, staff shortages and funding cuts which had direct impact on KT: “…with everybody being so busy trying to see patients that nobody steps back and changes anything…they are just trying to keep their head above water…” (P. 7:262).

  • Reaction to New Evidence

Several quotes revealed the uncertainty clinicians have relating personal experience, empirical knowledge, clinical reasoning, and implementing new evidence in their practice: “…as far as I’m concerned the jury is still out on this splinting high tone thing…I have done it with people…who have really benefited…which is great for them…and…ehm…it becomes hard than not to do something…when you know it benefited someone” (P. 4:610).

Some participants mentioned a low motivation towards new interventions and the tendency to resist development as a response to prospective change. This highlights the difficulties some clinicians may experience when trying to link empirical knowledge with the current research evidence, and the complexity of clinical decision making, which KT does not take into account: “…and I think that people get set in their ways…and they are used to…you know…you almost have a little recipe when you have someone with a certain type of impairment and you do the same things all the time and they (clinicians) don’t have to change…ahmmm…so there is some…I guess resistance in a way to change…” (P. 7: 204).  

  • Social and Geographical Isolation

The feeling of isolation was mentioned by three participants, two working in the community and one working in a hospital. For KT to happen the clinician has to be in the place where KT happens, however, this was difficult for some participants: “…yah, a lot of us would like to go on them (relating to cognitive rehabilitation training), but it’s just too far and they are usually two day courses, so you have to have an overnight stay and childcare and all sorts of things…” (P. 5:139).

  • Accepting the Challenge

 Interestingly two participants expressed very positive reactions to new knowledge and research evidence. They showed their enthusiasm about new interventions they were introducing into their work with stroke patients: “…one […] excellent study day I went to was by Janice Eng and it is about the GRASP upper limb programme…so that’s another area of practice that we are trying to incorporate…” (P.7:126).

Theme Two: Learning Needs May Lead to Empowerment

All participants described initiatives used while adapting to change and participants highlighted that identifying and addressing learning needs can lead to empowerment. This is seemingly a new finding on this topic as the researcher could not find related literature which mentioned self-initiative and exploring alternative routes to KT goals. Strategies used by the participants included developing their own implementation guidelines, finding support, and networking. However, barriers to KT identified by the participants included lack of clarity in research evidence and issues related to translation of evidence for a laboratory research setting into the clinical setting.

  • Developing Implementation Guidelines

One participant outlined how an implementation guideline for a new intervention which did not previously exist was created and was disseminated to other teams in the same Trust: “… there has been a lot of work on mirror box therapy specifically and have read lots of research articles and …and…ehm devised a sort of handy…quick user guide and they have made up a kit and we have all of that stored on our share work drive…so we can access it across the whole in-patient OT pathway” (P.2:58).

This is an excellent example in the field of KT as the participant showed initiative in synthesizing, disseminating and exchanging information with others.  No literature was found on the initiative of developing own guidelines however, it appears that self-learning can be an efficient tool when implementing new practices without guidelines.

  • Finding Support

 One of the participants initiated fund-raising and recounted several projects being started: “So for example we are looking to develop a […] project, so we’re looking to be firstly […] with an expert charity in that field” (P. 3:243).

 Several participants took similar initiative with how they justified the attendance of courses and in-services in occupational therapy departments: “…I think we as practitioners we have kind of…stood by saying: Well, look it’s time well spent, if we spend an hour a month (for in-services)…it’s going to be directly invested in improvement of practice…and better results for our patients…” (P. 5:216).

The researcher agrees that justifying training on the background of professional standards (COT, HCPC, RCP), including the goals of best practice and lifelong learning will support KT by making courses, workshops, and training available to staff.

  • Networking

 Many participants highlighted the importance of networking and how this improved knowledge exchange, opportunities for additional training, discovering new interventions and projects, sharing skills, finding support groups, covering supervision needs and linking to academic support: “…we’re also part of the…ehm…district wide…OT Stroke Forum which meets quarterly…all grades and again people share back from training, share evidence-based practice, each time we meet we have a new focus” (P. 2:68).

  • Application to clinical practice

 Some participants stated that articles were too academic and they would prefer more easily understood and less complicated descriptions from researchers: “…so it’s sometimes the evidence is there, but the clarity of the evidence is hard…” (P. 6:559). “…and articles tend to be very academic, and they don’t actually talk about the practical applications…” (P.5:96)

Several participants described situations where the implementation did not work for their patients and that the research lacked information they needed, they did not consider the psycho social needs of the individuals or the resource limitations of the clinical setting. All of these issues were cited as key barriers for KT.

Theme Three: From Knowledge to Wisdom

This theme appeared to the author with the realization that knowledge applied in practice is wisdom. This principle was postulated by Ackoff (1989) within the field of systems thinking. It implies the evaluated thinking and according to Ackoff (1989) leads to understanding. Some participants after evaluating and understanding the advantages suggested possible strategies to facilitate KT in practice.

  • KT Brokers

One participant was very knowledgeable in the area of KT strategies and had information about using a KT facilitator or broker to improve KT. However, most participants were not aware of this as a possible strategy: “…but it’s a massive study […]…which just use guidelines and those who have a knowledge broker plus the guideline…looking at outcomes, ‘cause that’s the only way…you know they have to be a big study which says: Oh, look this unit gets people out quicker cause their interventions are better…” (P. 7:647).

  • Collaborative Research

This topic relates to the combined effort between academic, researcher and clinician. Several participants mentioned that the research outcomes did not always assist in changing practice and one participant recommended collaborative research:…they (undergraduates) do a research proposal…with an extensive review…and the university is always saying to us: Tell us what you want…you know …tell us where the gaps are…’ (P. 4:870).

  • Role of College of Occupational Therapy (COT)

 Several participants suggested a role for COT in creating a central website, making articles more easily available and highlighting importance. Five participants supported the idea that the COT could highlight and summarize articles including their relevance and news worthiness but also including any suggested changes to practice: “…but annually some really strong articles saying why we should do one thing and not another…or at least qualify why we are not doing one thing and not another could be generated…that would be helpful…” (P1:56).

Although all participants were aware of the BAOT/COT website and some also knew the Australian (OT-seeker) or Canadian (Stroke-Engine) website they felt the development of a central website as KT pool could result in easier and faster uptake of new interventions when accessing databases.


Responses to Change

The NHS is ever-changing and participants all identified responses to change which influenced knowledge translation in practice. Graham et al. (2006) stated that it is an enormous commitment for clinicians to keep up to date with KT despite it being essential to AHPs as it presents part of their professional and regulatory body standards. Stress due to time pressure was identified as a key barrier to KT and Poulsen et al. (2014) made the recommendations that “Educators, clinicians, administrators, and policy makers need to take proactive steps to assist practitioners at risk of burn-out” (p. 163). Gupta et al. (2012) found that there was a direct relationship between ‘unmanageable workload and exhaustion’ (p. 93). The authors recommended coping strategies and workshops to lighten the load of work related stress, including approaching the issue as a team and sharing responsibilities. These findings suggest that time appears to be one of the most significant barriers to knowledge translation and all recommendations to improve KT require time.

Some participants showed uncertainty between knowing about the evidence (Lannin et al, 2007) which recommended not to splint stroke patients with high upper limb tone in general and the participant’s own positive experience of splinting. As a result the new evidence was not implemented into practice. Kilbride et al. (2013) clarified that guidelines for splinting required further research  in order to improve KT for splinting in future. Subsequently new splinting guidelines in the UK were published in 2015 (Kilbride et al., 2015).

According to McCluskey et al. (2013), resistance was a more hidden barrier in KT; they pinpointed several requirements for behavioural changes in therapists, which are: beliefs about AHP’s capability and consequences of therapy assessment and intervention, remembering steps and reasoning for interventions, becoming knowledgeable about new interventions and prioritizing new interventions. Appleby and Tempest (2006) highlighted common factors responsible for resistance to change “seeking to protect the status quo, misunderstanding and lack of trust, contradictory assessments and low tolerance for change” (p.477). They reported good results with dissemination and adherence to guidelines following the eight step process of Creating Major Change by Kotter (1996); the steps included 1. Evidence and establishing a sense of urgency, 2. Creating the guiding coalition, 3. Context and developing a vision and strategy, 4. Communicating the vision and strategy, 5. Facilitation and empowering broad-based action, 6. Generating short-term wins, 7. Consolidating gains and producing more change, 8. Anchoring new approaches in the culture.  His application of change strategies and developing rehabilitation intervention protocols were important factors for a successful KT strategy in 2006.

Literature exists on occupational therapists working in rural jobs in countries such as Australia, Canada and USA but no literature was found for the UK. Campbell et al. (2012) highlighted poor job satisfaction when having decreased access to professional development and working in professional isolation. The extrinsic factors for job satisfaction were, for example, salary and security, while intrinsic factors were “challenge, autonomy and perceived significance of work” (p. 2). The authors identified in their study that intrinsic factors were rated higher by the AHPs. The solutions recommended by the authors were a combination of extrinsic and intrinsic factors which would increase job satisfaction and decrease job turnover (Campbell, 2012). Poor access to professional development is a barrier to KT and would need to be addressed to support the clinicians.

Accepting the challenge is a facilitator for KT in implementing best practice. Menon et al. (2010) stated that new interventions can be challenging. They explored challenges in the use of rehabilitation guidelines and found that time was the main work place barrier, while confidence in skills was the barrier for clinicians. They identified the rewards as improved knowledge for therapists, improved practice behaviours as well as better outcomes for patients (Menon et al., 2010).

Learning Needs May Lead to Empowerment

The learning need of finding support can be changed into the empowerment of using support. In an NHS organization for example the League of Friends or the Goodwood Trust are mostly applied to for funding to support courses or projects or other organizations depending on the area. No literature was found which compared NHS and private funding for occupational therapy projects. The initiative mentioned by participant 7 had a fast and direct impact on KT by funding a group project.

Though no articles were found on the topic of networking in stroke rehabilitation, contacts with networks can be realized on the COT (2014) website. Kielhofner in 2005 suggested the idea of  ‘Communities of Practice’. He reasoned that clinicians who use knowledge together must also generate knowledge together and by doing so progress knowledge into practice (Kielhofner, 2005). Several participants highlighted that combined effort between clinical practice and education could enhance KT. However, achieving the goal of collaborative research to improve KT is rather complicated in the United Kingdom due to separate accountabilities in patient care, research and education (Ovseiko et al., 2014).

Bosch et al. (2014) indicated that the clarity of evidence was an important factor to researchers and made suggestions for improving clarity which are: specifying intervention definition, clear description of intensity, frequency and duration as well as similar outcome measures for (in this research) upper limb stroke studies. The impact on improving KT is evident as clarity of evidence supports appropriate transfer of knowledge into practice.

Stroke survivors exhibit heterogeneity in practice which impacts on how the clinician can apply new techniques. Kloda et al. (2009) in a literature review investigated the clinical information behaviours of AHPs working in rehabilitation and compared them to physicians. They concluded that AHP’s information behaviour was not much studied and their requirements were poorly known; therefore they suggested further research in the area of AHPs information requirements to be able to apply new interventions in their practice. The improved awareness of clinicians’ requirements may support KT in future.

From Knowledge to Wisdom

The topic from knowledge to wisdom became evident in Ackoff (1989), a systems theorist who explained the development from data to wisdom hierarchy, in which he defines wisdom as applied knowledge.  One participant introduced research which used clinical guidelines and a knowledge broker. Knowledge brokering is assisting clinicians to make EBP decisions and include knowledge application (Frazer Health, 2009). Bayley et al. (2012) in a study across five stroke rehabilitation centers recruited 79 multidisciplinary team members who were trained in a six month workshop and additionally had a facilitator (broker) to support KT. The results consisted of enhanced clinician implementation skills and improved outcomes for patients which are a perfect example for improved KT.

Di Rezze et al. (2013) used a KT strategy called Summary of Findings (SoFs) in which they gave detailed information of articles regarding risks of a study (comparing intervention group to control group), including details such as the relative effect of the intervention, the sample size, the quality of evidence and a comment section. The results suggested easier application of evidence when using Summary of Findings for clinicians which in turn can improve KT.


This study highlighted that KT is not routinely happening in clinical practice and KT the clinical guidelines are not always followed. KT barriers such as time and resources, attitude and behaviour of clinicians, uncertainty towards research and resistance towards change were identified. These barriers need to be identified in a case by case approach due to variable organizational barriers in each single environment in order to recommend solutions. Training is needed to improve time management skills, coping strategies, assistance through supervision and managerial involvement to prevent workplace burn out.  The multiple personal initiatives reported by participants in this study needs to become natural to all occupational therapists  and thereby create new areas of occupational therapy innovation. Networking was one initiative which has similarities with communities of practice; this is a means of keeping up to date and ahead of change. Learning needs appear to exist for clinicians as well as for researchers; they require recognition of their learning needs and these are seen as an opportunity for empowerment. Further improvements need to happen giving a wider perspective on EBP and KT. The answers to the key questions would provide better information to clinicians and thereby support correct and easier implementation ,an area that could be influenced by policymakers and publishers of new evidencee. There is a vast field of stakeholders involved in KT and occupational therapists have only a small area they can influence in the KT process, which makes initiative, innovation and involvement even more important.


The data for this study was collected via telephone interviews, this was chosen as the participants lived very far apart and in quite a distance from the researcher, which would have caused high travel expenses. The use of telephone interviews might be of disadvantage and instead opting for Skype interviews would improve the reception of visual cues, gain more contextual information, improve rapport with participants and ensure the possibility of reading body language.

Further areas of work

Further topics for future studies were suggested by the author leading into additional investigation of the topic of KT and EBP, into collaborative research amongst separate accountabilities, into improvement of clarity regarding evidence and better application in practice, and into AHP information behaviour.

Key points

  • KT barriers need to be identified in each single environment.
  • Training and managerial involvement is required to prevent burn out.
  • Initiative, innovation, involvement and I are answers to KT improvement.
  • KT barriers can be seen as learning needs and thereby can develop into steps of empowerment.


We gratefully acknowledge the supportive advice provided by Jon Wright (course lead) of the University of Brighton, MSc Health through Occupation.

Uta Schoch, Lecturer, Ludwig Fresenius Schulen, Marberg, Germany; and Patricia Fordham, Principal Lecturer, University of Brighton.


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The impact of sensory integration groups on the participation of children and young people with learning disabilities: perceptions of therapists and teaching staff

Accessible summary

  • This study explored occupational therapy groups based on a technique called “sensory integration”. Children and young people with learning disabilities in a school and college took part in these groups.
  • Therapists and teachers reported increased skills such as confidence, communication and turn taking.
  • They also felt that participation in the groups themselves and later activities increased.
  • The study suggests how the effects of these groups could be measured in future research.


Background: Sensory integration techniques which follow the theory outlined by Ayres (1972) are widely used by occupational therapists as an intervention for children and young adults with learning disabilities, but their efficacy is unclear. Research studies have suggested increased levels of participation and other positive behavioural changes following group sessions using sensory integration techniques, but literature reviews have highlighted a scarcity of evidence supporting their use.
Materials and Methods: A qualitative study in which therapy and teaching staff of children and young adults with learning disabilities aged between 5 and 22, at a school and a college in England, were interviewed to gain understanding of their perceptions of the impact of these groups.
Findings: Groups involving sensory integration techniques were perceived to have a positive effect on the abilities and participation (in both the group itself and subsequent learning and other activities) of children and young adults with learning disabilities and other complex needs in educational settings.
Conclusions: The findings are of relevance to occupational therapists and others working with young people with learning disabilities in special educational and other settings.  In particular, they suggest variables that may have the potential to be measured in future research evaluating such sensory integration groups.


This article describes research exploring teachers’ and therapists’ perceptions of the impact from children and young adults’ participation in occupational therapy sensory integration groups. Sensory integration theory seeks to explain how an individual organises sensation for use in everyday activities.  It was originally developed by Ayres (1972) who investigated how perception, adaptation and learning may be affected by disruption to sensory input.  Her theory proposed that the brain assimilates, organises, processes and interprets information from the senses allowing individuals to adapt and interact appropriately with the environment.  This promotes optimal functioning, including participation in activity and regulation of behaviour (Ayres, 2005, Watling and Deitz, 2007, Smith et al., 2009).  Sensory integration is both a theory and an intervention approach with individuals and groups.

The scope and prevalence of sensory integrative problems may be concerning for families, therapists and teaching staff of young people with learning disabilities, autism and other complex needs. People with learning disabilities have a significantly reduced ability to understand new or complex information, to learn new skills and to cope independently, which starts before adulthood and therefore has a lasting impact on development (Department of Health, 2001).  People on the autistic spectrum may behave in restrictive or repetitive ways and experience social or communication difficulties.  Individuals with either diagnosis who additionally have sensory-integrative problems may find it challenging to take in and interpret sensory input from the environment, discriminate between different sensations, self-regulate behaviour, maintain posture, use both sides of the body together, sequence activities and plan movement (Bundy, Lane and Murray, 2002, Urwin and Ballinger, 2005, Miller, 2007).  Physical, psychological and social impacts are highlighted in the literature (May-Benson and Koomar, 2010, Polatajko and Cantlin, 2010). Quality of life can be severely disrupted, with long term impact on health and wellbeing into adulthood, including social isolation, depression, anxiety and dependence on specialist care (College of Occupational Therapists, 2012).

To address this, Ayres (1972) proposes occupational therapy with a sensory integrative approach on an individual basis from appropriately trained therapists. Many occupational therapists adapt aspects of the original neuro-science theory to make it more relevant for their setting (Smith Roley et al., 2009), for example, running groups rather than individual sessions.

A search of the literature revealed 26 studies related to occupational therapy using a sensory integration approach to promote participation by children or adults with sensory-integrative problems. Three were based in the United Kingdom, one in Canada and the remainder in the United States.  All considered children except for one which related to ‘children and adolescents’ and two concerning adults. There were a variety of study designs: systematic or other literature reviews; phenomenological or other qualitative studies seeking the perspectives of parents or teachers; and quantitative research, including single and multiple-subject case studies and longitudinal studies.

The literature suggests that sensory-integrative approaches are widely practiced by occupational therapists with children (and to a lesser extent adults) with sensory processing problems, including those with learning disabilities (Cohn, 2001) and autism (Watling and Deitz, 2007).  A number of studies have reported positive impacts, for example:

  • Changes in motor skills, balance, co-ordination, social skills, attention and behaviour in school age children (Stonefelt and Stein, 1998), all skills considered central to cognitive, social and academic development.
  • Reductions in behaviours of concern, such as assaultive, impulsive or self-injurious behaviours (Urwin and Ballinger, 2005) and aggression (Roberts et al., 2007).
  • Gains in self-esteem after six months of intervention that were sustained 3 months later (Polatajko et al., 1991), though not significantly greater than gains by a control group.
  • Significant gains in attention and in cognitive and social skills (Miller et al., 2007) compared with children receiving no treatment and an alternative activity–based treatment.
  • Possible positive outcomes in motor performance, sensory processing, behaviour, academic and psychoeducational performance and occupational performance, all potentially maintained after the cessation of the intervention (May-Benson and Koomar, 2010).
  • Reductions in stereotypical behaviours, improvements in communication and social skills, improvements in quality of life, access to typical environments and academic ability (Lang et al., 2012).

There are, however, limitations with much of this research and reviews have cautioned about the conclusions that can be drawn from it (May-Benson and Koomar, 2010).  The majority of the literature focuses on school-age children and few studies are from the UK.  Sample sizes are generally small and the heterogeneity of individuals with sensory integrative problems means that studies have often focused on particular diagnoses, though limited description of participant characteristics often makes comparison between studies difficult.  For example, in the studies reviewed by Lang et al. (2012), most participants were diagnosed with autistic spectrum disorders, however, insufficient information was provided to determine if they also had learning disabilities.  Isolation of the impact of sensory integration is often absent, with many participants also receiving additional therapy, for example behavioural or speech and language interventions.  As a result of the limitations with the existing evidence base, some question whether it is appropriate for sensory integration interventions to be so widely used (Lang et al., 2012).

Changes following sensory integration groups are suggested to support participation in subsequent learning and other activities (Watling and Deitz, 2007), but few studies have measured such changes in participation.  As this is key to development and impacts on health and wellbeing, it could be explored further to inform practice (Cribbin and Lynch, 2014).  Watling and Deitz’s qualitative study (2007) demonstrates the potential of staff and caregiver perspectives to provide some insight into changes in participation following sensory integration interventions, in contrast to questionnaires which may have restricted parents, teachers and occupational therapists in articulating their opinions (Stonefelt and Stein, 1998).

Although there is suggestion of positive impact from sensory integration groups, the exact nature of this could be clearer, which makes it challenging to measure. This research therefore aimed to explore how occupational therapists, teachers and teaching assistants working with children and young-adult learners perceived sensory integration groups to impact on the participation of children and young adults with learning disabilities.


Qualitative research was completed by the first and second authors involving interviews with therapy and teaching staff at a special educational needs school and college for children and young people aged 5-19 and 18-23 years respectively.  Both settings supported children and young people with complex needs including autism, speech and language difficulties, developmental delay and moderate-to-severe learning disabilities. The first author had previously undertaken a student placement in the school, but the authors had no other connection with either setting.  The research explored teaching and therapy staff perceptions of the efficacy of the sensory integration groups, in which a number of learners took part, providing insight into some of the complexities of participation for young people experiencing altered sensory needs.  It aimed to suggest appropriate variables that could be measured in future evaluations of such groups.

Participant information sheets outlining the study purpose were distributed to eligible participants via the therapy management teams at both settings. Staff were sought who were sufficiently familiar with learners’ usual behaviour to notice any impacts of participating in sensory integration groups (for example, from working directly with them on the same day as the sensory integration group). Different professions were sought as suggested by Doig et al. (2008) and four occupational therapists, two senior teaching assistants and a speech and language therapist volunteered. There were seven participants in total and the workplace of each is given in brackets following their pseudonyms, which are used to maintain anonymity. Sally (School) is a senior occupational therapist with over ten years’ experience working with children with learning disabilities. Jane (School) is an occupational therapist with one years’ experience. Fiona (College) and Rachel (College) are both occupational therapists working at the college for over four years. These occupational therapists themselves ran the sensory integration groups in which 5-6 learners (in the college) and 5-10 learners (in the school) took part.  They demonstrated deeper understanding of the purpose and techniques used in the groups. The other participants were familiar with those taking part in the groups and had worked with them in other roles providing therapeutic intervention, teaching or teaching support: Felicity (School), a speech and language therapist with over four years’ experience; Pauline (School) and Emma (College), teaching assistants with over two years’ experience.

Semi-structured individual interviews allowed for flexible data collection as participants were able to discuss learners of their choice. Participants were asked to discuss their perceptions of any effects on engagement or participation that they had observed following sensory integration groups. They were requested not to disclose information which might compromise the anonymity of learners discussed.

Questions explored participants’ understandings of the purpose of the groups and the reasons for learners’ referrals. They were asked to focus upon participation difficulties visible prior to the groups and then encouraged to describe any changes in behaviour, participation or engagement in daily activities they may have subsequently observed, whether during, immediately following the sensory integration groups, or longer-term. Participants were also asked to consider current evaluation methods or methods of gaining feedback from stakeholders to offer insight into outcome measurement. Each interview was transcribed verbatim. Ethical approval was granted by the University of Brighton School of Health Sciences Research and Governance Panel.

The theoretical flexibility and clear stages of thematic analysis gave guidance and structure to data analysis (Braun and Clark, 2013). Themes were identified in the data by identifying repeated ideas, terms, phrases or words between the participants. An inductive approach allowed findings to emerge from the raw data rather than prior expectations.  All data was given equal attention, allowing for unanticipated insights and adding credibility. Data from the school was coded by the first author by hand whilst data from the college was coded by the second author with assistance of qualitative data analysis software. Braun and Clark (2013) describe how analysis in this method will be influenced by the knowledge, viewpoint and epistemology of these authors, whose positive perceptions of sensory integration from previous observations risked influencing analysis. They were therefore mindful of this and reflexive in order to minimise this risk by placing equal emphasis on data that was not supportive of its efficacy. Keeping reflexive diaries to explore presuppositions and the analytic process contributed to trustworthiness (Banner, 2010).


The findings relate to perceived changes in behaviour and participation in learning and other activities of young adults and children with learning disabilities, from participating in occupational therapy sensory integration groups at two specialist educational settings.

Rachel (Occupational Therapist, College) described the adult learners as:

“…quite low in their functioning, developmental delay…minimal or non-verbal…not very confident with their own body and their non-execution of certain movements.”

Sally (Occupational Therapist, School) summarised the child learners:

“…social difficulties, difficulties concentrating, difficulties engaging in work, difficulties regulating sensory input…can be sensory seeking.”

The occupational therapists described the groups in detail. In the school, learners were timetabled to attend a daily sensory integration group which had been running since the start of the academic year (around 7 months) and consisted of three ordered stages of activity. Each stage involved the use of different sensory-based equipment to facilitate alerting, organising and calming activities. The activities included the use of therapy balls, swings, skateboards and rope, beanbags and sensory-based soft play equipment. The specific activities and specialist equipment were described as promoting sensory input to stimulate the central nervous system. Following Ayres (2005) this was described as enabling individuals to better-regulate their responses to the environment.  Learners also attended individual sessions using a sensory integrative approach which often used one or two of the sensory-based activities from the group.

In the college sensory integration groups were staged for one hour per week and had been running for around 18 months. Similar techniques aimed to improve motor skills, body awareness, planning and execution and to enable identification of behavioural areas of strength or behaviours impacting on learning, for example, problems with waiting or taking turns. These groups involved the same five learners.

Sally (Occupational Therapist, School) described activities as alerting, organising and calming, completed in that order and Fiona (Occupational Therapist, College) explained the set routine of ‘alerting’ activities followed by stimulation of a pre-selected sense (such as taste or touch) and finishing with a period of relaxation. Alerting activities included bouncing on balls or wafting a parachute as a group. Rachel (Occupational Therapist, College) clarified that relaxation might involve weighted blankets, bean bags, listening to music or using ‘sensory baskets’:

“….I rock [the cushion on which he is laying] slowly or he quite likes to have a duvet cover over him…shutting out all the sensory information…..the result is that when he leaves he’s much better in terms of his ability to engage with classroom requests” (Sally, Occupational Therapist, School).

Two overlapping themes were identified: perceived changes in performance capacity and perceived changes in participation following the groups, though participants described their uncertainty as to the extent to which these changes could confidently be attributed to the groups.

Perceived changes in performance capacity

Participants described how the groups supported individuals’ ability by impacting upon arousal level, attention, awareness, motor planning and cognitive functioning. It was suggested that sensory integration groups promoted the regulation of very high or very low arousal levels seen in children and adults with learning disabilities, autism and developmental delay, thereby improving levels of participation (see second theme). Emma (Teaching Assistant, College) described the learners as being:

“under responsive and … [having] a really low arousal level…They need sensory input… for regulation, to get them ready to go…”

Sally, (Occupational Therapist, School) explained how sensory integrative interventions provided sensory input into an ‘under responsive system’ and enabled the learners to be sufficiently alert for further therapeutic input.

Participants spoke of how learners could be over or under responsive to their environment, causing an imbalance in arousal levels, interrupting participation:

“He’ll jump and jump….you know he’s in that high arousal state and he needs bringing down with heavier input really to get him ready to attend.” (Jane OT)

The ways they perceived the groups to increase participation in learning activities are further explored within the second theme. In both settings, participants considered the groups to have an immediate impact on, for example, sustained attention and appropriate behaviour:

“…to give some intense vestibular input… get that sensory system working… can see the difference in five minutes he becomes alert…I can then work on different interventions” (Sally, OT).

Sally (Occupational Therapist, School) described a learner “engaging for longer during the sessions, being able to participate for the whole session.” School participants spoke of visible changes of a short duration, with increased focus lasting for fifteen or thirty minutes, though Jane (Occupational Therapist, School) described the sensory integration groups supporting learners to get ready for a subsequent learning or other activity, because they were then more alert and able to concentrate.

The majority of learners discussed were described as experiencing physical and cognitive difficulties interrupting participation in learning activities, including motor planning, balance problems and gravitational insecurity. Participants referred to improved co-ordination amongst learners, with Rachel (Occupational Therapist, College) considering one learner to have ‘developed a sense of body awareness’ enabling a better regulation of force and control or movements.  As a result, they learned to throw gently or slowly, rather than forcefully or aggressively, with Fiona (Occupational Therapist, College) regarding this as helping social development, as such behaviour ‘would frighten people’.

This theme highlights how sensory integration groups are considered to impact on an individuals’ underlying abilities to complete an activity. The second theme explores how these impacts may impact on behaviour and participation in activities.

Perceived changes in observed participation

Participants described changes they had observed in the behaviour and participation of five adult and six child learners within the sensory integration groups. No reference was made to learners’ behaviour remaining unchanged, nor to any aspects of the groups considered by participants or others to be negative.

The groups were described as seeming meaningful for group participants as they were able to complete them in a fun and enjoyable way with others, impacting on self-efficacy, confidence and social interactions. Emma (Teaching Assistant, College) described one learner as initially reluctant to engage, initially needing ‘coaxing or persuading’, but he appeared, to learn to view the groups as a positive environment, participating willingly, which she considered to be “him saying that ‘I’m happy to be here’”.  Feedback received from a teacher was also reported; “that he is a lot better after a relaxation session.”  She went on to describe another learner who slowly increased time spent in the group, and whose achievement of a target to remain for ten minutes, suggests that the groups resulted in increased participation. Fiona (Occupational Therapist, College) described a different learner:

“…(initially) he would come in for five minutes…he wouldn’t come in at all… and accessed almost the whole session today.”

Participants in the school described the behavioural, learning and sensory needs of the children and their difficulty with self-expression. They explored how the sensory integration groups met these needs and were adapted for optimal participation. Participants in the college felt the groups may have impacted positively on behaviours which enabled increased participation in activities, including reduced aggression and prompting. Emma (Teaching Assistant, College) referred to one learner’s greatly improved ability to wait for their turn (for example for the trampoline) during the groups.

Changes in confidence and communication were referred to frequently throughout the interviews. Fiona (Occupational Therapist, College) described a learner now entering the room confidently and willingly and alternating between activities more independently. This learner also displayed increased independence by flushing the toilet with confidence which had not happened previously. The sensory integration groups were also thought to support development of peer relationships:

“doesn’t have any friendships…needs social communication aside from that kind of input … the group is good as it gets him used to it.” (Jane, Occupational Therapist, School).

College participants reported that any immediate changes following the sensory integration groups were visible for the remainder of the day, although any carryover to the following day was uncertain.

All participants appeared to link increased time spent in the groups with increased participation in subsequent learning activities:

“When they come back [from the groups] they are much more settled… can be helping them to calm down and re-engage in the next sort of lesson or next part of the lesson” (Felicity, SLT)

Emma (Teaching Assistant, College) described how one learner’s participation levels changed following the groups. Initially they were ‘unsettled and difficult to manage’, but they became more ‘co-operative, focussed and communicative’. She felt that the groups ‘calmed’ and ‘settled’ this learner in preparation for the next academic lesson.

Different staff members worked with learners at different stages of the day and the occupational therapists, for example, had limited contact with learners following a group. As a result they mainly described behavioural changes during the groups. Difficulty evaluating outcomes was referred to by all college participants, who highlighted the difficulty gaining feedback from learners themselves, mainly due to their cognitive abilities. Nonetheless, indirect feedback could be sought from behaviour during and following the sensory integration groups:

“…he is happier on Wednesday afternoons…smilier… calmer…whereas normally he’s quite manic and very er pacing” (Emma, Teaching Assistant, College).

“…engaging for longer and able to participate for the whole session really” (Rachel, Occupational Therapist, College).

Sally (Occupational Therapist, College) acknowledged the challenge of evaluating the impact of the groups, raising the possibility that it could be participation in activity, rather than sensory integration per se, that resulted in behavioural changes.  All participants saw the groups as part of wider therapeutic input:

“I don’t think it is all OT, I think it’s global, I think we play a part in it.” (Fiona. Occupational Therapist, College).


Accessing the subjective experiences of college and school staff working directly with learners allowed opportunity to explore subtle behavioural changes following sensory integration input, as encouraged by Watling and Deitz (2007).  This has provided insight into the impact on participation within the educational context. The findings suggest that therapists and teachers working with individuals with learning disabilities, autism and other complex needs consider that occupational therapy groups based on sensory integrative principles can have a positive impact on the underlying abilities and participation of those attending.  Measuring that impact is, however, perceived to be difficult and the degree to which improvement results from the sensory integration groups or other therapeutic input is uncertain. These findings resonate with similar studies, as will now be discussed.

For children with complex needs such as autism and learning disabilities, the process of interpreting the sensory demands of the environment can be disrupted, resulting in difficulties participating in key activity necessary for development such as learning, play and social interaction (Ayres, 2005, Schaaf and Nightlinger, 2007).  The complexities of impaired sensory processing and resulting disruption to participation were described in detail by participants, who referred to sensory integrative problems leading to anxiety and challenging or self-injurious behaviour, reflecting other studies (Urwin and Ballinger, 2005, Schaaf et al., 2013).  The most common reasons for referral to the sensory integration groups (motor planning, response regulation, challenging behaviour and ability to remain in and participate in teaching sessions) are all key areas in which these populations may experience difficulties. This supports the highlighted need for regular, intensive, individualised intervention (May-Benson and Koomar, 2010, Polatajko and Cantlin, 2010).

The findings in both studies suggest that participation in sensory integration groups is perceived to be beneficial in addressing several of these issues for children and young adults. Participants described changes in underlying capacities and behaviour leading to increased participation, in particular improved engagement in learning activities and self-help skills.  This resonates with many of the studies conducted with children (for example Case-Smith and Bryan, 1999 and Smith Roley et al., 2009) which might suggest that those authors’ findings are equally applicable to young adults.  Improved cognitive and motor planning skills have been suggested elsewhere to lead to increased engagement in learning activities and self-help skills (Ayres, 1972, Schaaf and Nightlinger, 2007) promoting academic learning, flexibility, social interaction and development of interests.

All school participants described learners appearing calmer following the sensory integration groups, suggesting that attendance had improved regulation of arousal levels and integration of vestibular, proprioceptive and tactile sensory systems.  This supports the use of sensory integration-based interventions using equipment such as weights, swings and scooter boards to help promote the integration of these systems. In both settings, references were made to improved behaviour as a result of attending the groups.  Although this has not been widely explored in the literature, perceived reductions in challenging behaviours have been found in other studies (Urwin and Ballinger, 2005, Watling and Deitz, 2007).  Improved arousal regulation was perceived to promote engagement in subsequent activities, (as argued by Urwin and Ballinger, 2005 and Waitling and Deitz, 2007). Examples given by participants include leisure activities (listening to music and dance classes) and self-care activities (eating in the dining hall and exercise).  Improved arousal regulation and the increased attention and focus observed in some participants following intervention fits with Ayres’ theory (2005), and adds to other evidence of the effectiveness of sensory integration in promoting children’s participation (Schaaf and Nightlinger, 2007, Watling and Deitz, 2007).  Schaaf and Nightlinger (2007) reported improved attention in play and school activities alongside increased independence in self-care activities, following individual sensory integration-based interventions.

Participants highlighted how taking part in the sensory integration groups themselves was an opportunity for socialisation, development of skills such as turn taking and waiting, valuable for young people with complex needs such as autism and learning disabilities (Cosbey et al., 2010). These groups were perceived by participants as having become meaningful to some learners and changes in behaviour, and levels of participation within the sensory integration groups themselves were seen as important in the context of these young people with complex needs.

As well as visible changes within the groups there were suggestions of longer-lasting benefits, such as subtler behavioural changes over longer periods.  This included enhanced confidence and learners developing a sense of self identity, reflected also in other studies (Urwin and Ballinger, 2005). This all suggests potential for the benefits of sensory integration groups to be transferred beyond the immediate setting to further enhance the quality of life of young people with learning disabilities.  Lasting impact following the groups was, however, difficult for some participants to judge, as not all of them worked with learners immediately following sensory integration groups


Similar to other research in this field, this is a small scale study. The findings represent the perceptions of a small number of participants, discussing learners who had participated in sensory integration groups in two educational settings.  As such, the potential for generalisation is limited, though detailed description allows transferability by the reader.

Key participants in the studies, the occupational therapists, were involved in setting up and leading the groups.  They were in a position to have insight into the immediate impact and effectiveness of the groups, though the possibility of them wishing to portray them in a positive light needs to be considered.  They arguably had a vested interest in seeing the outcomes of the sensory integration groups as the cause of perceived changes in behaviour either immediate or longer term following the intervention

Sensory integrative problems do not exist in isolation and the nature of learners’ additional cognitive and behavioural issues were only partially described by participants. In both settings the young people received a wide range of therapeutic, behavioural, and educational interventions and participants raised the possibility of these, or the act of participation in a group activity (rather than specifically a sensory integration group) also contributing to  changes in behaviour.


Sensory integration techniques are commonly used by occupational therapists with young people and adults with autism and sensory and learning disabilities but there is a paucity of supporting evidence for this. This qualitative research suggests that group sessions involving sensory integration techniques are perceived to have a positive effect on the abilities and participation of children and young adults with learning disabilities and other complex needs in educational settings. It has provided rich descriptions of materials and activities used, specific changes in participation, perceived long- and (in particular) short-term impact of the sensory integration groups, contributing to calls for a stronger evidence base and a better understanding of the relationship between sensory integration therapy and the everyday lives of children and families (Cohn, 2001, Arbesman and Lieberman, 2010, Polatajko and Cantlin, 2010).

The findings are of relevance to occupational therapists and others working with young people with complex needs in special educational and other settings such as community, inpatient and residential settings. The findings add to evidence from other studies supporting the use of sensory integrative activities to increase independence and participation, particularly in learning activities (Urwin and Ballinger, 2005, Watling and Deitz, 2007).  In particular, they suggest variables that may have the potential to be measured in future research, which could triangulate perceptions of the impact on performance capacity and participation, using observation or other methods of evaluating such changes.

Alice Harland, Community Learning Disability Team; Craig Swarbrick, Brain Injury Rehabilitation Trust; Dr. David Haines, University of Brighton


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The Therapeutic Relationship and Issues of Power in Mental Health Nursing


Objectives: The therapeutic relationship is an important concept to mental health nurses, and many believe it to be the essence of nursing practice. However, the nurse patient relationship is one of imbalanced power. This study, completed as a BSc dissertation project, forms a scoping review, utilising a systematic approach, to examine the research on the relationship between power and the therapeutic relationship, with relevance to mental health nursing.

Methods: Literature was found online through texts available in the university library catalogue using a variety of search strategies. Literature was searched for on Cumulative Index to Nursing and Allied Health Literature, PsychINFO, ProQuest hospital collection, British Nursing Index and ScienceDirect. Additional articles were found using an ancestry and decendancy approach.

Results: Existing research gives collaborating evidence that there is a relationship between power and the therapeutic relationship. Not only is coercion related to negative evaluations of the therapeutic relationship, but the main way in which professionals influence patients to make healthy choices is through the therapeutic relationship. The context in which mental health nursing takes place also influences this relationship.

Conclusions: As there appears to be a relationship between power and the therapeutic relationship, nurses who identify with the concept of the therapeutic relationship would benefit from considering power as a pertinent theory. Nursing academics need to direct more resources towards researching power as there appears to be a dearth of nursing literature on this topic, particularly in the United Kingdom. Professionals may benefit from reflecting upon power as a concept that affects their reciprocal relationships with patients.


Although nursing is not generally considered a powerful profession (Barker 2009a), power dynamics frequently become apparent when thinking about relationships within nursing (Wilkinson and Miers 1999). Nowhere is this power more relevant than in the field of mental health, where legal powers are granted in order to detain persons who are deemed unwell and in need of assessment or treatment (The Stationary Office 2007).

Despite on-going criticism of psychiatry and its association with coercion, control and power (Szasz 2007; Foucault and Howard 1967; Goffman 1968), and continuing lack of evidence to demonstrate the effectiveness of compulsory treatment (Kisely and Campbell 2014), recent reports suggest coercive practices in the United Kingdom are increasing (Care Quality Commission 2015).

Resistance to the idea of coercion and control in psychiatry, may be found in the idea of empowerment, service user involvement and recovery, which have gained popularity in nursing literature (Barker 2001; Lloyd 2007; Caldwell et al. 2010) and in mental health policy (Department of Health 2011). However, the extent to which empowerment is possible, and its actual impact on service users true freedom and consent within a system that endorses detention and compliance, has been problematised (Grant 2009). This implies that it is important to think about empowerment in the context of the imbalanced power relationships that exist in mental health. That nurses endorse empowerment without appropriately considering the concept of power, may contribute towards ambiguity in terms of the approaches and definitions of empowerment within the nursing literature (Ryles 1999).

Perhaps the most pertinent theorist on power within mental health is Foucault due to his examination of madness (Foucault and Howard 1967), and of medical power (Foucault and Sheridan 1973). For Foucault, however, power is not something that can be held by certain groups or individuals, nor is it exclusive to intentional action. Power is essentially a positive force which permeates all levels of society and people are always simultaneously undergoing and exercising this power. Power, in this sense, is legitimised through knowledge ascertaining to what is considered true, or “discourse”. People are disciplined by discourses that work as normalising structures which guide people to understand the world and their bodies in certain ways (Foucault and Sheridan 1979). Although Foucault’s conceptualisation of power has been criticised as generalised to the extent that it loses any analytic force (McNay 1994), It also opens up ways of thinking about power differently, simultaneously avoiding specificity and reductionism.

The effects of power on relationships is pertinent to the role of mental health nurses as the “therapeutic relationship” is frequently cited as the core of nursing (Barker 2009b; Browne et al. 2012; Dziopa and Ahern 2008; O’Brien 1999).

The idea of therapeutic relationships were highlighted in nursing most notably by Peplau (1988, 16) who regarded nursing as ‘a significant, therapeutic, interpersonal process.’ This asserts the interpersonal nature of nursing, gives salience to nurse-patient relationships and highlights the need for these relationships to be therapeutic, promoting health and growth (Peplau 1988). Since Peplau, therapeutic relationships have been considered the core focus of mental health nursing (Barker 2009b; O’Brien 1999).

In order for a relationship to be therapeutic, though, it must function as more than an everyday relationship. It is a relationship in which the patient feels accepted as a person of worth, free to engage in self-expression without fear of rejection. Therapeutic relationships should involve communication that helps the nurse understand the needs and perceptions of the patient, enable the patient to learn about, or cope more effectively with their environment, and result in the reduction or resolution of the patients’ problems (Reynolds 2009).

The popularity of the therapeutic relationship in mental health nursing has not meant it is easily defined, however. In fact, it may have become more difficult to define now that it is tied into the mental health nurse’s identity (Browne et al. 2012). A literature review on what makes good quality therapeutic relationship identified nine overlapping constructs within the nurse-patient therapeutic relationship (See image 1), which require a complex interplay of skills dependent on the needs of both nurse and patient at a given time (Dziopa and Ahern 2008). Judicious use of power is implicated as one mechanism through which the development of a good quality therapeutic relationship is achieved, although the possibility of nurses abusing said power is also duly noted.

The impact of power on the therapeutic relationship has been alluded to (Dziopa and Ahern 2008; Wilkinson and Miers 1999). However, a review of the literature within this area may shed increasing insights into whether a relationship exists. This literature review, Inspired by my curiosity from practice, defines power as bi-directional, as something that can be used negatively (in coercion, compulsion, force and threat) and positively (through empowerment and legitimate authority or leadership). It also acknowledges that power can be overt (as in restraint or seclusion), or subtle (as in persuasion, approval and observation).

This literature review aims to highlight common themes in academic literature, and areas where more research is needed answering the question:

How does current primary research, with relevance to mental health nursing, explore issues of power within the therapeutic relationship?

There is potential for findings to help guide practice enabling nurses to be aware of the benefits and drawbacks of different facets of power and their use within the therapeutic relationship. It is also possible that the evidence found may confirm or deny whether these concepts are related.


The research question was developed during the process of preliminary searching around the concept of power and the therapeutic relationship. This allowed me to gain a sense of what published research existed on my chosen topic, leading to the development of a question that could be answered by the research available without becoming over or under saturated aiming for between 10 and 20 articles (Aveyard 2014).

As power can be conceptualised in different ways (Scott 2001), which may result in the exploration of different perspectives, it is important to use the appropriate terms associated with those perspectives in order to find a breadth of literature. Some synonyms of power have been mentioned in the introduction – yet preliminary searching revealed more. Authority represents the legitimate use of power while Control, coercion, restraint and restriction represent more invasive uses of power (Scott 2001). In addition, Agency and empowerment could be seen as positive elements of power whereas influence and leverage are more subtle forms of power (Wilkinson and Miers 1999). These synonyms of power were utilised as unique search terms in my preliminary search strategy.

Observations from preliminary searching demonstrated a dearth of specifically nursing literature within this topic indicating my search strategy would need to be broad. A systematic approach was adopted for the primary search strategy in order to gain a sense of the literature that already exists on this subject. Four separate search sectors were developed to ensure specificity to nursing, mental health, power and the therapeutic relationship respectively. These search sectors were combined using the Boolean logic AND so all results returned were relevant to all the search sectors (Boagy et al. 2013).

Within the search sectors, additional search operators were used informed by literature specific to performing a literature search (Aveyard 2014; Boagy et al. 2013; Jesson et al. 2011).

The extent that the search was restricted by the generic search sectors was then considered. “Therapeutic relationship” was considered as a limiting search term that may be described in other ways, for example, “therapeutic alliance” is another term that could be used. Further exploration uncovered “helping alliance” and “working alliance” but these proved to be more relevant to counselling and psychotherapy than nursing and including them did not expand results. The term “relationship” on its own was also considered, which caused the search to become too broad with an unmanageable amount of results (n=1108) from just one database.

The following databases were accessed as considered the most relevant to nursing psychiatry and sociology: CINAHL, PsychINFO, ProQuest hospital collection, British Nursing Index and Science Direct.

It was then necessary to develop inclusion and exclusion criteria (Table 1) in order to define the scope of the review (Aveyard 2014) and answer the research question: how does current primary research, with relevance mental health nursing, explore issues of power within the therapeutic relationship?

Inclusion and exclusion criteria

  • Only articles exploring power (and its synonyms) and the interpersonal relationship were included.
  • Only articles that were relevant to nursing were included. This included articles that were interdisciplinary in nature but excluded articles that were exclusive to other professions such as physicians.
  • Articles examining control and restraint as an intervention were excluded.
  • Only primary research was included.
  • Only research published after 2004 was included.
  • Only research available in English was included.
  • Research from all specialities of mental health was included.
  • Research from all countries was included.

As it is possible that searching through online databases alone may not find all relevant research, snowball sampling was used to accent this initial approach (Aveyard 2014).

When the full texts of the final articles were read, 9 did not meet inclusion criteria, leaving 10

Although similarities between findings were apparent from an early stage and fit into themes, to aid in presentation of the findings, articles were instead split into themes according to the approach used to gather data, rather than their findings. Critical analyses of each article took place using a research appraisal framework by Caldwell et al. (2011) as it is appropriate for both quantitative and qualitative research, both of which were included in the review. Critical appraisal of the articles were presented in the appropriate themes and the impact of each article was considered and synthesized for discussion.

The relationship between perceived coercion and evaluations of the therapeutic relationship

Four of the studies found through the literature search were Quantitative studies measuring service users’ perceptions of coercive practices alongside their evaluations of the therapeutic relationship to see if there is an association between these concepts. The following articles result in a fairly narrow conceptualisation of power as coercion, which, despite being often measured on a continuum, does not allow for positive conceptualisations of power. Also, a variety of measures are used to describe the therapeutic relationship resulting in some conceptual discrepancies within this area too. Despite this, the articles demonstrate that a relationship does exist between these concepts, which is significant (p<0.05) in three out of the four studies.

Stanhope et al. (2009) acknowledge case managers use of pressure in assertive community treatment of vulnerable populations in Pennsylvania, USA and seek to examine consumer’s perspectives in relation to these pressures through use of surveys delivered through face to face interviews. They recognise that introductions with consumers had to be negotiated through case managers which may result in social desirability bias.

Findings show a modest relationship between consumer-provider relationship, and perceived coercion with small effect size but no relationship between case manager’s utilisation of coercive strategies (pressure), and perceptions of coercion. It is noted, however, that case managers utilised almost exclusively low-end coercive strategies, such as verbal guidance (Neale and Rosenheck 2000). Higher perceived coercion was also related to shorter service contacts with a small effect size; more years spent in services with a medium effect size and negative service evaluation with medium to large effect size.

Sheehan and Burns (2011), from a complimentary perspective, seek to test a hypothesized association between the therapeutic relationship and the experience of coercion. A cross sectional cohort study was conducted for a consecutive sample of admissions to five acute hospitals in Oxford, England. Sheehan and Burns (2011) report a similar response rate (75%) to other articles exploring perceived coercion, but acknowledge that patients who decline to participate in research may have different views to those who did participate. How the population used in this study differs from a UK population is noted with consequences for generalizability.

Sheehan and Burns (2011) show that positive evaluations of therapeutic relationship with admitting clinician (12% identified as nurses), were significantly associated with low levels of perceived coercion; low levels of negative pressure and high levels of procedural justice, as measured by the AES. Perceived coercion was higher in participants who had been involuntarily admitted and logistic regression analysis showed the therapeutic relationship as an important factor, explaining 6% of the variance in perceived coercion. Just 21% of the variance was explained through the collected data indicating that other factors also come into play, including relationships with other staff members.

Furthermore, Theodoridou et al. (2012) use a similar approach in their study utilising a survey delivered through face to face interviews to measure the relationship between perceived coercion and the therapeutic relationship.

Theodoridou et al. (2012) show that higher levels of perceived coercion were consistently related to worse evaluations of the therapeutic relationship. Furthermore, involuntary admission, history of involuntary admission diagnosis of schizophrenia were all associated with higher AES scores.

These three articles present corroborating evidence to demonstrate that higher ratings of the therapeutic relationship are linked to lower perceptions of coercion in inpatient psychiatric populations across England (Sheehan and Burns 2011) and Switzerland (Theodoridou et al. 2012) and Assertive Community Treatment populations in the USA (Stanhope et al. 2009).

Wolfe et al. (2013), examine the relationship between coercion, motivation and therapeutic alliance in community-based drug and alcohol treatment in New South Wales, Australia. The researchers show that coercion was significantly related to external motivation and that external motivation was partially related to lower therapeutic alliance. However, no significant relationship was found between coercion and therapeutic relationship, apart from for the variable “openness”.

Patients perceptions of power and the therapeutic relationship

Further to the quantitative articles discussed previously, four articles found in the literature search were qualitative studies examining service users’ perspectives of power in various forms. While none of these studies sought to examine the therapeutic relationship, relationships with professionals emerge as an important concept from their results.

The following qualitative articles should help expand on the reductionist nature of quantitative research, enhancing understanding of how the variables of power and the Therapeutic relationship relate to each other in certain situations, as understood by service users, giving some sense of the complexity of this relationship.

Thogersen et al. (2010) aim to explore whether patients perceive Assertive Community Treatment (ACT) to be a coercive service due to ongoing academic debate about coercive aspects of the assertive provision of care. Participants were recruited, using staff as gatekeepers, from two newly formed ACT teams in Copenhagen, Denmark.

Themes were revalidated through agreement among other researchers and participants.

Lack of active participation in treatment processes and a poor alliance with case managers; not being recognised as an autonomous person and crossing the line and intruding on privacy, were recognised by Thogersen et al. (2010), as themes enhancing perceptions of coercion. On the other hand, a collaborative and mutually trusting relationship with case managers; commitment, perseverance and availability and a recognition of the need for social support and assistance with everyday activities were experiences that counteract perceptions of coercion. These themes can easily link coercion with the therapeutic relationship but also indicate other important factors, including time spent with patients; providing support; intrusion on privacy and case managers’ attitude demonstrated towards the patient. The study also demonstrates that different services invoke different experiences that relate to perceptions of coercion. Namely, ACT was considered coercive in that it was intimidating and overwhelming, whereas experiences of coercion in other services were related to lack of autonomy, lack of alliance with staff and lack of influence on treatment.

Tveiten et al. (2011) seek service users’ views and experiences of empowerment utilising data from focus group interviews. They define the concept of empowerment, relating it to concepts of advocacy, service user involvement and participation, stating that user participation allows transcendence of the power hierarchy inherent in psychiatry. The population is selected from two inpatient units in Norway, each with different acuity, but similar in relation to the services offered.

The three main themes included possibilities and presuppositions for participation, influence of the system on the empowerment process, and collaboration along a continuum of power between empowerment and powerlessness. Interesting to note for this review is that, in the possibilities and presuppositions theme, participants spoke about real acknowledgement, rather than acknowledgement as a formal claim.

Laugharne et al. (2012) aim to examine the experiences and attitudes of patients with psychosis in relation to factors that enhance or undermine trust, choice and power utilising face to face interviews. They acknowledge that, while participants found it difficult to engage with the concept of power, two overarching themes emerged. First that patients feel the need for a shifting balance of power that moves over time and is dynamic according to circumstances. Crucial to this shifting of power is improving patients’ understanding by providing them with information. Within this theme it is also suggested that threats of coercion and neglect disable patients.

Second, patients saw a trusting relationship as vital in their care. Trusting relationships are portrayed as going beyond the recognised expertise gained through training and experience, to include attributes and behaviours of patients as well as staff. The value of a personal touch was also stressed through aspects of kindness, hopefulness, friendliness, conversations about shared interests and personal disclosure from staff. There was contradictory evidence from some participants who suggest that they thought patient views should take precedence over scientific evidence and that relying on scientific knowledge was disempowering for patients.

Maguire et al. (2014) used a purposive sampling of 12 nurses and 12 patients from a forensic hospital in Australia to explore the practice of limit setting – a potentially coercive intervention, from both nurses and patients perspectives – in order to propose principles to guide practice. Limit setting is frequently used in forensic settings and it focuses upon setting boundaries in the therapeutic relationship and limiting or preventing disruptive behaviour.

Maguire et al. (2014) propose three themes. First, limit-setting is valued by patients as it sets boundaries around what are acceptable or unacceptable behaviours, promoting safety structure and control in the unit. This is also proposed as development of a therapeutic milieu.

Second, engaging patients in an empathic manner indicates that patients don’t find limit-setting as coercive in itself, but this is mediated by elements of the relationship in which patients feel understood, and understand why the limits have been set. Experiences of humiliation and disrespect contribute to coercive experiences, whereas experiences of limit-setting in a caring way did not damage the relationship or lead to negative outcomes.

Thirdly, the authoritative, rather than authoritarian style of limit setting suggests that, from a patient perspective, an authoritarian style is experienced as intimidating, aggressive and disrespectful and damages the therapeutic relationship. Conversely an authoritative style involves the nurse being knowledgeable about the patient and setting limits in a fair, consistent and respectful manner.

Nurses perceptions of power and the therapeutic relationship

Some qualitative articles found through the literature search considered power and the therapeutic relationship from a professional perspective. The professional perspectives explored appear to be more varied than the patient perspectives, some posing as a challenge to the use of power while others accepting the necessity of using power (or influence) to encourage healthy behaviours.

Maguire et al. (2014), explore nurses’ perceptions of limit setting, alongside previously mentioned patient perspectives, in forensic services. Many of the nursing perceptions are similar to patients’ perceptions, with nurses giving stories of observed poor practice resulting in aggressive responses or poor outcomes. However, separate to patients’ views, many nurses were uncomfortable with the term limit-setting as they believed it implied exerting control over patients as a coercive intervention.

Other nursing staff confirmed patient views, that limit setting was important for safety and maintenance of the therapeutic milieu. Having an understanding of the patient, and being fair, respectful and consistent was crucial to patients responding positively to limit-setting.

Cutcliffe and Happell (2009) highlight that interpersonal relationships, which are fundamental to nursing practice, are replete with issues of power. Despite discussions about empowerment being popular in the literature, Cutcliffe and Happell (2009) point out that there is a dearth of nursing literature examining power as it may be a difficult or uncomfortable subject for nurses. The study utilises examples from practice, with consideration for confidentiality, to illustrate health professionals’ use of power over consumers. Examples from practice enable naturalistic generalisations where readers gain insight through recognition of similarities in case study details and find descriptions that resonate with their own experiences.

Cutcliffe and Happell (2009) argue that these examples are tied to the use of invisible power through the dominant discourse of bio-psychiatry. They illuminate the recovery discourse as a viable alternative to this in which nurses can reconnect with Peplau’s theory of mental health nursing or, in other words, re-value the therapeutic relationship. However, this article paints an exclusively negative picture which taken alone may overemphasize the prevalence of the use of invisible power in current mental health practice.

In contrast, Gardner (2010) reports on a preliminary theory of how mental health nurses establish therapeutic relationships and maintain professional boundaries. The theory portrays the establishment of the therapeutic relationship as a gradual process, which begins with “therapeutic friendliness”, and develops through stages of “therapeutic engagement”, until a “therapeutic relationship” is developed and deepens over time.

Similar to Laugharne et al. (2012) who indicate that patients appreciate personal disclosure and conversations about shared interests, this study indicates that therapeutic engagement begins with a process of being friendly, which is not based on professional roles, but rather on getting to know each other. This is demonstrated to be particularly important in order to counteract the previous negative experiences many mental health clients have had in services before, supporting results suggesting that previous experiences of coercion might result in a higher likelihood of perceiving coercion in future (Laugharne et al. 2012; Theodoridou et al. 2012; Thogersen et al. 2010).

As a relationship progresses through the different levels of engagement it finally becomes a “Therapeutic Alliance” in which nurses can use “Therapeutic Leverage” as a form of influence that helps the client make the best decisions regarding their illness and health. It is important to recognise that “Therapeutic leverage” is different from coercion or manipulation, which would jeopardise the therapeutic relationship making it more difficult to manage. The level of influence a nurse has through their “therapeutic relationship” with a client can also be compromised when professional boundaries become blurred, resulting in confusion from the client as to whether the relationship is a friendship or a professional one, highlighting significant complexities within this framework.

Rugkåsa et al. (2014) highlight contemporary professional roles that are both empowering and controlling in light of recent changes in mental health where professionals utilise a range of “influencing behaviours”. The use of existing groups promoted discussion of professional perspectives on the use of “influencing behaviours”, to which real cases and existing relationships could be referred.

The quality of their relationships emerged as the central way in which professionals influenced patients, highlighting the need for trust within these relationships to be built over time. Honesty, curiosity, fairness, empathy, consistency and reliability were considered important to demonstrate within the therapeutic relationship, which in turn promoted engagement from patients. Providing something outside of patient expectations, such as going for coffee, or helping with practical tasks, helped to create reciprocal obligations, similar to findings by Laugharne et al. (2012) which suggest that patients also appreciate conversations about shared interests and staff personal disclosure, which is traditionally considered beyond professional boundaries. Emphasising the reciprocity of relationships, the authors describe “negotiating agreements” as another mechanism for influence. The final way of exerting influence was indicated as “asserting authority”, noting professionals’ power to compel, mainly through the use of the mental health act. This was seen as an inferior approach to others as, although it is a useful way of ensuring patient safety, it also had the potential to undermine relationships. The authors describe the difficulty navigating patients’ expectations about coercion that arrise from them having experienced coercion before. In fact, the very context of having the Mental Health Act to fall back on can be experienced as coercive in itself.

Strengths and limitations of study

As a novice researcher at undergraduate level, this review is hindered by inexperience and limitations placed by financial and time restrictions (Aveyard 2014). Publication bias may be an issue for this review as literature was only found on electronic databases which could be improved if efforts were made to search for grey literature (Polit and Beck 2014). Single author reviews might also increase the potential for subjectivity and bias, although I have consulted with my dissertation tutor, which will hopefully have helped limit my own biases where evident. I have also acknowledged my own views at the beginning of this research so that it would be evident to others if my own views did influence the results.

In contrast, I consider the broad approach to this research a strength, as it demonstrates the complexity of power relations instead of focusing on a single area. Although most articles are not exclusively relevant to nursing they acknowledge the interdisciplinary nature of working within mental health and nurses’ core role within the interdisciplinary team. Recommendations may be found as relevant to other professions working in settings alongside nurses but may also lack specificity to nursing.


Power is a complex phenomenon that may need to be broken down into other elements in order to be better understood and researched. This review was able to observe some of the current trends in research relevant to mental health nursing as to the way in which power is conceptualised.

The findings of this review mainly converge upon 4 areas: Legitimate use of power by professionals, the adverse impact of coercion, force and neglect, how are balance and reciprocity important to both power and the therapeutic relationship, and the influence of the system upon these perceptions. Mental health nurses are clearly in a position of power in comparison to service users and this review proposes that this is not inherently bad. There are examples of where professionals use their power legitimately and this is beneficial. This relies upon having a good Therapeutic relationship. However, the potential for coercion if this power is misused is apparent and perceptions of coercion are related to poor evaluations of the therapeutic relationship. Professionals should be aware that balance and reciprocity may be important concepts when thinking about building relationships in the context of unbalanced power relations and might also want to acknowledge that structural and environmental factors can influence how patients perceive actions as either legitimate or coercive.

There were only three articles exclusive to nursing (Gardner 2010; Maguire et al. 2014; Cutcliffe and Happell 2009) although two further articles had nurses involved as part of the research (Thogersen et al. 2010; Tveiten et al. 2011). The extent to which nurses can accurately reflect on and engage with the concept of power, when it has been indicated as something which they are uncomfortable discussing (Cutcliffe and Happell 2009), is highlighted by the lack of articles exclusive to nursing and the language used to signify power within those articles, such as leverage (Gardner 2010) and limit setting (Maguire et al. 2014).

It has been noted elsewhere that there is a dearth of nursing literature regarding coercion which is surprising considering that nurses are involved, directly and indirectly, in many coercive interventions (Galon and Wineman 2010). Although this review is exclusive to nursing, it was difficult to find exclusively nursing-related literature. Additionally, patients may be uncomfortable with the idea of power due to its negative connotations as noticed in certain studies exploring patients’ perspectives (Tveiten et al. 2011; Laugharne et al. 2012).

Although three studies were of UK origin (Rugkåsa et al. 2014; Laugharne et al. 2012; Sheehan and Burns 2011) none of these included a nurse in the research process. This is an important limitation as the unique culture of the UK may provide unique challenges and perspectives. Future research in the UK, including nurses in the process, would enable more specific recommendations to UK nurses in various settings and may highlight areas of power explicitly relevant to nursing. The EUNOMIA study highlights differences in coercive practices across European countries (Raboch et al. 2010), further cementing the difficulty in generalising this review between countries. Interestingly, the only centre where nurses order coercive measures more frequently than physicians was the United Kingdom (Raboch et al. 2010). The need for nurses to be involved in research about coercion in the UK, when they are the ones most frequently ordering it, is evident. However, as results in this review appear to conform across cultures and are supported by an article of international approach (Cutcliffe and Happell 2009), some implications of this review should not be discounted From a UK perspective.

Recommendations and implications for practice and research

Despite consensus in this review that many relationships might exist between power and the therapeutic relationship, further research is needed due to the quality of the current quantitative research and the tendency to focus on a single element of power: coercion. In regard to the relationship between perceived coercion and evaluations of the therapeutic relationship, longitudinal studies may help determine whether this is a causal relationship and experimental studies may be appropriate if an intervention specifically targeted at building a therapeutic relationship can be developed. Studies should continue to use face to face interviews to collect data for surveys as, although this is more time consuming, it results in a more complete data set and higher response rate. Directions in research to date appear to be interdisciplinary, reflecting the increasing interdisciplinary nature of mental health care. However, an increased nursing emphasis needs to be applied to research in order to relate findings specifically to nursing. The articles in this review were all written in what are considered high income countries (The World Bank Group 2015) reflecting the higher number of mental health professionals employed as a proportion of the population in these countries (World Health Organisation 2011).

The current research is difficult to generalise to UK culture and more research is needed in order to assess whether these findings can be generalizable across cultures, and whether unique cultures have unique differences. However, the homogenous nature of high income countries mean it would be more reasonable to generalise the findings of this review to the UK than to developing economies who do not have such a developed mental health workforce. Ethnographic studies involving participant observation may also be helpful in future in order to see if there is a difference between attitudes as gathered by interviews, and actions as seen through observation (Gobo 2011). Future research needs to make efforts to attempt to gain the views of individuals who for various reasons did not want to participate in current research. This will obviously pose practical and ethical challenges, although involving service users as part of the research team may provide new perspectives due to the potential for people to change their responses in relation to who is asking the questions. This also highlights the importance of increased nursing involvement in these research teams, which are currently overrepresented by medical staff.

Nurses may benefit from acknowledging power as a relevant concept within their practice, which appears to be strongly related to evaluations of the quality of the therapeutic relationship. Power may be an uncomfortable topic to reflect on as it may be seen as equating to coercion, but not all power is perceived as coercive and may be perceived legitimately. Relationships are clearly indicated as a factor in which perceptions of power may change. Some of the important aspects in these relationships to ensure they are empowering and not coercive are fairness, reciprocity, authenticity and a personal touch. Sharing of power involves the sharing of information and needs to be balanced appropriately throughout the relationship in order to avoid feelings of either coercion or neglect.

The need to reflect upon power has been demonstrated and there is potential for (ab)use of power to damage the therapeutic relationship. Coercion is also remembered by service users and impacts their perceptions of future encounters within services. The coercive context of mental health services may make service users more sensitive to issues of power and more prone to perceptions of coercion – and the threat of coercion through the mental health act itself may cause formation of therapeutic relationships to be more difficult. It may not be a coincidence that mental health nurses ascribe such value to the therapeutic relationship if you consider how difficult it is to build relationships in a culture where coercion is so prevalent. The influence of the system should not be ignored when thinking about power and current models of practice should be evaluated to determine their benefits and disadvantages in relation to the power relationships they can produce and, in turn, the effect this has on building trusting therapeutic relationships. In particular, the allocation of time should be considered as an important aspect of whether our relationships with service users are coercive or therapeutic.

Neil Molkenthin. Mental Health Nursing, BSc (Hons) Nursing Student


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Factors influencing the use of Maggot Debridement Therapy in the Nursing management of the Diabetic Foot


Aims: This paper seeks to explore the factors that influence the use of maggot debridement therapy in the nursing management of the diabetic foot. It will examine literature relating to the beneficial attributes of the maggot and the advantages of its use. The paper will consider the perceptions of patients and health professionals regarding the therapy and also assess the barriers for its use and investigate the lack of credible evidential material available to professionals, which may hinder the therapy being used within the hospital environment and the community setting.

Background: Maggot debridement therapy has been used on wounds for hundreds of years but has come under intense scrutiny over the last 10 years. It is a method of debridement that uses the larvae of the common green bottle fly to remove necrotic and devitalised tissue from chronic ulcerated limb wounds. Maggots have excretions and secretions that cause various physiological changes within wounds that assist in faster debridement. The use of the therapy has other beneficial properties including its ability to disinfect, cleanse, reduce inflammation and repair difficult wounds.

Method: This dissertation took the form of a literature review and as such examined literature available between and 2010 and 2014. A systematic literature search was conducted using electronic databases including Cochrane, Cinahl, NICE, One Search, Pubmed, Wiley Online, British Nursing Index, Embase, NHS evidence and Google Scholar with inclusions in place. From these searches twenty four pieces of literature were identified and subsequently critiqued and appraised. Two themes were established from the appraisal and from these themes a synthesised document was produced.

Results: Evidence has shown that maggot debridement therapy does debride more quickly than conventional therapies. It has also been established that this debridement technique does not remove healthy tissue. However, this may be the case with surgical debridement. The review has also identified that there is substantial evidence supporting the fact that pain is a side effect of the therapy that needs to be addressed early on. Although there is generally a negative perception of maggots it has been found that with careful handling, good communication and education patients are willing to try the therapy.

Conclusions: Maggot therapy is an effective tool in the debridement of necrotic foot wounds but due to the lack of rigorous random controlled trials available, there remains a lack of evidence that supports its use. It is widely suggested that maggot debridement therapy will one day be set amongst the conventional debridement therapies and not just being used as a last resort treatment.


maggot1This work explores the question, “Factors influencing the use of maggot debridement therapy in the nursing management of the diabetic foot?”

A chronic wound is one of a continued problem to the affected area. Chronic wounds have very different healing behaviour to acute wounds. A foot ulcer usually results from pathological processes such as vascular disease or diabetes millitus which will produce a continued and prolonged event resulting in severe tissue damage (Nigam et al 2006).

There are many different kinds of wound debridement available to persons affected by non-healing wounds and include surgical, mechanical, enzymatic, biological and autolytic debridement (Alexiadou 2012).

Maggot debridement therapy (MDT) is a mechanical/biological debridement procedure where the live maggots of the common green bottle fly (Lucilia Sericata) are placed onto a necrotic sloughy wound (Tian et al. 2013). Maggots have jaws that assist the larvae to move through the food source using mechanical debridement (Barnard 1977). It has also been established that maggots use their mandables to secrete proteolytic enzymes (Biological debridement) that devitalises tissue in a selective manner and liquefy’s the tissue enabling the larvae to digest the material. These enzymes effectively degrade extra-cellular matrix components, including laminin and fibronectin. Therefore assisting in the digestion of the necrotic wound matrix, amounting to an effective debridement therapy (Chambers 2003).

According to Opletalova et al.(2011), maggot effects on wounds have been devided into three areas including debridement, the anti-bacterial effects and the stimulation of wound healing. The debridement of the wound assists in the repair of the defective re-modelling of the extra-cellular matrix proteins and prevents the failure of re-epithelialization. The success of MDT on wounds has now been identified to be as a result of three proteolytic enzyme catagories that have been found in larval excretions (Chambers 2003). These excretions have an inhibitory effect on both gram-positive and gram-negative bacteria (Nigam et al. 2006). Other investigations have identified that the ammonia excreted by maggots has an effect of increasing the pH value of the wound, generating an inhospitable environment for bacterial growth (Pettican 2012).

Reports relating to the properties of maggots are numerous, highlighting their abilities to debride, cleanse, disinfect, and repair stubborn non-healing wounds where conventional therapies have failed. It has been noted for centuries that maggots have the ability to prevent infection and promote healing in wounds. The battlefield surgeon of Napoleon noted that soldiers had returned to the field hospital with healing maggot-infested wounds sustained during battle. It was believed that the maggots had not only prevented infection but had accelerated the healing process (Nigam et al. 2006). During World War 1 orthopedic surgeon William Baer had witnessed for himself the attributes of maggot infested wounds and as a result subsequently pioneered the first systematic application of clinical maggots on a non-healing wound. Baers’ entire work on maggot therapy was published posthumously in 1931(Sherman 2009). The use of MDT became widespread during the 1930’s, however with the availability of antibiotics and the ability to mass produce penicillin, despite MDT’s success, by the mid 1940’s it had all but disappeared from use (Nigam et al. 2006).

More recently and as a result of bacterial resistance to antibiotics, MDT was revisited as a medical procedure to assist in the treatment of non-healing wounds that were resistant to antibiotics or when patients were unable to tolerate anesthesia (Merilyn & Russel 2004).


image012The paper was to take the form of a systematic literature review with the aim of identifying the most relevant and recently published material on the subject of a predetermined academic question. In order to do this 10 electronic databases including: Cinahl, One Search, Cochrane, Pubmed, Wiley online, British Nursing Index, Google Scholar, NICE, NHS Evidence and Embase were searched to identify the relevant literature for the review. There were 23 key word and search terms used within the search parameters and also included a detailed inclusion and exclusion criteria formed part of the overall methodology. Of the literature identified as potential sources of information, 24 papers were formally critiqued and reviewed to form the basis of this document.

Influencing Factors

Qualities that make MDT a successful tool in wound debridement

The research has identified the following authors who give a variety of findings related to this topic and this chapter will discuss these from Tian et al.(2013); Hall (2010); Menon (2012); Jones et al. (2011); Cazander et al. (2013); Pritchard (2013).

Recently, efficacy of MDT has been examined in great depth. Tian et al. (2013) conducted a meta-analysis involving four studies Markevich et al. (2000); Sherman (2003); Paul et al. (2009); Armstrong et al. (2005). Comparisons were drawn between MDT and conventional therapy using three hundred and fifty six patients. Three of the studies Markevich et al. (2000); Sherman (2003); Paul et al. (2009) were in relation to MDT and diabetic foot ulcers (DFUs). The fourth Armstrong et al. (2005) was in relation to maggot therapy in lower extremity “hospice” wound care. Of the four trials selected, Markevich et al. (2000) was a random controlled trial (RCT) and the other three were case control studies, Sherman (2003) being retrospective and Paul et al. (2009), being prospective in nature. The evidential strength provided by a prospective study is more reliable than that of other non-experimental designs because the investigator is able to determine the incidence of an issue and its possible causes (LoBiondo-Wood & Haber 2002).

The outcome measures of the analysis were the healing rate of DFU’s defined as full re-epithelialisation, time of healing, incidence of infection and rate of amputation.

The results of the meta-analysis conducted by Tian et al. (2013) suggesed that the MDT group were significantly superior than the control group in most areas. Comparison of healing rate was twenty seven percent for MDT and nineteen precent for controls. However, within the prospective case control study itself the results relating to the comparison of healing rates were fifty six percent for MDT and sixty two percent for the controls. This suggests a significant difference between the single study Paul et al. (2009) and the four study meta-analysis results identified by Tian et al. (2013).

Further examination revealed that the case control study in question had defined the concept of complete healing differently from the other trials which may have produced the error when collating the outcomes. Amputation rates were fifteen percent in the MDT group compared to thirty six percent in the control group. Regarding comparison of incidence of infection, MDT group was sixty five precent and the control group was eighty percent. Two of the four studies, Sherman (2003) and Armstrong et al. (2005) examined comparisons of time to heal and both studies showed that MDT was on average of three and a half days faster to heal than the conventional group. Tian’s et al. (2013) conclusions suggest that MDT may be more effective in increasing healing rate and anti-biotic free days and decreasing the rate of amputation and time of healing compared with control inteventions. However, due to the insufficencey of high quality evidence of relevant literature regarding the effectiveness of MDT the finding of this meta-analysis are not definitive.

Hall (2013) conducted a review of current literature to establish whether using MDT for the removal of devitalised and infected tissue in chronic wounds is a valuable tool in healing. This review identified four themes that were relevant in confirming the effectiveness of MDT, Debridement, Infection, Granulation and Cost Effectiveness. Systematic electronic searches were conducted for all themes mentioned above. From these searches a total of twelve studies were identified and discussed within the review. It was concluded by Hall (2013) that the review of the relevant literature identified that MDT was both an effective and efficient tool in the reduction of time to complete debridement of chronic wounds, when compared with conventional therapies. However, there is little significant difference regarding the time for wounds to heal, which is in conflict with the evidence of Tian et al. (2013). Some conventional therapies are more pedestrain at fully debriding a wound bed of devitilised tissue.

There is evidence to suggest that MDT does have the ability to supress and eradicate infection and may stimulate the re-granulation of vitilised tissue. Unfortunately, the trials within this review had some evidence of limitation, including very small sample groups and non-randomised selection of participants which may influence bias within the study.

Menon (2012) conducted a literature review of methods of MDT and patients experiences. An electronic database literature search was conducted and common themes were identified, namely, debridement, antimicrobial effects and psychological issues. Menon (2012) further discussed and compared the appropriate methods of application of both free range and confined maggots. The review identified that both application methods debride with similar efficiency. Menon (2012) further reviewed on the issue of both applications of MDT when compared to that of hydrogel. It was established that time to ulcer healing was not significantly different between the two groups which is a direct contradiction to the findings of Tian et al. (2013) but does corroberate the results of the review conducted by Hall (2013). However, it can be confirmed that Hall (2013); Tian et al. (2013); Menon (2012) concurs the MDT was considerably more efficient at time to full debridement than the conventional therapy. It was also stated in the review by Menon (2012) that MDT produces secretions that inhibits the bacterial load of wounds that are susceptible to infection. In doing so they are helping to eliminate meticillan resistant staphylococcus aureus (MRSA) and other antibiotic resistant bacteria. Larval secretions change the pH value within the wound making it more alkaline. This in turn makes the wound an inhospitable environment for various bacteria. MDT also disrupts and destroys the formation of colonies of bacteria, namely biofilms. Menon (2012) concludes that if used appropriately, MDT can be an in-expensive, efficient and effective debridement tool. Its properties of accelerated debridement and anti-bacterial action have been witnessed in both acute and chronic wounds alike, especially in diabetic foot ulcers. MDT has few side effects and is generally well received by patients, however, evidence suggest that some individuals, dependent on their co-morbidity, may experience pain as a side effect and this should be managed from the offset with appropriate analgesia.

Jones (2011) produced a literature review examining maggots and their role in wound care. A comprehensive search for appropriate material identified seven articles suitable for viewing. The Critical Appraisal Skills Programme (CASP) critiquing tool was used on the collated literature where four themes were subsequently established:- Infection control and Promotion of healing will be discussed in this chapter. The “Yuck” factor will be discussed in a later chapter. Cost effectiveness will not be discussed in this paper.

It was confirmed by Jones (2011) that MDT was a driving force behind the reduction of bacteria in ulcerated wounds, therefore, being responsible for the prevention of infections. Further to this, it has the added benefit of reducing malodorous wounds and reducing pain. The reduction of pain by the use of MDT may be at odds with the comments made in the review by (Menon 2012). Jones (2011) discussed the promotion of healing. It was stated MDT did accelerate necrotic tissue debridement from chronic wounds which in turn promoted rapid granulation when compared with conventional therapies. These comments were similar in nature to those of Tian et al. (2013); Menon (2012); Hall (2013).

Cazander et al. (2013) conducted a litratrure review that examined the multiple actions of the Lucilia Sericata larvae in hard to heal wounds and discusses the molecules contained within the maggot secretions that accelerate wound healing and reduce chronic inflammation and inhibit bacterial infection. His review accepts that MDT has a proven value as a debridement tool along with other benefits that have been widely reported in clinical trials, inluding anti-infection, immunomodulation, angiogenesis, tissue remodelling and regeneration.

In addition, maggot secretions contain two different molecules that are able to prevent bacterial biofilm formation and breakdown existing colonies of bacteria as previously discussed and corroberated by Menon (2012). With regard to wound healing, secretions also enchance the production of growth factors by monocytes and macrophages within the wound. Maggots secrete various enzymes that consume devitalised tissue and it may be the case that these enzymes also destroy various host molucles within the wound. It has been suggested by Cazender et al. (2013) that the larvae may produce anti-bacterial molecules enabling them to survive in a heavily contaminated bacterial environment who compete with the larvae for their nutritional source. There is potential that by reducing the bacterial load, maggots may well control the process of decay and therefore protecting themselves from harmful bacteria. Cazander et al. (2013) is of the opinion that the combined actions of molecules within maggot secretions are responsible for the beneficial effects of MDT.

Pritchard (2013) argued that larval therapy should be a primary and secondary treatment in wound healing. The debridement of the wound conducted by the primary application and the secondary applictation targeted at the debrided wound on a cellular level that promotes healing. Pritchard (2013) states there is evidence that molecules secreted by maggots can have a role in promoting tissue regeneration and accelerating wound healing. this idea is shared by the review of Cazander et al. (2013). Pritchard (2013) explains that maggot secretions play an intrinsic role in various physiological actions including perfusion; reduction in inflammation; anti-bacterial effect; promoting cell signalling; fibroblast motogenesis, and angiogenesis. Maggot secretions have been shown to promote fibrinolysis therefore interacting with and influencing perfusion. Secretions are believed to interact directly with aspects of the inflammatory response, modulating its performance to aid and contribte to wound healing. They destroy and prevent the formation of biofilms that cause infection. Maggot secretions in low doses have been shown to induce changes in cell morphology which stimulate fibroblasts into the wound . In conclusion Pritchard (2013) states that the growth promoting activities of maggots and their secretions has been demonstrated effectviely, and the investigations conducted within the subject strongly indicates that maggots are capable of much more that just wound debridement. The reapplication of MDT onto a debrided wound will not only assist in the healing process but also closure of the wound.

This theme has shown to some degree that maggots and their secretions have several primary and secondary benefits that supports the argument that MDT is a very useful tool in the management of ulcerated wounds.

Factors that present barriers for the use of MDT

The research has identified authors who have findings relating to this topic, namely Mudge et al. (2014); Davydov (2010); McCaughan et al. (2013); Menon (2012); Jones et al. (2011); and Gilead et al. (2012).

Mudge et al. (2014) conducted a randomized controlled, open, observer blind, parallel group study relating to a trial of larval therapy for the debridement of leg ulcers. The study compared the clinical effectiveness of a larval therapy dressing with a standard debridement treatment, namely Hydrogel. According to the BNF (2014) hydrogel dressings are recommended for dry sloughy wounds and donate liquid to the wound enabling autolytic debridement of the necrotic tissue to take place. The dressings are best avoided in cases of infection of heavily exuding wounds. The study aim was to identify the time of debridement of venous leg ulcers and mixed arterial leg ulcers. Sixty four patients completed the full study. There were thirty two patients in each group of which thirty one patients of the larval group and eleven patients in the hydrogel group fully completed the study. Mudge et al. (2014) explained that previous research conducted by Dumville et al. (2009) intimated that pain associated with larval therapy should be anticipated. For this reason throughout the trial participants experience of pain was monitored during each treatment visit. It was subsequently identified that the larval therapy group experienced ulcer related pain or discomfort on a more regular basis than that of the hydrogel group. More participants withdrew from the study as a result of pain than for any other reason. The review of Davydov (2012) corroborates the findings of Mudge et al. (2014) and further adding that pain is indeed a common side effect of larval therapy and develops within two or three days from commencement of treatment and according to the findings within Sharman (2002); Sharman (2003); Courtenay (2000) between four percent and thirty three percent of patients experienced pain that ranged between mild to severe in intensity. McCaughan et al. (2013) in her qualitative study identifies a small qualitative study by Kitching (2004), who’s findings within his own study suggested that patients experienced a reduction in the level of pain experienced when using larval therapy. It can be seen that this statement directly conflicts with those of Davydov (2012); Mudge et al. (2014); McCaughan et al. (2013).

McCaughan et al. (2013) is a qualitative study regarding patients’ perceptions and experiences of venous leg ulcers and their attitudes towards larval therapy. Eighteen patients took part in the study twelve men and six women. Five people in the study were treated with larval therapy. McCaughan et al. (2013) comments that two of the five patients treated with larval therapy experienced severe pain and were withdrawn from the study. Menon (2012) in her literature review reiterates the comments made by all the above authors that there was significantly more pain in groups of patients that had undergone larval therapy as opposed to Hydrogel therapy. Gilead et al. (2012) adds that the conclusions of a review they conducted of their experiences of treating four hundred and thirty five patients with a combined number of seven hundred and twenty three wounds over a period of thirteen years, revealed that although eighty two point one percent of wounds fully debrided, there was a significant increase in the level of pain and discomfort reported by thirty eight percent of the patients. This agrees with the comments made by Menon (2012); McCaughan et al. (2013); Mudge et al.(2014); Davydov (2010).

Jones et al. (2012) discusses the “Yuck” factor, which for the purpose of this dissertation has been interpreted as the clients distaste or mental aversion to the whole concept. Jones et al. (2011) draws on the phenomenological study of Kitching (2004) whereby six patients were monitored over a twelve week period. The initial pre-conceived feelings of the group regarding maggot therapy were feelings of disgust and not wanting to have the maggots crawling around in their wound. However, following a period of education and subsequent therapy five out of six of patients were subsequently un-phased by the thought of maggot therapy and that their wounds had improved somewhat. According to Jones et al. (2011) further studies from Steenvorde (2005); Courtenay (1999) established that providing all patient issues are addressed through appropriate, up to date, honest and accurate information regarding the therapy and its perceived outcomes, concerns regarding this issue can be eliminated. Encouraging practitioners and patients alike to accept and work with the therapy will go a long way in dealing with the barriers and issues associated with maggot debridement therapy. When these problems arise nurses are best placed to promote and influence patient choice with good quality transparent communication.

Davydov (2014) commented that some patients may feel repulsed by the idea of live organisms within their wounds which may lead to a refusal to have this therapy administered. McCaughan et al. (2013) identified that participants in their study believed that the feelings of squeamishness in relation to maggots would be short lived if they witnessed an improvement in the wound. It was also acknowledged that patients had built their own knowledge database regarding the treatments and abilities of MDT.

The evidence clearly shows there are some issues regarding the use of maggot debridement therapy and this chapter has highlighted a couple of the most prominent issues. These issues are easily resolved by planning for pain and having full, honest, open discussions with patients regarding the treatment prior to its application (Jones et al. 2011).


Chronic wounds are notoriously difficult the treat especially in patients with failing health. Evidentially, conventional debridement therapies have been shown to work, however, research suggests that MDT is more effective and efficient at debriding chronic ulcerated leg wounds (Sun et al. 2014).

Diabetic patients generally suffer peripheral vascular changes and as a result of poor perfusion tend to suffer with severe septic lower limb wounds (Pettican 2012). Surgical debridement and other debridement techniques can be used where appropriate. However, with surgical debridement there is the potential of removing healthy tissue alongside devitalized matter (Pettican 2012). Maggots on the other hand have been shown not to damage healthy tissue but remove devitalised necrotic matter leaving healthy tissue and granulating wound bed material undamaged (Pettican 2012).

The evidence has suggested that MDT offers the clinician a debridement tool that has a faster time of healing, fewer amputations, fewer incidence of infection therefore a higher rate of antibiotic free days (Tian et al.2013). Maggots have shown an ability to remove sloughy, devitalised tissue from the wound bed more quickly than other conventional therapies including hydrogel (Menon 2012). It has been established that excretions and secretions from maggots contain proteoltyic enzymes which devitalise selective tissue effectively degrading extracelular matrix components and digesting the matter in a liquid form (Pettican 2012). Maggots have also been shown to inhibit the bacterial load within the wound and also altering the pH value of the wound creating an inhospitable atmosphere for bacteria such as MRSA to survive. Maggots disruprt, destroy and prevent the formation of biofilms or bacterial colonies associated with wounds, Therefore, preventing and eradicating infection (Jones 2011). There have been suggestions that MDT has further microbiolical properties including anti-imflamatory abilities and immunomodulation, angiogeneis, tissue remodelling and regeneration (Cazander et al. 2013).

This review has illustrated that the use of MDT has many beneficial effects and advantages over conventional therapies on the debridement of diabetic chronic ulcerated wounds. Where there is a need for speedy debridement or where a patient cannot undergo surgical debridement (Sun et al. 2014). MDT should be considered by health care professionals as a primary tool in the treatment of chronic infected wounds within the hospital environment or community setting rather than an after thought or a last resort (Pettican 2012). However, there are issues that must be considered and addressed when using MDT. It has been identified by several authors including Mudge et al. (2014); Dumville et al. (2009); Davydov (2012); Sharman (2002); Sharman (2003); Courtaney (2000); Menon (2012); Gilead (2012) that ulcer ralated pain is a side effect of MDT treatment and that it can be between mild to severe in nature. The onset of pain is normally within the first two or three days and can affect between four percent and thirty three percent of patients. Only one author Kitching (2004) claimed that the majority of the patients in his study had a reduction in pain. Patients have been known to withdraw from studies as a result of associated pain.

Pettican (2012) makes the connection between pain and the alteration of the pH balance within the wound caused by maggot secretions and excretions and believes for MDT to succeed pain management is critical. Within this study there is overwhelming evidence to suggests pain is an overriding factor that should be monitored during treatment and having analgesia available from the outset may ensure that the therapy is tolerated by patients who would remain pain free. Should the issue of pain not be addressed early on in the process, pain may present itself as a barrier for the use of MDT.

The aversion to maggots is not uncommon, Jones et al. (2012); Kitching (2004) Steenvorde (2005); Courtenay (1999) all highlight issues concerning the distaste and aversion both patients and clinicians have regarding MDT. Interestingly, it has been established that the majority of persons who were given appropriate and transparent education regarding the therapy tolerated it well. Educating clinicians and patients alike in the treatment and its application is essential for the fears and feeling of repulsion to be eradicated.

From the study of McCaughan et al. (2013) it can be seen that patients with chronic leg ulcers were willing to try alternative therapies in order to rid them of their wounds as their quality of life had been blighted by this condition. Feelings of squeamishness were soon forgotten on visualising the improvement within the wound. McCaughan et al. (2013) How the treatment was presented to the patients was also a factor as to whether the treatment would be accepted by the patient.

One of the most discussed topics was the lack of research findings regarding the credibility of the use of MDT. Most authors within the review make comment regarding that fact that research for the use of this therapy is simply at this time not strong enough. The reasons for this lack of rigorous evidence has been identified as a lack of random controlled trials on the subject, poor description controls, non-blinded assessment outcomes, poor description of control and inadequate sample sizes (Gottrup 2012) and (Tian et al. 2013).

For MDT to be taken seriously, a more intensive evidential programme needs to be undertaken. It can be seen that very few random control trials have been carried out on the efficacy of MDT. Jones et al. (2011) identifies more healthcare professionals than ever before are reliant on evidence based practice when making clinical decisions regarding treatment. As a result of this, it is felt that more indepth research relating to MDT must take place in order to encourage and support the use of this debridement tool. Random controlled trials are the essence of research and offer the strongest evidential platform from which to stand when trying to prove the strengths or weaknessess of a particular subject (Ellis 2010). RCT’s explore the relationship between two variables therefore creating an RCT for the efficacy for MDT is going to be difficult to prepare because of the nature of MDT designing prospective randomised and placebo-controlled trials may prove difficult (Davydov 2011).


This work has examined what factors influence the use of maggot MDT in the nursing management of diabetic foot ulcers. It has established through detailed examination of current available literature that MDT could be a valuable tool in the treatment of necrotic wounds despite there being very few credible random controlled trials relating to its efficacy and use.

Obstacles such as the lack of strong evidential literature, associated pain and the feelings of revulsion and disgust have been highlighted within the paper and are believed to be elements within the subject that may have hindered the success and use of this therapy within the medical profession.

However, with detailed, specific, in-depth random controlled trials and thorough meta-analysis investigations of the current literature, well directed education for clinicians and patients alike and honest, transparent communication with clients, MDT may in time secure itself amongst the existing debridement tools that assist in the nursing management of diabetic foot ulcers within the hospital environment or community setting.

Vincent H Curtis, Adult Nursing, BSc (Hons) Nursing student


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A systematic review of the factors affecting the provision of social support from co-workers during the return-to-work process


Work, in the majority of cases, has been shown to have greater benefits to health and well-being than unemployment. Waddell and Burton (2006) found that for most people work provides resources necessary for economic well-being. Furthermore they reviewed strong evidence that work also allows individuals to meet their psychosocial needs for identity, self-esteem, and social status. Correspondingly, unemployment was found to be consistently associated with poor mental and physical health (Waddell and Burton 2006). Sickness absence is estimated to cost employers in the UK £9 billion per year and to cost the state £13 billion (Black and Frost 2011). Long term absence from work due to sickness can therefore be very costly both financially and in terms of health and wellbeing. It is important that efforts be made to increase the ease with which people are able to return-to-work (RTW) in a sustainable and timely manner.

The availability of social support from colleagues has consistently been found to have an effect on RTW success (e.g. Norlund 2013), and this is likely to be related to the benefits to well-being that result from feelings of belonging within a supportive work environment (Inman 2007). In the pursuit of improving current understanding, a body of research has begun to investigate the conditions under which social support is more, or less likely to be provided. A number of factors have emerged such as whether work accommodations entail extra work for co-workers, whether the returning worker’s claims of illness are trusted (Eakin et al 2003) and whether the illness suffered by the returning worker carries stigma (Brouwer et al 2010). Furthermore, Dunstan and MacEachen (2014) have developed a model of co-worker responses to work accommodations provided for an injured colleague. They suggest that factors such as attributes of the injured worker (e.g. gender, race, competence) and features of the injury affect social support behaviours via the co-worker’s judgement of the fairness of the work accommodations. This model presents a coherent and plausible account of the process however the studies which informed its creation did not specifically consider the RTW process but rather supported employment for a disabled employee. The following review of studies, which have considered factors affecting social support during the RTW process, allows further development and validation of this model.

The increasing number of qualitative studies investigating social support in the RTW process provided an opportunity to collate and synthesise these findings in order that a comprehensive and coherent understanding of the factors affecting social support could be reached. Once synthesised, the findings presented may allow RTW specialists, including occupational therapists, to better understand the optimal conditions for a successful return to work in order that they can best support returning workers.

The aim of this systematic review using meta-ethnography was therefore to investigate the factors influencing provision of social support by co-workers to a colleague returning after sickness absence.


In January 2014 (08/01/14), several databases were searched for articles relating to the factors affecting social support given to colleagues returning from sickness absence. Databases searched included PubMED, Web of Science, CINAHL, Business Source Premier, and AMED. The search terms used were: co-worker OR colleague “return-to-work” OR “sickness absence” AND “social support”. Only articles published since 2000 were included to ensure study findings were relevant to today’s workplaces.

Following retrieval, records were screened using the inclusion and exclusion criteria as follows:

  • Considers factors affecting social support
  • Considers RTW following long term sickness absence
  • Qualitative data
  • Primary data
  • Does not exclusively consider social support given during absence from work.

The Journal of Occupational Rehabilitation was also hand searched for further relevant articles as were the references and citations of selected studies. Studies published between January 2014 – November 2014 which cited the selected studies were further screened on 01/12/14. Fig. 1 (below) depicts the articles retrieved at each stage of the systematic search.


A data extraction form that included criteria from the CASP checklist for qualitative research (Critical Appraisal Skills Programme 2013) was used to record key findings and methodological details. Methodological quality ratings were then assigned to each study by comparing the results of the CASP checklist with Cesario et al’s qualitative levels of evidence (2002). Critical appraisal of study quality was performed in order to improve understanding of the methodological processes of the studies, and to ascertain how much confidence should be placed in the findings of certain studies. No studies were excluded as a result of this appraisal.

Data analysis

Relevant data from the selected studies were synthesised using meta-ethnography, as developed by Noblit and Hare (1988).

Meta-ethnography represents a means of synthesising qualitative studies in order that the end-product is not merely an aggregation of findings but a synergy that offers new understanding and prompts further research. Key concepts are identified within each study through a process of induction and these are compared and contrasted in order to generate novel interpretations. Meta-ethnography attempts to maintain the original terminologies used by participants and primary authors throughout the synthesis in order to improve the validity of the resulting synthesis. There are a series of phases that make up the meta-ethnography process.

Noblit and Hare (1988) describe the first three phases as involving selecting the studies for review and becoming familiar with them. Phase four involves the determination of relationships between each study. Key concepts are identified for each study and entered into a table through which the similarities and differences between studies begin to appear. In phase five the studies are translated into one another. This is done by attempting to locate each study’s unique concepts and metaphors within the other studies in order to identify similarities and differences between studies. Common concepts are categorized into themes.

The sixth phase concerns synthesizing translations: A decision is made about whether the concepts arising from each study can be described as relating to one another reciprocally, in a refutational sense, or as components of a line of argument. Reciprocally related concepts are those that are so similar they could encompass one another. Concepts related in a refutational sense are those that oppose each other. Finally, concepts that relate to one another in a Line of Argument are those that describe different aspects of a single phenomenon and combine to provide a fuller understanding of that phenomenon. The final phase involves expression of the synthesis, which in this case, will be in written form.

Statement of researcher’s interests

This research is underpinned by a constructivist epistemology, which Paterson et al (2001) claim is compatible with attempts to synthesise qualitative literature. In line with this epistemology, it is accepted that the interpretations made herein reflect the first author’s individual worldview and alternative interpretations are plausible. A reflexive diary and research supervision with the second author was maintained throughout the research process in order that any personal assumptions or expectations could be monitored.


Sixteen articles met the inclusion criteria for this review. Of these articles, seven were assigned a good quality rating, and nine were assigned a medium quality rating using Cesario et al’s qualitative levels of evidence (2002).

Factors related to individual workplace actors

Characteristics of the returning worker

In several studies, the returning worker’s character or perceived character was influential to the provision of social support. A key attribute was the worker’s attitude; Participants in several studies spoke of social support that was dependent on the returning worker having the ‘right’ attitude which involved willingness to work hard towards making the return successful and being honest.

One participant in Dunstan and Maceachen’s study (2013) who worked in a military camp reported:

…as long as they [the returning worker] don’t have an attitude to give up or whatever, we kinda look after them as one of our own. (p.48)

Values of co-workers

In several studies, participants reported personal factors that encouraged them or others to provide social support, such as enjoying helping people or having a good pre-existing relationship with the returning worker. Furthermore participants in Sager and James’ study (2005) study discussed how having been through the RTW process was often a pre-requisite for social support:

… people don’t understand unless they experience it themselves. (p.133)

Influence of the supervisor

Four studies discussed the role of the supervisor in either facilitating or hindering the provision of social support among employees. The support behaviours they modelled were particularly influential. In a study conducted within the competitive electrical sector (Kosny et al 2012), managers were reported to have made attempts to prevent social support being given to returning workers, and one participant even reported workers had been rewarded for harassing a returning worker.

If a guy’s worked for a company and he’s really giving it to [the injured worker]…he made it so bad that this guy quit when he was injured, well the company is going to say…hey come on, I’ve got a job for you. (p.446)

The presence of the supervisor in RTW planning also appears very influential; participants in two studies reported feeling that without the guidance of a supervisor, misunderstandings and conflict were more likely to occur.

Factors related to the condition

History of illness

The returning worker’s illness history had an influence on provision of social support in several studies; the duration of a worker’s recovery and the number of previous absences led to reports of impatience on the co-workers’ part in several studies. Participants in Tjulin et al’s study (2011a) felt ‘drained of goodwill’ as time went on (p.1984).

Mental Health Problems

The existence of a mental health problem led to feelings of unease in several studies. Participants in Dunstan and Maceachen’s study (2013) reported feeling nervous of ‘provoking the workers’ mental condition’ (p.50) and therefore refrained from providing social support. A similar lack of knowledge about mental illness was reported to cause prejudice and discrimination in a separate study.

Another factor related to the returning worker’s condition that was reported as influential to the provision or withholding of social support was the visibility of their condition; several studies reported that a visible injury was more likely to be accepted and accommodated by co-workers than invisible conditions which led to doubt and distrust.

Lack of trust in the veracity of sickness absence claims

The validity of a condition was often called into question if it was not immediately visible and also if negative stereotypes were held about injured workers.

These stereotypes typically concerned ideas that the worker was irresponsible and had carelessly caused their injury, was lazy, or was trying to take the “easy way out” (Stergiou-Kita et al (2014a), p.16). Participants in Kosny et al’s study (2012) described being harassed at work by co-workers who believed them to be “milking the system” (p.443) while negative stereotypes led returning workers in two studies to actively restrict social contact with their co-workers. Participants in Choi et al’s study (2014) sought to avoid the rumours that were often spread about returning workers who were perceived as “malingerers” (p.4).

I was really self-conscious. ‘What do other people talk about in whispers when they see me doing exercise in the gym?’ […] So I did exercise alone and secretly”. (p.4)

Furthermore another study (Lysaght and Larmour-Trode 2008) reported that when co-workers trusted the injured worker and believed their claims to be true, they were more likely to provide support. One worker reported feeling he could rely on his co-workers to provide support as he felt they trusted him.

People here know me quite well and know that I work hard and I’m reliable and I don’t abuse the system, so when I’m injured, I’m injured, despite whether the injury is ‘invisible’ or not. (p.263)

Factors related to the culture of the workplace

Supportiveness of workplace culture

Several studies discussed the culture of the work environment in terms of how social support was facilitated. A participant in one study (Dunstan and Maceachen 2013) discussed the difference in her willingness to support colleagues in a supportive compared to a non-supportive workplace. She felt responsible to ‘pitch in’ in the former workplace whereas in the latter workplace she did not feel the need to help;

Quite frankly, I didn’t really care about the person with issues […] I came, I filled in my hours, I got paid, and I left. … The toxic environment didn’t lead to good relationships. (p.48)

Similarly, participants in another study (Kosny et al 2012) felt that the competitive culture of the electrical sector, where worries about job security were rife, and workers were divided into segregated teams, hindered the provision of social support. One co-worker reported ‘They want us to out-work one another’ (p.443). In this environment, helping another colleague would put one’s own job security at risk and therefore was not feasible; co-workers needed to prioritise their own well-being and job security before considering others.

Individualistic versus collectivistic workplace cultures

In addition to these findings that the individualistic priorities of workers in the electrical sector precluded social support, two studies discussed individualistic vs collectivistic workplace cultures, although with contrasting findings. Participants in one study (Dunstan and Maceachen 2013) reported feeling happier to put in extra work or allocate the lighter tasks to a returning worker if they felt their work group had a collective identity while participants in Tjulin et al’s (2011a) study who worked within a collectivistic culture were keen to simply replace the injured worker rather than provide special work accommodations for them. Another study (Tjulin et al 2011b) found that within workplaces where the workload was seen to belong to the worker, there was less tension in the workplace and workers were keen for their colleague to return to his own workload and reduce the stress on them.

Factors related to the quality of the organisation of the RTW plan

Quality of formal communication

One factor that appears to underlie several others in the provision of social support is the quality of formal communication within the workplace. In several studies, the lack of sufficient communication about the returning worker’s condition, limitations, and entitlements led to the proliferation of rumours, gossip, and misunderstandings, which hindered the provision of social support. The lack of social support was not necessarily malicious; a lack of formal information led to participants feeling ‘unequipped to give the support that was needed’ in Dunstan and Maceachen’s study (2013; p. 49) while participants in another study provided inappropriate support when they lacked understanding of the workers’ condition. In accordance, Tjulin et al (2011a) found that implicit communication about a worker’s return caused anxiety to be felt regarding how to act around the returning worker while a participant in Stergiou-Kita et al’s study (2014b) reported receiving “extensive support from coworkers who were educated by management about precautions to take to ensure effective wound healing” (p.503). However, contrary to the majority of studies included in this review, Stergiou-Kita et al (2014a) found that reduced communication concerning the returning worker’s condition prevented harassment and exclusion;

We have a strict privacy [policy]. Nobody else will know who is on a claim other than the immediate supervisor. Because in construction when you’re dealing [with] a predominantly male environment, he’ll [the worker will] be labelled, excuse my language, the dog f*****. He’ll be harassed. He will be ostracized by his co-workers (p.16).

Lack of understanding of RTW plans

A lack of understanding of the RTW process or of the co-worker’s role in the RTW process was often cited as a reason that social support had been inhibited. For example, co-workers who were unsure of the returning worker’s entitlements in line with the RTW scheme made health service workers returning from sickness absence in one study feel as if they were an aggravation if they attempted to attend medical appointments (Sager and James 2005).

Participants in two studies reported feeling social support may have increased if co-workers were more involved in planning the RTW process. They would then be aware of the rights of the returning worker, would be allowed input as to how they managed any additional work load, and could identify how best to support their colleague. However, co-workers interviewed in another study held quite different ideas about their involvement in planning the return; co-workers did not feel they should be involved in the process and stated they would rather be left to manage their own workload.

Allocation of work load

A common theme among eight of the studies was that the provision of modified work to a returning worker could incur resentment from co-workers, particularly if it was seen to be easy, or a duty reserved for more superior employees, in which case workers were believed to be receiving special treatment. Participants in Kosny et al’s study (2012) reported ‘sensing contempt from co-workers who felt they were now doing ‘cushy’ work’ (p.445).

Resentment also occurred if co-workers were expected to do extra work in order that the returning worker could receive accommodations. Participants in two studies saw this as a particular problem if the returning worker continued to be paid the same amount for doing less work.

Synthesis of findings

The factors discussed in this meta-ethnography combine to form a line of argument synthesis whereby the findings of the studies complement one another in order to generate new understanding, as defined by Noblit and Hare (1988). Many factors seem to interact with one another to influence the provision of social support. Furthermore, as in the model proposed by Dunstan and MacEachen (2014), it appears that the relationship between identified factors and social support may be mediated by the co-workers’ judgement of fairness of work accommodations. Although this concept of fairness was not specifically discussed in any of the studies it does seem to dominate many of the participants’ quotes and the primary authors’ interpretations.

Judgements of a lack of fairness made by co-workers have been observed to lead to restriction of support in a number of cases in the selected studies, for example:

  • Where co-workers were not allowed input into the allocation of work tasks.
  • Where co-workers believed they were being asked to do too much extra work.
  • Where co-workers perceived the returning worker to be receiving special treatment.

Judgements of fairness might lead to provision of social support when these antecedent factors are reversed e.g. co-workers are allowed input into allocation of work tasks. One quote that demonstrates the importance of judgements of fairness is taken from Dunstan and Maceachen’s study (2013):

It’s going to cause resentment, like when they […] can only perform fifty percent of their tasks and they’re still getting paid. (p.50)

This participant predicts that resentment will occur when the amount of work performed by the returning worker and the amount of pay they receive, are not in proportion. This unfair situation is expected to lead to a restriction of social support.

It therefore appears that situational and dispositional factors within the RTW process may often be subject to a judgement of fairness in determining whether those factors will result in the provision of social support.

Discussion and Implications

Nature of Synthesis

Many factors have been identified in this review as contributing to the provision of social support or lack thereof, and generally the studies are in agreement regarding these factors i.e. they present as reciprocal translations. On three occasions there was a conflict between studies in their findings – with regard to whether individualistic or collectivistic workplace cultures best facilitate support, whether co-worker input in the RTW plans facilitates social support, and whether reduced communication about the worker’s communication hinders support or impedes bullying. These disagreements may be related to contextual differences between studies such as the nature of the work tasks or the culture of the country in which the workplace was located. For example, participants in Stergiou-Kita et al’s study (2014) who reported that limitations on communication reduced the harassment of returning workers, acknowledged that this was due to the workplace being male-dominated and hostile. In this setting, formal communication regarding the returning worker’s illness may not have reaped the same benefits as in more supportive workplace cultures.   It is important, in taking the findings of this review forward, to recognise that measures taken to improve social support in one workplace may not be successful in another. Many of the included studies provided little information regarding the workplaces in which their participants worked and it would be valuable for future research to clearly document this in order that comparisons can be made between workplace contexts.

A line of argument was developed as a result of the synthesis of studies whereby the primary factors identified within the studies appear to both directly influence provision of social support and to indirectly influence it via the co-worker’s judgement of the fairness of work accommodations.

Factors that influence social support provision

This review draws together similar findings across a number of contexts regarding the factors affecting co-worker social support. Four over-arching categories of antecedent factors were found to consistently affect the provision of co-worker support in varied workplaces and cultures and this consistency of findings allows for greater confidence to be placed in the resulting recommendations for policy and development of theory.

The studies included in this review were mixed with regard to whether they investigated social support that was perceived by the returning worker or social support that co-workers reported providing. However remarkably similar factors were reported by both returning workers and co-workers. The one exception to this was that returning workers appeared to discuss negative stereotypes held about them more frequently than their co-workers reported them. This may have been due to co-workers being affected by a social desirability bias whereby they choose not to report undesirable, stereotypical beliefs to the researchers (as discussed by Krumpal, 2011), or it may be that in the state that returning workers in two studies described as ‘paranoid’ (Kirsh et al 2010, Sager and James 2005), stereotypical views present in broader societal discourse (e.g the media) were perceived where they were not existent in the specific workplace, reflecting the concept of internalised stigma (Brohan et al 2010).

Perceptions of fairness as a mediator

The line of argument developed through the process of meta-ethnography has found an increased body of evidence which broadly substantiates the model proposed by Dunstan and MacEachen (2014) in suggesting that co-workers’ judgements of fairness mediate the relationship between factors in the RTW process and support behaviours.

Fairness in the workplace is more commonly referred to in organisational research as organisational justice (Greenberg and Colquitt 2013). Further, perceptions of organisational justice have been found by Messer and White (2006) to positively affect organisational citizenship behaviours (OCBs). These are actions performed by employees that go beyond their job description for the benefit of either the organisation itself or for individuals within the organisation including co-workers e.g. re-arranging one’s work hours to allow another colleague to take annual leave. While OCBs performed for the benefit of co-workers have not directly been described as social support, there do seem to be a number of similarities in their definitions and thus Messer and White’s research (2006) further supports the line of argument that judgements of fairness affect social support provision.

Implications for practice and policy

There are a broad range of situations discussed in this review in which a perception of unfair work accommodations may be made and consequently lead to the restriction of social support. From these examples, it is possible to make some suggestions as to how co-workers’ perceptions of fairness may be changed. Of key importance to many instances in which unfairness was perceived, was a lack of understanding of the RTW plans, and of the returning worker’s condition. It appears essential therefore that formal communication is improved in the workplace; communication of the RTW plans ought to be explicit rather than spread through rumours which restrict the provision of appropriate social support (Dunstan and MacEachen 2013), and include a focus on encouraging support and tackling negative stereotypes. Co-workers can be included in the discussion of elements of RTW plans in order that they have a say regarding any extra work they are required to take on.

Although it may be reasonable to recommend supervisors improve formal communication regarding RTW plans, it is the employee’s right to decide whether to disclose information about their health to their employer and co-workers (Equality Act; Great Britain 2010). Furthermore it is unclear whether concealing or revealing a health problem, particularly a stigmatizing one, is more conducive to social support (Dunstan and MacEachen 2013, Kirsh et al 2012).

An additional recommendation would be to ensure supervisors are aware of the importance of their role both in promoting clear communication and also in modelling supportive behaviours. This may support the cultivation of a workplace culture in which social support is the norm and is fairly exchanged in times of need. As the supervisor appears to have such an influential role in developing a culture of support it may be fruitful for future reviews to seek to synthesise understanding of the factors affecting social support provided by supervisors in the RTW process.

The findings of this review and recommendations developed on their basis may additionally influence the work of practitioners in England and Wales’ new Fit for Work Service (Department for Work and Pensions, 2015) which the College of Occupational Therapists (2014) has identified as an emerging area in which occupational therapists may gain employment. The Service will allow companies and GPs to refer employees who have been absent due to sickness for an occupational health assessment in which a RTW plan will be developed so that both employee and employer can receive the support they need. The current review emphasises the need for employers to improve communication within the workplace, encourage co-worker support and include co-workers in RTW planning. Occupational therapists in work-support positions will have an important role in advising employers to adopt such changes.

The findings of this review also reinforce the importance of anti-stigma mental health campaigns and those that aim to improve awareness of mental health problems such as the UK’s Department of Health funded Time to Change campaign (Henderson et al 2012) as a lack of understanding of mental health conditions was a key factor identified as restricting the provision of social support within the workplace.


All studies were appraised to be of either medium or good quality. However there was an absence in many studies of a consideration of the researcher’s assumptions, or relationship with the research. Reflexivity is of great importance when conducting qualitative research, particularly within a constructivist paradigm, as it allows the reader to fully appreciate how the interpretations presented have been constructed (Gough 2003). This lack of reflexivity may reduce the credibility of the initial authors’ interpretations on which this review is based and highlights the need for more reflexivity in this field of qualitative research.

An additional limitation is that most of the studies included in the review discussed social support as a one-dimensional concept yet many academics adopt House’s notion of a multifaceted social support (House 1981) comprising at least four different types of support. Accordingly the use of the blanket term social support in the selected studies could be seen as a weakness of this review, as the findings lack specificity and the rich detail that could be gained through the division of social support into its component parts. Future research would benefit from specifying the particular types of support that are affected by factors in the RTW process.


This review offers a detailed and extensive account of the factors consistently found to affect social support in the RTW process of individuals who have been absent due to sickness. These factors can be categorised into those relating to individual workplace actors, the condition, the culture of the workplace, and the quality of the organisation of the RTW plan. The review also offers new understanding regarding the association between perceptions of organisational justice and social support behaviours. A line of argument synthesis was used to demonstrate that the factors identified affect social support both directly and indirectly via the co-workers’ judgement of the fairness of work accommodations. Occupational therapists and other professionals involved in RTW planning could enhance the social support provided by co-workers, and consequently the success of an employee’s return by addressing the factors that may lead to a judgement of unfair work accommodations.

Yvette Wagner, MSc Health through Occupation; and Dr. Josh Cameron, Principal Lecturer in Occupational Therapy


Articles selected for inclusion in review

Baril R, Clarke J, Friesen M, Stock S, Cole D, the Work Ready group (2003) Management of return-to-work programs for workers with musculoskeletal disorders: a qualitative study in three Canadian Provinces. Social Science and Medicine, 57, 2101-2114.

Choi M, Kim H-R, Lee J, Lee H-E, Byun J, Won JU (2014) Workers’ experiences with compensated sick leave due to musculoskeletal disorder: a qualitative study. Annals of Occupational and Environmental Medicine [online], 26(33). Available at: Accessed on: 10.01.15.

Corbiere M, Renard M, St-Arnaud L, Coutu M-F, Negrini A, Sauve G, Lecomte T (2014) Union Perceptions of factors related to the return to work of employees with depression. Journal of Occupational Rehabilitation [online]. Available at: Accessed on: 10.01.15.

Dunstan DA, MacEachen E (2013) Bearing the brunt: co-workers’ experiences of work reintegration processes. Journal of Occupational Rehabilitation, 23(1), 44-54.

Kirsh B, Slack T, King CA (2012) The nature and impact of stigma towards injured workers. Journal of Occupational Rehabilitation, 22, 143-154.

Kosny A, Lifshen M, Pugliese D, Majesky G, Kramer D, Steenstra I, Soklaridis S, Carrasco C (2012) Buddies in Bad Times? The Role of Co-workers After a Work-Related Injury. Journal of Occupational Rehabilitation, 23(3), 438-449.

Lysaght RM, Larmour-Trode S (2008) An exploration of social support as a factor in the return-to-work process. Work, 30(3), 255-266.

Mansfield E, Stergiou-Kita M, Kirsh B, Colantonio A (2014) After the storm: The social relations of return to work following electrical injury. Qualitative Health Research, 24(9), 1183-1197.

Nordqvist C, Holmqvist C, Alexanderson K (2003) Views of laypersons on the role employers play in return to work when sick-listed. Journal of Occupational Rehabilitation, 13(1), 11-20.

Norlund S, Fjellman-Wiklund A, Nordin M, Stenlund T, Ahlgren C (2013) Personal resources and support when regaining the ability to work: an interview study with exhaustion disorder patients. Journal of Occupational Rehabilitation, 23(2), 270-279.

Sager L, James C (2005) Injured workers’ perspectives of their rehabilitation process under the New South Wales workers compensation system. Australian Occupational Therapy Journal, 52, 127-135.

Stergiou-Kita M, Mansfield E, Dalter L, Colantonio A (2014a) Good Intentions? Employer representative conceptualizations and, challenges to the workplace accommodation process: The case of electrical injuries. Employee Responsibilities and Rights Journal [online]. Available at: Accessed on: 10.01.15.

Stergiou-Kita M, Mansfield E, Bayley M, Cassidy JD, Colantonio A, Gomez M, Jechke M, Kirsh B, Kristman V, Moody J, Vartanian O (2014b) Returning to work after electrical injuries: workers’ perspectives and advice to others. Journal of Burn Care and Research, 35(6), 498-507.

Tjulin A, MacEachen E, Edvardsson Stiwne, Ekberg K (2011a) The social interaction of return to work explored from co-workers experiences. Disability and Rehabilitation, 33(21-22), 1979-1989.

Tjulin A, MacEachen E, Ekberg K (2010) Exploring workplace actors experiences of the social organization of return-to-work. Journal of Occupational Rehabilitation, 20(3), 311-321.

Tjulin A, MacEachen E, Ekberg K (2011b) Exploring the meaning of early contact in return-to-work from workplace actors’ perspective. Disability and rehabilitation, 33(2), 137-145.

Other references

Bisiker J, Millinchip K (2007) Developing a work rehabilitation project: ‘Equal pathways to work’. British Journal of Occupational Therapy, 70(6), 259-263.

Black DC, Frost D (2011) Health at work – an independent review of sickness absence. Norwich: The Stationary Office.

Brohan E, Elgie R, Sartorius N and Thornicroft G (2010) Self-stigma, empowerment and perceived discrimination among people with schizophrenia in 14 European countries: the GAMIAN-Europe study. Schizophrenia Research, 122(1-3), 232-238.

Brouwer S, Reneman MF, Bultmann U, van der Klink JJ, Groothoff JW (2010). A prospective study of return to work across health conditions: perceived work attitude, self-efficacy and perceived social support. Journal of Occupational Rehabilitation, 20(1), 104-112.

Cesario S, Morin K, Santa-Donato A (2002) Evaluating the level of evidence of qualitative research. Journal of Obstetric, Gynecologic and Neonatal Nursing, 31(6), 708-714.College of Occupational Therapists (2014) Health and Work Service heralds new job opportunities for OTs. Available at: Accessed on: 27.07.14.

Coole C, Drummond A, Watson P, Worthington E, Hammond A (2013) Supporting workers with musculoskeletal conditions: a survey of United Kingdom occupational therapists’ communications with patients and their employers. British Journal of Occupational Therapy, 76(11), 478–486.Critical Appraisal Skills Programme (2013) Qualitative Research Checklist. Available at: Accessed on: 26.07.14.

Department for Work and Pensions (2015) Fit for Work: guidance for employers. Available at: Accessed on: 27.05.15.Dunstan DA, MacEachen E (2014) A Theoretical Model of Co-worker Responses to Work Reintegration Processes. Journal of Occupational Rehabilitation, 24(2), 189-198.

Eakin J, MacEachen E, Clarke J (2003) ‘Playing it smart’ with return to work: Small workplace experience under Ontario’s policy of self-reliance and early return. Policy and Practice in Health and Safety, 1(2), 20-41.

Gough B (2003) Deconstructing reflexivity. In: Finlay L and Gough B, eds. Reflexivity: A practical guide for researchers in health and social sciences. Oxford: Blackwell Science Ltd. 2003. 21–35

Great Britain. Parliament (2010) Equality Act 2010. London: The Stationery Office.

Greenberg J, Colquitt JA (2013) Handbook of Organizational Justice. Oxford: Psychology Press.

Henderson C, Corker E, Lewis-Holmes E, Hamilton A, Flach C, Rose D et al (2012) England’s Time to Change Antistigma Campaign: One-Year Outcomes of Service User-Rated Experiences of Discrimination. Psychiatric Services, 63(5), 451-457

House JS (1981) Work, stress and social support. Reading, MA: Addison-Wesley.

Inman J, McGurk E, Chadwick J (2007) Is Vocational Rehabilitation a Transition to Recovery? British Journal of Occupational Therapy, 70(2), 60-66.Messer BAE, White FA (2006) Employees’ mood, perceptions of fairness, and organizational citizenship behaviour. Journal of Business and Psychology, 21(1), 65-82.

Noblit GW, Hare RD (1988) Meta-Ethnography: Synthesizing Qualitative Studies. London: Sage publications. Paterson BL, Thorne SE, Canam C, Jillings C (2001) Meta-Study of Qualitative Health Research. London: SAGE Publications.Waddell G, Burton AK (2006) Is work good for your health and well-being? London: The Stationary Office.





Love Not Money – Experiences of volunteering at non-League football clubs through personal narrative and photography


Fred Randall 2004On 16 October 2004 I attended a match between Rustington and Bosham in Division Three of the Sussex County Football League. Due to the low level of this fixture there was no official admission charge, but instead an elderly gentleman walked around the perimeter of the pitch offering a battered wooden collecting box towards the small number of spectators, with ‘Thanks from Rustington FC’ written on it. The gentleman’s name was Fred Randall, and he was the Club President. At that moment I began to wonder what motivated Fred, and others like him, to volunteer at thousands of other similar clubs up and down what is referred to as the ‘Non League Football Pyramid’ – the term ‘non-League’ referring to those clubs that do not comprise the 92 that constitute the Premier and Football Leagues.

I have been photographing and writing about non-League football and its culture for over a decade, and my initial contact upon turning up at a ground with a camera, invariably a couple of hours before kick-off, is often with whoever happens to be around at the time. I find myself chatting with someone who has a story to tell: about the history of the club, their own involvement, and how there are always odd jobs to do, especially during the close season.

These people are the lifeblood of non-League clubs everywhere, without whom many simply would not be able to function, and would cease to exist. They give their time willingly and voluntarily, and ask for little in return. They do what they do for the love of ‘their’ club, not for any monetary reward, often taking on multiple roles for many years. This study aimed to explore the experiences of a fairly random sample of club volunteers, through the medium of personal narrative and photography.


Between June 2010 and October 2012 I photographed and recorded a total of 94 interviews with club officials and volunteers, 74 of whom were featured in the resulting book, ‘Love Not Money’ (Bauckham, 2012). A small proportion of those interviewed were already known to me, or were individuals I was already aware of through various sources. These I contacted in advance and they agreed to participate. The vast majority however, were simply individuals I struck up a conversation with on visiting a club: if I felt they might be worthy of inclusion I explained the project and asked if they would mind me recording our conversation and posing for a photograph. The interviews were largely unstructured and of variable duration, I had no prompts written down, but did ask about how they first got involved with the club, and how their volunteering evolved. I also wanted to know what motivated them to persevere and what non-League football meant to them. The interviews were later transcribed and roughly ‘coded’ for any themes that emerged from them. I won’t pretend that my sampling or analysis was particularly rigorous, but I did nevertheless gather a large amount of useful qualitative data.


Those interviewed had begun volunteering via a variety of routes, and many had been involved for a significant period of time, often decades. One interviewee for example, had been involved for 65 years and the ground had been named after him:

“This club means everything to me; it’s been my life, and still is my life … We brought this new ground and they were thinking about a name. Someone came up with the idea of calling it ‘Bloomfields’ after me, and away it went. It’s quite a legacy” (Derrick Bloomfield, President, Needham Market FC)


Overwhelmingly, the majority of those interviewed stated that they loved Football. Several had previously played for the club, whilst others had familial connections: perhaps having been first taken to watch their local club by a parent and/or grandparent. A number were supporters who had originally been asked to ‘help out’, perhaps initially by selling raffle tickets or manning the turnstiles, and their role had developed from there. Some had first got involved through their children, playing for one of junior teams run by many clubs. In some instances there was evidence of a reaction to the commodification of Football, and the Premier League in particular. Non-League football – “real football” – was viewed as unpretentious by comparison, where supporters were more valued and not isolated from the players and club officials. An overwhelming sense of solidarity was also evident.

“If anything needs doing we all turn our hands to it. It’s like all clubs at this level; everybody does a bit of everything. People muck in and if you’re prepared to do a little bit, they warm to you. It’s a great atmosphere and you get the football thrown in for free” (Neil Speight, Secretary, East Thurrock United FC)

Other motivations were largely altruistic: wanting to make a difference for example, and “give something back”; whilst one volunteer described his “civic pride” when the club he volunteered for enjoyed a good run in the FA Cup. A couple of interviewees had been officially recognised for contributions within their local community: Mamun Chowdhury (Sporting Bengal United FC) and Lincoln Moses (Continental Star FC) both having received MBEs for their work with Asian and Black communities in East London and the West Midlands respectively. Continental Star for example, is a Social Enterprise and Registered Charity, using football as a vehicle to help those often marginalised and considered by others as hard to reach. As Moses himself stated: “At Continental Star, the ‘FC’ stands for Family Club”.


Love Not Money - Table 1 RolesThe number of roles was varied, with some taking on multiple tasks (Table 1). One volunteer described himself as a “General Dogsbody”. Whilst such a comment may have been tongue-in-cheek to some extent, it might also be interpreted as a sense of being under-valued and taken for granted.

There was evidence of volunteers ‘donating’ existing skills, ranging from administrative to groundkeeping and construction, to assist in the day-to-day running of the club. In some cases, new skills had been acquired through volunteering, arguably none more so than in the case of twins Brian and Roger Phillips of Corinthian-Casuals FC, who despite working for the Inland Revenue, and having no building experience, virtually built the Club’s ground single-handedly. Their story also highlights how individuals can be left to carry on once others lose interest:

“We were asked to come and give a hand one weekend, putting up a post and rail around the pitch. Then other jobs developed and we were roped in to help out with those. Everybody was very enthusiastic at the start but after a year or two it fell away and we were left to get on with it”.

The Phillips twins still volunteer seven days a week and take on multiple tasks on matchdays: “We do it because it makes a difference, but at the end of the day we wouldn’t do it if we didn’t enjoy it”.

Despite the general consensus that those who continued to volunteer did so because they enjoyed it, this was not universal, and for some that original motivation had diminished. Some described themselves as “being lumbered”; whilst another described his role as a “life sentence”. Certainly there was a feeling, albeit amongst a minority, that they felt unable to step down from their role because there was no-one to take their place. In some cases this resulted in a ‘disagreeable obligation’, leading to stress, and in one notable case, ill-health.


Love Not Money - Table 2 ValuesMotivations for volunteering

Rochester et al. (2012) cite Halman & Moor (1994) who identified four key values that underpin volunteering, namely Altruism or Beneficence; Solidarity; Reciprocity; and Equality and Social Justice (Table 2). It was the Solidarity value that appeared most prevalent amongst those interviewed: a feeling of identification with a group or society; and a responsibility to contribute to the well-being of the group and its other members.

Volunteering as leisure

It seems logical to consider volunteering as a leisure time activity, and there is a general assumption that leisure activities carry positive benefits in terms of health, quality of life, and well-being (Caldwell, 2005).

“Leisure is uncoerced, contextually framed activity engaged in during free time, which people want to do and, using their abilities and resources, actually do in either a satisfying or a fulfilling  way (or both)” (Stebbins, 2013)

The above definition of ‘Leisure’ by Robert Stebbins, is merely one of many. He refers to leisure being uncoerced, and with free time being given voluntarily. However, it is also important to consider ‘obligation’ – after all in order to volunteer one is obliged to give up a portion of free time, and it is assumed that such an obligation is therefore an agreeable one. Nevertheless, it is worth considering the following questions, and aspects of volunteering that might have negative consequences:

  • Is all leisure (and volunteering) uncoerced?
  • Are there circumstances when it may be considered ‘work’?
  • When does an agreeable obligation become a disagreeable one?
  • When does ‘leisure’ become ‘semi-leisure’ … and even ‘anti-leisure’?

Stebbins (2000) notes that key volunteer roles often consist of major responsibilities, which often consume considerable time. Those who fill them sometimes become weary of such demands, but whilst they might like to abandon the role for a less hectic and demanding activity, they realise that in some instances there is no-one to replace them. As a consequence they become: “stuck, possibly burnt out, forced by obligation to remain indefinitely in what has by this time turned into anti-leisure”. This certainly appeared to be the case in a couple of examples from this study, highlighting that as well as the often cited positive rewards associated with volunteering, there are also costs, particularly with organizations reliant on a relatively small number of individuals.

The Serious Leisure Perspective

Love Not Money - Table 3 Serious LeisureThe Serious Leisure Perspective (Stebbins, 2007a) actually incorporates three forms of leisure activity: Serious, Casual, and Project-based (Table 3). Volunteering can take any of these three forms, and often volunteering activity ‘zig-zags’ between the three.

Whereas Project-based leisure tends to related to short-term, time-constrained volunteering and therefore not particularly relevant to those participating in this study; examples of both Casual, and particularly Serious leisure were evident. Most of those interviewed had begun volunteering in a casual manner, but in a number of cases this had progressed to the serious form, and they had found what Stebbins describes as a ‘leisure career’ through their volunteering activity.

Love Not Money - Table 4 Distinguishing QualitiesMany certainly met the ‘Six Distinguishing Qualities’ of Serious leisure defined by Stebbins (Table 4). Moreover, just as any career ultimately comes to end, a minority were clearly approaching the end of theirs, as they felt the need to step back, “wind down”, reverting to a more casual approach or ‘retiring’ altogether, even if they found it difficult to do so. Such movement, back and forth along a casual-serious leisure continuum, is described by Patterson (2001).

Stebbins (2007b) has also defined a leisure-based theoretic typology of volunteers and volunteering incorporating all three forms of the Serious Leisure Perspective. It centres on both formal and informal volunteering – usually non-organisational volunteer activity. He suggests that volunteer activities are motivated, in part, by one of six types of interest in activities, but that are also ‘mixed types’: where volunteer activities bridge two or more of these types. A significant number of non-League football volunteers appeared to meet the mixed type descriptor: in particular a combination of the ‘People/Popular’ (e.g. volunteering with people, fund-raising) and ‘Things/Material’ (e.g. donation of trade and skills; building things) type volunteers described by Stebbins.


The personal narratives from this study on non-League football volunteers certainly appear to conform to several theoretical perspectives of volunteering, particularly those as a leisure activity. There are clearly many positive attributes and ‘rewards’ that come through volunteering, and associated benefits to health and well-being beyond the scope of this article. Nevertheless, it is equally important to recognise that there can be ‘costs’ and negative consequences, particularly where individuals feel unappreciated and unsupported; and where what was once an agreeable obligation, has become a disagreeable one.

David Bauckham, 
Senior Lecturer, School of Health Sciences
The book ‘Love Not Money’ (2012) is available from Centre Circle Publishing:


Bauckham DH, 2012. Love Not Money. Eastbourne: Centre Circle Publishing.

Caldwell LL. 2005. Leisure and health: why is leisure therapeutic? British Journal of Guidance & Counselling. 33 (1) 7-26.

Patterson I. 2001. Serious Leisure as a Positive Contributor to Social Inclusion for People with Intellectual Disabilities. World Leisure Journal. 43 (3) 16-24.

Rochester C, A Ellis Paine, and S Howlett. 2012. Volunteering and Society in the 21st Century. Basingstoke: Palgrave Macmillan.

Stebbins RA. 2000. Obligation as an Aspect of Leisure Experience. Journal of Leisure Research. 32 (1) 152-155.

Stebbins RA. 2007a. Serious Leisure: A Perspective for Our Time. New Jersey: Transaction Publishers.

Stebbins RA. 2007b. Leisure Reflections, No. 16: A leisure-based, theoretic typology of volunteers and volunteering. Leisure Studies Association Newsletter 78.

Stebbins RA. 2013. Unpaid work of love: defining the work-leisure axis of volunteering. Leisure Studies. 32 (3) 339-345.


The Impact of Volunteering on Nurse Education


This article describes some of the experiences of a small group of second year adult nursing students during an optional module – Student Community Engagement (SCE), at the School of Health Sciences, University of Brighton.  Their experience was reflected on in the context of being a volunteer and working with socially excluded groups of children and young people. Their reflections are discussed in relation to the importation of new skills into their wider course work and are interpreted using educational and communication theory.


In year two of the BSc Nursing undergraduate curricula students are able to choose between a range of optional modules.  Students electing to participate with the SCE module are then invited to a ‘matching event’ which is jointly coordinated by staff from the Active Student Volunteering Service, based with University of Brighton’s Careers Service.  Local voluntary organizations are invited to discuss potential learning opportunities within their organizations and to attract motivated volunteers.  Significantly, many of the volunteering placements are not for profit organizations with a social care orientation, this offers the students a distinct change from their usual health based organizations.

Early in the placement students are asked to complete a Strengths, Weaknesses, Opportunities and Threats (SWOT) analysis and a learning agreement which are later reflected upon.  One of the key aims of the module is the recognition and importation of transferable skills and knowledge back into their existing repertoire of professional nursing skills.   The module’s summative assessment constitutes a short report describing the host organization and its function, an account of how they have spent their time, an impression of their effectiveness in their volunteering role, the benefits of their activity to the community and the skills and attributes developed while volunteering within the organization.  The module is supported by six theoretical sessions looking at volunteering, active citizenship, relevant social policy and project planning.   Two action learning sets are facilitated by senior lecturers, making use of narratives, story-telling and the use of reflective dialogue.

The Volunteering Learning Opportunity

At our matching event a range of volunteering options was presented, including the opportunity to volunteer with CCHF – All About Kids (previously Children’s Country Holiday Fund).   As students training in the adult branch of nursing we rarely get to work with directly with children, this experience was viewed as an opportunity to broaden our skill-set with this specific group and to challenge ourselves by working with children from disadvantaged backgrounds with potentially difficult behavior.

CCHF was established in 1884 and is a registered charity.  It aims to give disadvantaged children respite and residential breaks in order to improve their quality of life and to help them to recognize their own potential (CCHF 2013).  It focuses on children aged seven to eleven living mainly within London or the immediate surrounding areas; it relies totally on donations from the public and corporate partners to fund their activities. Children can be referred by anyone who works with disadvantaged children such as teachers and social workers; their eligibility is then assessed against the CCHF criteria.  This criteria includes a range of factors such as poverty, abuse, low self-esteem, children that care for a family member, or other family factors such as having a parent who abuses substances or who has a mental health issue.  Each child is gently monitored for the duration of the camp due to their circumstances.  CCHF works closely with statutory organizations in order to address any issues or concerns encountered throughout the duration of the camp.  As such the experience represented our first opportunity to patrol the tensions of a safeguarding role.

It is estimated that of the 1.1million families living on low income in London in 2010 / 11; 60% could not afford to take their children away for a week’s holiday (London’s poverty profile, 2011). Cummins et al (2013) suggest that children that are brought up in poverty can be at greater risk of suffering from low self-esteem. This is one of the key areas that the charity works to improve. Their annual report demonstrates that many of the children that arrive on camp with low self-esteem and leave feeling much happier and far more confident (CCHF All About Kids, 2013).

The wider community also benefits from those accessing the opportunity as children with greater confidence and self-belief are more likely to have better health and are also less likely to engage in criminal activities (Chen et al 2013).  Knapp et al (2011) supports this notion by suggesting that individuals who suffer from low self-esteem in childhood are likely to have worse economic prospects in adulthood.  Conversely research by the Child Poverty Action Group (2013) using Department of Education data, suggests that children receiving free school meals attain an average of 1.7 grades lower than wealthier students.

A King’s Fund report (Buck et al 2013) suggests that in our modern society volunteers are sometimes under appreciated and used instead of paid workers – however this was found not be the case at CCHF where they have always relied upon the goodwill of volunteers to enable their existence.  The role of the volunteer in society has become ever more important as a result of reforms put in place by the Health and Social Care Act, 2012, (Naylor et al 2013).  As such, volunteering is now a key part of the current governmental strategy, and is included in their ‘Big Society’ vision. This aims to encourage people to participate in local projects, by giving them more power to influence the running of services and facilities in their community (Cabinet Office 2010).  It believes that the inhabitants of communities understand the needs of the local area most, and this will help create “attractive and thriving” neighbourhoods.

Volunteering is traditionally associated with the concept of altruism (Haski-Leventhal 2009) – the motivational selfless desire to increase the wellbeing of others.   Alternatively, Carpenter and Myers (2010) argue that the main drive for volunteering is not altruism, but the perceived benefits, whether these are career benefits or purely self-satisfaction.  Sigmund and Hauert (2002) take this point further, suggesting that any act in which both parties gain is more co-operation than altruism, as both the volunteer and the organization benefit from the partnership. CCHF utilize this sense of co-operation in their organization; the vast majority of the workforce is made up from volunteers.   Most of them are students who are hoping to both enjoy the experience and improve their future career prospects.

Personal Reflections

Amy’s reflection  Before camp I had little experience of working with children or even managing large groups of people.  At one point I managed a group of 15 challenging children for an hour with another first time volunteer.  The children were well behaved, safe and actually enjoyed themselves, and at no point did I find myself worrying or panicing.  Later on in the day, the senior leader praised at CCHF this activity, which helped to build my confidence for future situations on camp. Although these individuals were children, my confidence in leading larger groups of adults has definitely improved and this has made a noticeable difference in clinical practice, for example, when managing a bay of patients in a ward.

A potential weakness that I discovered during the camp that I had not previously identified in the SWOT analysis was my hesitance when trying to find the words to set and enforce interpersonal boundaries with the children and young people.   As the week progressed I began to see the consequences of not doing so, I therefore realized that I needed to take some advice from our senior leader, who encouraged a certain amount of careful risk taking.  This gave me the confidence to gradually experiment by trying different approaches within the interaction’s, in doing so I eventually over-rode my fears of causing offence or humiliating myself.  I found that upholding boundaries did not alter the relationship that I had with the child, nor reduce their respect for my position; it was mostly accepted and often helped to harmonize power structures in the group.  Reflecting on this process has helped me in subsequent nursing roles, for example, at timely moments I am more confident when offering health promotion advice, such as advice to reduce smoking, drinking or other harmful activities that I anticipated I would be perceived in an authoritarian or negative light.

One of the most significant experiences that occurred to me during the camp was dealing with a disobedient child and their parents.  A particular child had consistently demonstrated aggressive behavior towards others in the early days of the camp.   Bullying is not tolerated and so it became my responsibility to liaise with the parent about the child’s behavior and return them to home ahead of schedule. The parents were understandably upset and concerned when I contacted them; I myself felt awkward and did not want to exacerbate the situation further.   I tried to remain calm, be professional and listened attentively to the parents; eventually we came to a mutual agreement.   The way in which I dealt with this situation and the camp as a whole, reinforced my own ‘self-efficacy’, this is the belief in one’s own capabilities to produce a desired effect by one’s own actions (Lopez and Snyder 2011).

Laura’s reflection  Although quite personal, my experience and subsequent reflections have helped me to surface, confront and alter some unconscious attitudes, raising my self-awareness in the process.  The demographics of children on the camp was incredibly diverse as was their range of ethnicities and socio-economic backgrounds.  This was in contrast to my own quite stable upbringing and I felt a little under confident in my abilities to engage and relate to them.  One of the competencies for entry to their register, the NMC requires that:

“All nurses must practice in a holistic, non-judgmental, caring and sensitive manner that avoids assumptions, supports social inclusion; recognizes and respects individual choice; and acknowledges diversity.” (NMC 2013)

At first I found the encounters quite difficult, I just wasn’t consciously judging the children and young people, just uncertain as whether they would accept me and how the interactions would go.  However, after I had spent some time with the children I realized that most of my pre-conceived fears were in fact unfounded, and by the end of the camp my I sensed that my confidence had changed.  During my nursing career I will encounter people from all walks of life; this episode forced me to think about  my own attitude and values.   I believe this realisation equates to a shift in values which will stay with me for years to come.

I feel that working with children that may be distressed or upset during the camp has improved my communication skills, insight and confidence in clinical areas where I might encounter and treat children on a regular basis.  Having not previously worked with children, I found being able to interact and to make appropriate interventions, a valuable leap for me which in turn forms a valuable part of a child’s development.

Sam’s reflection  By the end of the camp I felt proud to be a part of each child’s accomplishments and saying goodbye to them was one of the hardest things that I experienced.  As a caring professional it is vital to maintain healthy relationships with the patients and people that you work with.    Making use of attachment theory Skovholt and Trotter-Mathison (2011), helpfully describe the ‘caring cycle’ as consisting of four stages: Empathetic Attachment, Active Involvement, Felt Separation and finally, Re-creation.  I related this model to the time with the children and it is directly transferable to the relationships I form in my nursing practice.

Knowledge and use of the model has helped me to think differently about the process of attachment.  Failure to reach the recreation stage of the caring cycle may indicate an unwanted level of attachment or unprofessional attitudes.  My belief is that I will now be able to take part in further camps, being able to recreate healthy, professional relationships again and again.

My experience of volunteering has brought to the fore many considerations into my own education as a student nurse and responsibilities as a future health care practitioner and leader.   Due to the personal circumstances of the children at CCHF, I became more aware the importance of safeguarding practices, namely remaining vigilant for possible signs abuse and malnourishment.  Being responsible for a group of children meant observing for any issues and reporting them immediately; this aspect of social care applies more broadly to nursing and the responsibility nurses have to the wellbeing of their patients. I have found this experience correlates with my current placement in a Community Nursing Team as we regularly see vulnerable adult patients in their own homes.

Facilitator’s reflection  Having supported the students during other academic sessions over the previous year I felt I understood the students well enough to sense the impact that volunteering had on them personally and on their learning.  Their sheer enthusiasm evoked a positive sense of dissonance which inspired me to try and capture and analyse their experiences.  In our action learning set I probed their narratives, asking what it was about the experience that so differed to other experiences on their course.  My overriding sense was that it was the immersive nature of the summer camp combined with their interactions with the young people that had helped to transform their attitudes towards themselves, their practice and their ability to form and maintain relationships.
To interpret the students’ experience I have found it helpful to locate their experience on a two dimensional map of ‘reality’ and ‘learning outcomes’, created by Morgan and Burrell, (1979, cited by Brockbank and McGill, 2006).  It is my view that their collective experience moved the group away from the objectivism and towards the subjectivism end of the reality dimension, and from the equilibrium towards the transformation end of the learning outcomes dimension.
Arguably, much of the learning taking place on the adult pre-registration nursing programme, such as clinical skills or anatomy and physiology, depends heavily on notions of an objective reality and maintaining the equilibrium of power structures, as per the conceptual dimensions.   Such learning reflects ‘imposed objectives, based on perceived objective reality’ (Brockbank and McGill, 2006).   At the ‘equilibrium’ end of the dimension, the status quo and ‘taken for granted’ ideas go unchallenged and are therefore upheld by the prevailing discourses and scripts.

My analysis is, the summer camp experience nudged the students towards the subjectivist end of the continuum as they were immersed in a new social world and a common language became ‘understood and continuously reconstructed, reproduced and transformed through interaction’ with the children and young people, (Brockbank and McGill, 2006).   The students’ perspectives appear to have been altered as a consequence of the developmental experience, pushing them away from the stability of the equilibrium element towards the transformative end of the scale.

This is consistent with a symbolic interactionist perspective on perceptions of self and on developing relationships.  Symbolic interactionism can be defined as ‘a theory of human communication that can account for the process by which everyday nursing situations become defined and redefined’, (Stevenson, Grieves and Stein-Parbury, 2004). Symbolic exchanges occurred during their interactions and these appear to have shaped understandings and cemented social relationships.  For a short time they had been thrown off their usual student nurse ‘script’ (Stevenson, Grieves and Stein-Parbury, 2004), into a completely different domain and the students had adapted to the challenge and risen to the responsibility.  In doing so they had achieved new understandings by being part of the young people’s world, using their language, interpreting and making meaning of their communication.


Johnson and Webb (1995, cited by Stevenson, Grieves and Stein-Parbury, 2004) found that ‘nurses do judge the social worth of people and that such judgments do have moral consequences’. However, in our students’ case we have seen these relatively negative evaluations were negotiated and renegotiated throughout their interactions.  Once such attitudes are brought into awareness through the process of reflection, corrective thoughts were assumed.   In thinking about the collective experience of the group, all three students have processed their experience and engaged with their inner dialogue to make meaning of what occurred in their week with CCHF.  Significantly, by processing the subjective cues that occurred, small and hopefully lasting shifts and transformations of attitude occurred impacting on their outlook and learning.

Warren Stewart Senior Lecturer School of Health Sciences, University of Brighton, Laura Brown Adult Nursing BSc (Hons) student, Sam Harris Adult Nursing BSc (Hons) student and Amy Isaac Adult Nursing BSc (Hons) student


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Stevenson, C., Grieves, M., and Stein-Parbury, J. (2004). Patient and Person, Empowering Interpersonal Relationships in Nursing. Elsevier, Oxford.


Thoughts from the ground looking upwards

10976404-enfermedad-del-cerebro-humano-y-el-rompecabezas-de-inteligencia-con-un-laberinto-azul-brillante-y-elI love to write. I even wrote a book once. Of course I never allowed anyone to read it and it has long since been packed away, abandoned in a box somewhere in the loft. This, however, is a short and heartfelt piece I’d very much like to share with you. My name is Deborah and I’m about to start my PhD full time here at Brighton. I say about to start, in fact I’ve been planning starting this for the last year and for a quiet and rather shy person this has been some seriously scary stuff. I’m not talking about the academic side, with two degrees, a Masters and eleven years of teaching experience, that side doesn’t worry me. It was the whole concept of moving out of my comfort zone that left me literally quaking in my boots.

To put this into perspective, I’ve performed and supervised minor research projects before and it’s a process my methodical and problem solving brain really enjoys, but a PhD? Over the years since my first degree in 1989 people have often asked me when I was going to start my PhD and my answer was always the same, ‘never’, which is strange in itself since my personal mantra has long been ‘never say never’. Exactly! Where’s the logic in that and why would I feel the need to always say never even though the thought had crossed my mind many times? Why had I always dismissed it?

It all started almost a year to the day in July last year when I told my departmental head I was interested in performing some research and starting a PhD. Other people weren’t surprised at my decision but to me it was an absolutely enormous and almost unthinkable step that seemingly came out of nowhere on the spur of the moment. After all those years of saying never I jumped from ‘I’d like to do some research’ to a full blown PhD in about two minutes flat. So you’re probably thinking what is your problem here, why is it such a big deal? Well in one single word, ‘confidence’, or I could stretch it to two and say ‘self belief’, both are inextricably entwined and lead to the same agonising fear of taking that bold step out of the shadows and into the spot light. The same fear that made me give up my ballet as a child, prevented me from persevering with my book or showcasing my photography skills. After much soul searching I realised my routine stock PhD answer of ‘never’, was in truth the answer to a completely different unasked question: ‘Are you brave enough to do a PhD?’ Therein lay the real issue. I was scared stiff.

Over the years as a part time member of the academic staff I never really had much contact with the Clinical Research Centre (CRC) team even during my time as a Senior Lecturer and Clinical Manager. Although the concept of evidence based practice was very real and thoroughly embraced, ‘proper’ researchers were something that existed somewhere else. My work was highly clinical and student/patient based and I spent most of my time at the Leaf Hospital, I saw the career researchers as aloof and elitist, I saw myself as belonging to a different academic world and quite simply of no possible interest to them. They spoke a level of research language I didn’t understand or feel included in, symbolically they are housed on the top floor, even finding the right door and climbing those steep narrow staircases to reach the CRC was tricky, like a psychological maze. I use the term maze, rather than labarynth because to my apprehensive mind just physically finding them hidden away up in the roof seemed designed to make me take wrong turns, to put me off and get lost just as a maze is designed to do, rather than facilitate exploration like a labarynth. Maybe I’m just particularly sensitive but I know I’m not the only one who faces these fears and insecurities when in comes to moving out of our usual professional comfort zone.

What I’ve realised is that this was all in my head. I saw the PhD process as so much more than simply a large piece of heavily assessed academic work, I created my own barriers. I saw it as a process for laying myself bare to public criticism, of risking being seen as inadequate. I was worried about setbacks and failures and I realised it was this negative mental block that had been holding me back all these years, not just from my PhD, but from so many other things. I was scared of starting at the bottom again, of being ignorant and unsure, of getting it wrong and looking daft, of not understanding the language and process. Ultimately I was so used to being good at what I currently do that I was scared of having these new fledgling researcher abilities judged in what I perceived as a harsh and critical environment, one where I wasn’t sure I belonged or indeed was even wanted.

I have to say I hang my head in shame at these ignorant admissions.

One year on the CRC could not have been more supportive or helpful. Far from being elitist and aloof, once I physically found the right staircase and door the rooms were airy and light, I was made to feel included and valued, offered coffee, a quiet space to work if I needed it and abundant support and advice that has led me to feel that not only can I do this, but I that I will do this well.

With their support and advice I’ve come a long way even though I’ve not officially started yet, I know where I’m going, have formed my supervisory team and with their collective experience and help I’ve been shaping and forming my research questions and proposal ready to hit the ground running in October. Their support and the informal mentoring from my work colleagues and the research network has changed my whole outlook on the challenges ahead and I’m genuinely full of excitement about starting my PhD in October. Despite being the new girl I’ve been made to feel like an integral part of the research community, even though I’ve not even really began and I can’t thank them enough.

If I had to pick a moment when it all started to change for me it was when I took a deep breath last October and plunged headlong into attending the advertised research meetings, presentations and workshops, (work schedule allowing) and with each event my confidence, self belief and sense of belonging began to grow. I realised I was not alone in this and yes I would make mistakes, but that I’d put them right and yes I would have to stand up and defend my research from harsh and maybe unjust criticism, but with the right support and training it would be good research and both it and myself would stand up to that test and become stronger for it. I may still be on the ground looking upwards, but the climb doesn’t seem anywhere near so steep now that I know the research team are there to support and guide me on the path to being an early career researcher.

I’ll leave you with one final thought. As teachers we are constantly evaluating not just the content and application of our educational work but also the outcome. We all have well proven strategies to assess whether the pedagogic approach we have chosen for our students was effective, but how many of us really ever sit down and deeply assess our own development? I did, it was scary, I shook the box and this short piece of writing is part of the result. How do I know I’ve made a difference to my development? I know because one year ago I would never have submitted this for publication.

Deborah Whitham, Clinical Educator, Leaf Hospital, University of Brighton


Inaugural Conference of British Autoethnography Keynote. Autoethnography: threat and promise


A very warm welcome to all of you to this, the Inaugural Conference of British Autoethnography and the launch of the book Contemporary British Autoethnography (Short, Turner & Grant 2013). Before I start the keynote proper, I’ll tell you something of the history behind this conference. Three or four years ago Dr Nigel Short and I had a few conversations that acknowledged the significance of the North American luminaries of autoethnography, whose work contributed much to our learning the methodology and craft. At the same time, we recognised that it would be good to produce a British book to showcase the work that was being done on this side of the Atlantic. So in 2011, Nigel, Dr Lydia Turner and I met, rather opportunistically, on the Falmer site of the University of Brighton and had our first book planning meeting.

A little later, we started to meet with a few other people from our university who, like us, were already involved in the approach, including Drs Jess Moriarty and Mike Hayler, and we called our group ‘Altogether for Autoethnography’. We used this group in a critically supportive way  to help us with our respective works in progress. Two good and important things happened: with regard to the book, after having no luck with a couple of publishing houses, Mike Hayler managed to facilitate a contract with Sense Publishers in Rotterdam in Professor Ivor Goodson’s Studies in Professional Life and Work series. The second thing was that Professor Avril Loveless from our Education Research Centre gave us the support of her school in hosting this conference. As editors, Nigel, Lydia and I sought out and secured the contributors for the book, all distinguished British autoethnographers.

Okay, I’ll start off with a story about a  scenario that in my experience highlights a fairly typical and important issue, central to the uptake of autoethnography as a respectable and legitimate methodology.  Imagine a gathering of interested academics working in qualitative inquiry at a UK university somewhere in recent times. I’ve been invited along to contribute to a discussion about autoethnography and am one of the few people present who has published in the approach. It’s a small gathering but an international one and, in addition to us autoethnographers, there are a several academics working in narrative inquiry and qualitative research more generally and a small number of postgraduate students who are considering using autoethnography in their doctorate and who seem simultaneously attracted to and fearful of the approach.

At an early point in the meeting, one of the doctoral students raises a predictable and understandable concern. She doesn’t express it quite as succinctly as this, but essentially it’s about how to use autoethnography without transgressing the implicit and explicit rules of the academy around what constitutes proper qualitative research and proper qualitative researcher decorum. Put more simply, she asks ‘how am I supposed to break the organisational rules around what I should write about, and how I should write it, without getting into trouble?’

Her words reflect an ever-present risk for new and seasoned autoethnographers in the context of the universities many of them work in. We live in times characterised by what Sparkes (2013) and others refer to as ‘methodological fundamentalism; times in which a narrow, conservative view of what constitutes scientific inquiry has insinuated itself into academic life, privileging positivist research agendas and shaping their taken-for-granted superiority as gold standard in the operating assumptions of the academy.

We also live in times  where neoliberal, new public management and audit, performance and target-driven academic cultures hold sway (Grant 2014a),  which function in the shaping of the subjectivities of academics with regard to what is valorised in the name of ‘excellence’ and ‘quality’; times where sober rationality is coded safe, proper and synonymous with tacitly accepted high standards for conducting qualitative research. And many of those affiliated to mainstream, what Mazzie and Jackson (2009) label ‘conventional’, qualitative inquiry join in this game in policing these standards. The net result is that embodied, highly reflexive, performed emotionality is often disparaged, reviled, coded dangerous and seriously transgressive, or ignored as meaningless.

Apart from the political, managerial and ideological assemblages contributing to contemporary forms of scientism shaping experiences, assumptions and behaviour in British universities, there are also more longstanding implicit rules about the management of emotion at play. These operate both in academic disciplines and the structuring of relationships in universities as bureaucratic organisations. In the early 1990s and later, the work of Stephen Fineman (1993, 2003), the organisational emotion scholar, suggested that the absence of what he described as ‘zones of expressive tolerance’ for the expression of emotion will always be to the detriment of bureaucracies. The dark side of organisations will out, somehow, despite the best rational efforts of organisational actors, so overly-rational organisations always have an emotionally transgressive underbelly.

Around the same time, in a groundbreaking text in the history of autoethnography, entitled Investigating Subjectivity, Ellis and Flaherty (1992) pointed out the wonderful irony in what was, up until then, a sociology of emotions pitched almost exclusively at a rational level. The message of these authors was let’s do the sociology of emotions emotionally, and, given the crises of representation and authority in the social and human sciences in the 1970s and 1980s, let’s not be afraid to embrace subjectivism while we’re at it. The explicit charge was to give researcher-participants centre-stage status more in qualitative research projects.

It’s difficult to ignore the great contribution of subjectivism for the social and human sciences. Witness the number of inter-related ‘turns’ in recent decades: the critically reflexive turn (eg Pillow 2003), the poststructural turn (eg Jackson and Mazzei 2009, 2012); the affective turn (Clough and Halley 2007); the narrative  turn (see Grant, Biley & Leigh-Phippard 2012). Despite this, subjectivism is constantly pathologised in various ways in many quarters in higher education and, ironically, in many quarters of qualitative research teaching and practice. A friend of mine who’s having a hard time at her university about this very issue recently suggested that charges of solipsistic ‘self-obsession’ often levelled against autoethnography and autoethnographers should be reframed as ‘generous researcher self-representational practices’.

I don’t recall hearing conventional qualitative inquiry taken to task for being ‘other-obsessed’. But, in terms of its colonialism,  I believe that this would be a reasonable charge. Much conventional qualitative inquiry seems to myself and others to be a form of voyeurism or scopophilia – a kind of qualitative porn, with researchers, and readers by implicit invitation, safely on the outside looking in, and always seeing the reassuringly familiar – which evokes a comfortable feeling of expectations being met; a form of cultural tourism that demands only safe and distanced recognition and empathy. This positions participants forever as ‘other’, with minimal or no disruption to existing socio-cultural structures, structures of power and politics, and with no passionate call to change the world (Grant 2014b; Jackson and Mazzei 2009, 2012). But of course such colonialism is effaced, obscured, denied, or disavowed in mainstream work that lacks criticality.

I frequently see examples of the above year on year in the, mostly, health-related qualitative work that I peer review for journals and research committees and in papers presented at conferences. What is notably absent in much of this work is any developed sense of critical reflexivity; any sense of what Wright Mills (1959, 2000) described over 50 years ago  as ‘the sociological imagination’: evidence of researchers’ reflexive awareness of the relationship between them and the socio-cultural and historical spaces they occupy. So, of course, important issues around power and politics are  absent from many of those texts, as are standpoint positions, and, of course, passion.

At micro, meso and macro levels, the organisations in which some of these studies take place are often treated as neutral, benign, bricks and mortar backdrops to practice, rather than socially constructed phenomena riven with tensions, contradictions and, often, plain nastiness. These organisations are left seriously under-critiqued and under theorised, or just not theorised at all.  At worst, this results in naïve realist texts which are parochial, insular and theoretically deficient.

In contrast, I guess there’s a fair number of people working within autoethnography who wear their hearts on their sleeves. For many of us, it’s not enough just to write it, or talk about our topics. We are condemned to live them – at least as much as we can, sometimes because we function as standpoint or movement scholars for our research areas, rather than, to borrow a term from Frank Furedi  (2004), simply educational technocrats. For some real and virtual audiences, this can be endearing, engaging and connecting, while for others it can confirm what a bad, unruly, dangerous, undisciplined and unscholarly lot we are, lacking distance, balance and objectivity.

But autoethnography is, according to Carolyn Ellis, meant to be unruly. It seems to me that one sure-fire way of doing autoethnography without troubling too much or breaking some of the rules of the academy game is to produce safe, anodyne, sanitised un-challenging work. I’ve read  some published papers over the last few years that purport to be autoethnographic, where culture and power structures are ‘stroked’ rather than interrogated and critiqued, or not really discussed at all. When I read them, I picture – perhaps unfairly –  the writers of these tales as nice, coherent, clean living folk caught up in some 1950s post-war consensus time warp, who  always find love, and triumph over adversity well before pyjamas, cocoa and a sensible bed-time, and confirm what a lovely and safe place the world (their world) is if you just stick to the rules, in a fair and balanced way.

At my most un-charitable, I also picture a composite metaphor to represent this kind of, to my mind pseudo-autoethnographer: how about someone who’s part Cliff Richard, with large chunks of Barbara Cartland thrown in for good measure? Producing the autoethnographic equivalent of  some distant unpopular cousin of Rock music, with all the sweaty, sexy and exciting bits removed, and the rock of course; combined with fanciful, sugar-coated romantic fiction – stories about relationships and life devoid of all the credibility, complexity, messiness and tragedy of human existence, in short with all the life removed. Fortunately, neither the book launched here today as part of this conference, nor its workshops, contain such contributions. (Apologies to Cliff Richard and Barbara Cartland fans here today, by the way).

Kitrina Douglas and David Carless (2013, 103) recently described autoethnography in terms of its ‘…past, present and future history… as a continual “coming out” – over and again – for each new student, colleague, editor, and conference delegate we encounter.’ Perhaps suggestive of Denzin and Lincoln’s (1994) moments in qualitative research more generally, Kitrina and David argue that the ‘Moments of autoethnography’s history are …. Happening simultaneously and repeatedly (in different contexts for different people) … the future of this always contested, often marginal methodology hangs in the balance, as autoethnography… seems to be always and at once a threat and a promise.’

So, while realist and literal tales share methodological space with experimental, performance and postructural work, it’s hard to seriously interrogate culture without threatening its operating assumptions. But, in terms of social justice, these threats are aimed hopefully at shaping a better world. Where there are threats to established cultures there are also boundaries. And, at the risk of over-stretching military metaphors, where there are boundaries there are border guards who police them. However, thankfully, there is also the promise of irritating insurgents, 5th columnists, quislings, resistance workers. Autoethnography threatens the stability of normative methodological practices and promises a steady stream, or perhaps torrent, of robust challenges. It also does this in relation to both its own assumptions and scholarly parameters, when these become parochial and  insular, and to those of qualitative research more generally. Hopefully all of this will be confirmed in the workshops today and is well-represented in the book.

At this point, for the benefit of delegates here who might be new to the approach, I’ll provide one possible summary of what autoethnography’s about, drawing from our book (Grant, Short & Turner 2013). Autoethnography is described as a contemporary qualitative methodology that demands unusually rigorous, multilayered levels of researcher reflexivity given that the researcher and the researched are often the same person, with the exception of pragmatic mixed methodological designs, permutations such as analytic autoethnography and what Ellis (2013) has recently described as collaborative witness or relational autoethnography.

As it strives towards the experimental, the approach demands the pursuit of creative writing practices that locate it as much in the humanities as in the social and human sciences. Autoethnography owes its existence to, among other phenomena, the narrative turn  in those disciplines and continues to be governed by critical tensions in the  philosophy of science underpinning qualitative research more generally, including in the ongoing postmodern and poststructural critiques of liberal-humanist and realist, literal representational practices of conventional qualitative research (Grant 2014b; Jackson and Mazzei 2009)

So autoethnographies that appeal to readers to believe in a coherent, reliable narrator, who assumes centre stage in a story that faithfully transmits the lived experiences of her or his identity, which progresses from a beginning to an end, co-exist with poststuctural autoethnographies that play with notions of the de-centred, disconnected, incoherent, time- and shape-shifting, constantly emerging subject. To labour a point here, autoethnographies having an implicit investment  in ‘the liberal humanist subject that is an individual person or self’ (Jackson and Mazzei 2012, 10) share genre space with autoethnographies acknowledging the historical constitution of subjectivity and the ‘entangled production of agency’ (where agency is constantly performed, enacted, emergent, contingent, rather than constituting an essential quality that someone possesses).

Tensions within the approach are also played out at the level of related assumptions about culture, culture being central to the autoethnographic agenda. In recent years, Carolyn Ellis (2004), one of the doyens of the approach, described autoethnography as research, writing, and method that connects the autobiographical and personal to the cultural. By ‘culture’ she meant the meaning construction woven in human and material contexts as people go about and through their lives.

It seems to me that this definition can lend itself to the idea of culture as a kind of folksy form of liberal social participation, where no one group is better or worse than any other, where no group stands out as particularly privileged or disadvantaged, and where people are endlessly, uncomplainingly and uncomplicatedly assimilated – woven into the quilt of life. Or at least with complaints about life that can be documented in such a way that does little to explicitly contest the pre-determined shape, texture, pattern, purpose and function of the quilt. Reflecting hegemonic cultural practices, the smooth operation and management of social, political and ideological structures remain minimally challenged or disturbed. This is arguably played out in the politics of those autoethnographic representational practices that tend more towards mainstream, conventional qualitative inquiry.

In contrast, and without wishing to suggest an overly simplistic binary between conventional and more edgy autoethnographies – we operate from and share a broad church – those autoethnographers who embrace a more critical and poststructural edge to their work might regard such representational practice as anathema to trenchant and reflexive cultural interrogation. Textual practices which expose oppressive, deadening and creativity-stifling sociocultural agendas and experiences are key in challenging cultural hegemony. To this end, autoethnographers may adopt the role of cultural trickster in employing fictional and satirical devices to highlight cultural contradictions (Grant 2013).

I believe that cultural trickster or, to use a more sober term, cultural conscience agent autoethnographers perform a valuable service in exposing the dark side, the black holes, the lacunae of cultures – the parts people are perhaps aware of in their peripheral consciousness, but, by tacitly held common consent, don’t usually talk about and don’t want to talk about. Such exposure amounts to speaking the unspoken and unspeakable and refusing cultural invisibility Short (2013).

The cultures that contribute to our subjectivities form part of taken for granted dominant discourses. From a critical theoretical perspective, dominant discourses – big stories or master narratives – discipline and routinize life and  behaviour to the extent that the margin of human unpredictability, or margin of freedom, increasingly narrows (Grant and Leigh-Phippard 2014). From postmodern and poststructural critical standpoints, Calhoun and Karaganis (2001, 194) argue that ‘…criticism and theory are best used to increase the size of this margin, breaking the grip – if in only occasional ways – of predictable  action and habit’.

I think that ‘breaking the grip’ is a nice metaphorical device to guide the purpose of the kind of autoethnography that  some of write and read.  We want to continue  to develop our sustained, small contribution to breaking the grip of  insidious, potentially or actually harmful, discursively grounded cultural and representational practices, as these often escape critical academic, professional and public gaze.

Speaking the usually unspeakable,  and breaking the grip, goes with a reflexive concern over the use of language, where the assumption of language as a neutral vehicle for reporting research is explicitly rejected. Those with aspirations towards autoethnography should take writing and representational practices very seriously indeed and regard writing as a craft they need to work at, just as if they were practising a musical instrument in order to improve and gain mastery over it. So research is not written up. Instead, knowledge is created through writing: draft after draft after draft after draft…..

Representational practices include a concern for representational  ethical concerns, as voiced eloquently by Lydia Turner and Andrew Sparkes in our book. Compared with other research approaches which follow a tick-box approach to ethics, autoethnography throws up myriad ethical complexities. Taking writing, representational and ethical practices seriously also implies a concern about literary style. Poetic forms, the explicit deployment of metaphor, messy texts, experimental writing and the disruption of linear time  are just a few of the devices and tropes that characterise contemporary autoethnographic work.

By breaking the grip, speaking the unspeakable, experimenting with form, structure and content, and constantly pushing back the representational boundaries, autoethnographers increase cultural tolerance for the expression of emotion: for what can be said about this area of cultural life, this organisation, this institution, this discipline, this group of people. In this context, autoethnographic studies function as acts of resistance to challenge cultural operating assumptions and are well represented in the book. Doing all of this puts the embodied, visceral person into writing, which Jess Moriarty describes  in her chapter as putting the blood back into what would otherwise be Halal texts.

In summary, autoethnography reinforces the importance of storytelling and personal narrative in the human and social sciences. Accepting that in an important sense readers are ventriloquists, shaping what autoethnographies say for them, autoethnographic storytelling helps them not only learn about the personal lives of autoethnographers – lived experience if you’re a traditionalist or liberal humanist, witness accounts maybe if you’re a postructuralist – but also about the social and cultural worlds in which we are all situated in myriad and diverse ways. It  gives people – autoethnographers and their audiences – the cultural and symbolic capital and narrative equipment to shape and re-story their lives. This underscores the narrative ethical dimension of the approach: as morality tales, autoethnographies arguably provide resources to help people both interrogate and challenge aspects of their worlds and themselves in them, and work towards re-shaping these worlds in the interests of social justice.

For those reasons, autoethnography significantly contributes to the history, practice, witnessing and interpretation of living. This and the strong focus on writing, representational practices, cultural critique and reflexivity, makes the approach important for emerging and experienced narrative scholars, and for those interested in oral and life history, biography and autobiography methods, for researchers, scholars and students across the humanities, social sciences, communication, education, social work and health, and for qualitative researchers generally. Conventional qualitative researchers would do well to consider using autoethnographic strands in their work, to add another, rich dimension to it.

And what of its future? Its future’s in its present. You can sing and use music as the basis for  autoethnography, something that David Carless and Kitrina Douglas are involved in; you can express it through paintings, photographs; through innovation at the level of method, methodology and theory. For example David and Kitrina utilise and value personal stories in the book; Jess Moriarty writes autoethnodrama; Nigel Short and Mike Hayler build on the metaphor of the journey to construct their work; Ken Gale and Jonathan Wyatt develop the theory and practice of assemblage autoethnography; David Gilbourne and Phillip Marshall use fiction to glimpse the essence of self; Brett Smith and myself focus on the culture of the academy, respectively storying artificial persons and deploying satire; Andrew Sparkes writes meta-autoethnography and Lydia Turner reflexively explores relational ethics.

You can also take autoethnography in a different relational direction, in the form of what Ellis (2013) recently described as ‘collaborative witnessing’. This is something that Helen Leigh-Phippard, Nigel Short, Laetitia Zeeman and myself have been involved in for some years now. I’ll tell you about some of our work at this point, starting with its context.

The language used in mental health interventions traps people in stories. These stories may misrepresent them, socially disadvantage them, disempower them, discriminate against and stigmatise them (Thornicroft 2006; Grant, Biley & Leigh-Phippard 2012).

From a narrative ethical perspective, great care should be taken over how people are represented. However, some communities may claim an exclusive right to define and portray individuals in particular ways, with unfortunate consequences. These include policy, professional and empirical mental health representations of people that are reductionist, doing immense disservice to  emotional and contextual lives.

This highlights the issue of language as a site of the struggle over representation and meaning. People create myriad meanings about themselves and others through engaging with each other in everyday life practices. The ways in which we can be abusively or humanely represented, or can represent ourselves in texts, can never be exhausted, as language and nuanced meaning are infinite and ever-shifting dialogic and cultural resources (Holquist 2002). This facilitates the constant emergence of different communities of textual meaning making (Frank 1995; Richardson 1997), implicating the relevance of both narrative ethics for representational practices (Adams  2008) and re-storying to reflexively resist normative constructions of identity (Grant and Zeeman 2012; Grant and Leigh-Phippard 2014; Grant, Leigh-Phippard & Short in review).

In contrast to representational plurality and differentiation, it is notable that a reductionist trend in the representation of human suffering in the mainstream mental health literature seems to go constantly unchallenged, generally speaking. With a handful of exceptions, including my own and Nigel Short’s work and my work with Nigel and Helen Leigh-Phippard (eg Chase-Grey and Grant 2005; Grant et al. 2008; Short 2005), readers would be hard put to spot a real, fleshed-out, life-contextualised person in much of the mainstream British policy-informed mental health literature. Instead, individuals with problems in living are usually described as sanitized bundles of diagnostic labels, symptoms, emotions, cognitions, behaviours or treatment outcomes.

In this context, I believe that the work I’m currently involved with Helen and Nigel positions it within a social justice agenda. The overall research project is entitled The Book, The Stories, The people. It proceeded from a text that we published in 2011 called Our Encounters with Madness (Grant, Biley & Walker 2011). After textual analysis of the book and interviews with contributors about the experiences associated with writing their chapters, we used creative non-fiction short stories in a relational autoethnographic design as collaborative witness accounts of our experiences of institutional psychiatry. These stories were decentred to the extent that we all have what might be described as hybrid emerging identities: so we’re scholars-mental health academics-survivors-mental health practitioners… We strive to avoid writing from one privileged, or transcendent, identity position.

This has resulted in autoethnographic book chapters (Grant 2013; Grant and Leigh-Phippard 2014), and autoethnographic and practice development papers (Grant 2013; Grant and Leigh-Phippard 2014; Grant, Biley & Leigh-Phippard 2012; Grant, Leigh-Phippard & Short in review; Grant et al. 2012; Taylor, Leigh-Phippard & Grant 2014). In this work, we role-modelled narrative restorying (Grant and Zeeman 2012)  to liberate ourselves from the narrative entrapment of institutional psychiatry, from stories told about us and others which are disabling, pathologizing and discriminatory, and constructed in the name of mental health ‘care’ and ‘treatment’; for us, mental health survival is a social justice issue.

I hope our work functions as exemplars of autoethnography in exposing oppressive cultures and cultural contradictions, which enable writers to re-story themselves into betters futures, both individually and as part of liberating storied communities. Thus is the hegemony of biomedical reductionism and institutional psychiatry challenged, highlighting the therapeutic and political possiblities of autoethnography.

Readers can use those stories in lots of ways: for those in recovery and survival, for example, to use as exemplars, not to copy directly, but as a possibility focus to orientate and use selectively as narrative templates and resources for their own life restorying (Grant, Leigh-Phippard & Short in review).

Turning from our work, present and future developments in autoethnography can also include pushing the colonial-busting poststructural manifesto of Alecia Jackson and Lisa Mazzei (2009, 2012), to include more respect paid to the unconscious, the unspoken – voicing the in-between, dreams and silences, shifting the focus away from conventional literal representational practices (Grant 2014b).

Qualitative research, including autoethnography,  grounded in the sufficiency of the literal voice neglects important inter-related issues. Briefly, these include the historical, contextual and discursive circumstances involved in the production and performance of voice; the positioning of subjects within structures of power; and the ambiguity and contradictions within  and between individuals and their lives.  All of this makes assumptions of coherent voice and similarity between research participants problematic (Grant 2014b).

Voice cannot be considered an innocent and straightforward way to account for a ‘self’. Power, subjectivity and desire shape the ways in which individuals speak of their present and their lives overall. Further, consciousness can never be fully present to itself through language (Jackson and Mazzei 2009, 2012). The light of human meaning is always refracted  through the dark glass of language and language is always unstable. Any expectation of indisputable meaning is confounded by  words forever constituted by myriad significatory traces of other words.

If it is accepted that there can therefore never be a clear unambiguous statement of anything, then all stories have the status of simply being one story in place of another (Mazzei 2009). Written and spoken voice is forever condemned to insufficiency: As MacLure (2009, 100) argues, ‘Neither can deliver the fullness and immediacy that fuels the dream of presence’.

On these grounds, the act of writing participant and researcher voice from a poststructural qualitative research perspective constitutes the performance of provisional ‘truth’. There is nothing before or behind language use and such performance is about speaking and writing oneself and others into existence within relations of power. Following Deleuze, Davies (2009) argues that an individual, rather than being a self-conscious ‘I’, is a location where thoughts may emerge. The act of writing opens the writer to becoming what is not yet known and what can never be contained in words, as Jonathan Wyatt and Ken Gale admirably demonstrate in the book. Writing should therefore aspire to the constitution of other, different, ways of knowing and seeing, rather than to the constant rehearsal of the familiar (Davies 2009; Richardson & St Pierre 2005).

Autoethnographic theatre is already happening through, for example, the work of David Gilbourne, David Llewellyn, Phil Marshall and Jess Moriarty. I’d like to see more organisational reflexive performance – autoethnodramas of academe – to build on the counter-discursive challenging of the neoliberal, new public management agenda. This would complement the work of Andrew Sparkes, Brett Smith, myself and others with, I hope, lots of satire included. Some aspects of our universities desperately need lampooning.
Overall, I’d like to see more of us refusing to separate our personal histories from our academic histories; more of us writing back against the grain of the taken for granted and helping others to do so too, in storying a future marked by compassion, solidarity, communion, change, justice and hope.

I hope you all enjoy and profit from the day.

Alec Grant, PhD, Reader in Narrative Mental Health, School of Health Sciences


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Therapeutic Photography


There is accumulated evidence that art through many mediums has an intrinsic value in modern healthcare provision (Staricoff 2004). McNiff (1981) endorses the position that all art forms are valid and a variety of creative expression that stimulates all the senses is therapeutically beneficial. Warren (2007) argues that such meaningful avenues of expression build resilience, support recovery and are unlimited in therapeutic value. He argues that individuals can be empowered through the creative process in the creation of an image, word, sound or movement which gives an individual affirmation to the ontologically secure position that ‘I exist. I have meaning’.

Photography provides vast opportunities within mental health care for therapeutic interventions (Bach 2001; Glover-Graf and Miller 2006; Smith and Grant 2014; Weiser 2014 accessed 1 June 2014). Throughout this essay I will explore the value of photography as a public art form and its benefits within mental health care. I will draw evidence from both literature, personal experience and practice, in using photography as a therapeutic tool.

Photography as public art

Photos are everywhere; with the digitalisation of the 21st Century there has been a change in in the accessibility of photography. Previous to the appearance of modern technology, photography was a highly technical medium that was not accessible to all. Nowadays advances in technology mean that photography is much more widely accessible; rather than requiring expensive equipment and a darkroom, taking pictures only requires a disposable camera or mobile phone. The tradition of family photo albums has largely been replaced through social network sites and cyber storage, and the rise in accessibility of the Internet means that visual images captured through photography can be shared with wider audiences (PhotoVoice accessed 1 June 2014).

Photography in healthcare

The use of photography in healthcare can be dated back to the work of Dr Hugh Diamond who used photography with psychiatric patients in the mid-nineteenth century, and by the mid-twentieth century ‘phototherapy’ was used for both physical and psychological health care (Wheeler 2012). The works of Jo Spence (Fig.1), further strengthened the impact of photography as a therapeutic intervention. Her controversial works in the 1980s used photography as a medium to explore and make sense of her own experience in healthcare whilst undergoing cancer treatment (Dennett and Spence accessed 1 June 2014).

NaishImg1Figure 1. Jo Spence and Terry Dennett, The Picture of Health? 1982-86

The formal use of ‘Phototherapy’, which aims to improve people’s social and empathic sensitivity, requires some minimal training (Smith and Grant 2014; Weiser 1999; Weiser accessed June 2014). However the use of less specific therapeutic interventions in healthcare using photography requires no formalised training. The benefits of photography within healthcare are extensive due to the variety of processes involved, such as taking and processing photos, looking at old personal photos and exploring photographic images taken by others. The ensuing therapeutic advantages include providing support for individuals to: explore self identity, better understand and explore the social context behind images, aid memory, use as a tool to communicate and creatively express emotions through creativity (Bach 2001; Fryrear 1980; Glover-Graf and Miller 2006; Weiser accessed 1 June 2014; Wheeler 2012).

The use of photography as a therapeutic tool within mental health care holds particular value in the exploration of self and self-identity. A significant factor amongst high proportions of individuals who have experienced mental health issues is a ‘negative self–image’ is (Glover-Graf and Miller 2006). The use of photography in exploring self-image can support an individual to develop self-knowledge and create a positive self-image, which in turn impacts on confidence and self-esteem (Weiser 2014 at). In addition, using photography to explore self-identity induces conversations that allow an individual to control how they tell their story and validates their own experience (Bach 2001, PhotoVoice accessed 1 June 2014).

Photography can provide a transformative narrative to enable people experiencing mental distress to engage in dialogue and explore meanings and their significance (PhotoVoice accessed 1 June 2014) – to, in short enable people to make sense of their worlds (Martin 1999). Furthermore, photography can provide a medium to communicate and express what cannot be verbalised. For people who are experiencing mental distress this can be of particular value. This is particularly well demonstrated through John Keedy’s (2012, accessed 1 June 2014) ‘it’s hardly noticeable’ exhibition (Fig.2). Keedy uses photography to express experiences of, in his terms, ‘unspecified general anxiety’. His images provide an insight into this experience.

naish-img2Figure 2.  John Keedy ‘It’s Hardly Noticeable’ VIII, 2012

My use of photography in the Allsorts youth project

I have used photography in my own life as a therapeutic intervention in a number of settings and have observed the benefits of photography in others. For the past nine years I have worked both on a voluntary and employed basis at Allsorts youth project, based in Brighton. Allsorts supports young people aged 13 to 26 who identify as lesbian, gay, bisexual, transgender or unsure of their sexuality or gender orientation (LGBTU). Although identifying as LGBTU is not a mental health issue, people who do so are at greater risk and are more likely to experience mental health issues due to discrimination in the context of a long history of LGBTU oppression within social structures (Mental Health Foundation accessed 2 June 2014; NHS choice accessed 1 June 2014).

Allsorts, places great importance on the use of art in its mental health and well-being programmes, through media such as music, creative writing and visual arts. Photography has been used extensively within Allsorts to affirm identity, build confidence, raise self-esteem, and challenge social constructs and normative notions such as heteronormativity cisgender bias. In addition to the individual therapeutic benefits of using photography as an art form, the images produced are very often published and used in campaigns to raise awareness of the LGBTU issues in the wider community. This adds a further dimension to the therapeutic benefit of photography for the young people involved, in the way that it helps them build on their confidence and self-esteem.

Identity is a key issue for LGBTU young people who attend Allsorts as this often conflicts with heteronormative and cisgendered biased social structures, causing oppression and isolation (Butler 1993; Mayberry 2013). Inevitably, an LGBTU identity can become the focus of a person’s identification. The social power of heterosexual cisgenderd identity is normalised, and LGBTB people are ‘othered’ through social discourses, for example ‘the gay doctor’ (Beasley 2005). In order to support young people to recognise that they do not have to be solely defined by their sexual orientation or gender identity, Allsorts worked collaboratively with Star Peers to produce a photo campaign that recognised that LGBTU people were defined by more than their sexuality or gender (Fig 3, accessed 1 June 2014). The project used self-portraits and words with the phrase ‘I am…’ that defined individuals in terms other than that of their LGBT status.

naish-img3Figure 3. Allsorts & StarPeers ‘I am…’ 2013

Whilst working with young people and taking photos of their portraits using words to define themselves, I noticed that they initially struggled to find phrases or words that were separate from their LGBTU identity. This offered opportunities for open dialogue with young people around their identity and what it meant to them.

Further, this was the basis of a further project using photography, to explore with young people what Brighton meant to them. During the ‘what Brighton means to me’ (photos unpublished) project, I supported young people in creating photos that told a story about their relationship with Brighton as their home. Throughout this project I observed the multifaceted benefits of photography as an art form. The process of taking the photos provided young people with an opportunity to support and encourage each other, strengthening their relationships. Whereas other art forms such as drawing or painting can initially be quite daunting for people who feel they have no creative ability, photography essentially simply requires capturing images. Them realising that they were able to create images through the use of cameras this boosted the confidence of the young people involved in creative expression. Furthermore the opportunity to explore Brighton rather than staying at the youth centre created a fun and enjoyable experience and the dialogue of telling their story initiated a vast range of conversational subjects. For some, Brighton meant excitement, community and home. For others, Brighton was place of safety and sanctuary in its diversity and acceptance of the LGBT community. Through sharing their experiencesof the images they created, the young people were able to add context to their identity and those experiences.
A significant photography project produced by Allsorts was ‘HumanBeing:BeingHuman’, (Allsorts 2014, accessed 1 June 2014) in which young Transgender people used photography with autoethnographical text to tell their own stories, in an exploration of self-identity. Whilst I was not directly involved in the production of this project it did serve as a tool to have a meaningful discussion with a young person through exploration of the photos.

During one of Allsorts drop-in sessions I was looking through HumanBeing:BeingHuman’ ‘with a transgendered female, Emma aged 19 (pseudonym used to protect confidentiality). Emma commented on one of the ‘non-recognisable self-portraits’, saying that she wished she could be ‘non-recognisable’. I asked Emma to expand on this, which gave her opportunity to tell her story. Emma has only recently joined Allsorts and had not disclosed her gender identity anyone outside of the facility. While Allsorts provided her with a safe space in which she could wear makeup, be known as ‘Emma’ and referred to with the pronoun ‘she’, outside of Allsorts Emma is known by her birth name and referred to as male.

We had a long discussion exploring Emma’s two conflicting identities. This discussion in itself was therapeutic for her, as she had not had the opportunity to discuss this before. In addition Emma said that HumanBeing:BeingHuman gave her hope, insight into the fact that she is not alone and a determination to pursue her identified gender as a female. This experience highlighted to me the importance of sharing stories and experiences in order to support individuals in the wider community. Photography provides a medium through which oppressed minority groups such as LGBTU communities become visible:

Without the visual identity we have no community, no support network, no movement. Making ourselves visible is a continual process.
(Joan Biren 1983, Cited in Muholi 2010, 5)

Photography, heteronormativity and me

I personally enjoy photography; I find the process of capturing an image that creates meaning for me and induces an emotion or meaning for others therapeutic. I realised the significance of my own therapeutic relationship with photography through creating visual images for a photo essay earlier this year. Identifying as a lesbian and having active involvement in challenging heteronormative concepts in the last decade, I chose to write my essay on challenging stigma within mental healthcare through the experience of the LGBT community. It wasn’t until I created the photo ‘Bottled Up’ (fig.4) (Naish 2014) that I realised I had not been able to express the impact that hetronormative discourses within society had had and continues to have on me as an individual. Until that moment the notion that my sexual orientation had been oppressed, was a metaphorical concept that had no validity other than what was ‘felt’ by me. In producing the image it created a ‘concrete’ visual expression, which I have not been able to verbalise previously.

naish-img4Figure 4. Jaime Naish ‘Bottled up’ 2014

My use of photography in nursing placements

My experience in using photography is predominantly related to my work with LGBTU young people. However I have also used photography in my nursing placements, including while working in the community mental health team when my mentor and I were supporting a 52-year-old man, John (pseudonym to protect confidentiality) who had a diagnosis of generalized anxiety disorder. One of John’s coping strategies wass to visualise places where he felt safe and secure if he becomes anxious in public. However recently he had been finding it difficult to retain such an image in his mind. We discussed both what the causes of this may be and the value of a number of different techniques to support his visualization, one of which was to use photographs of images that invoked feelings of safety, to support his visualization.
When I next saw John he reported that he had had an experience of becoming anxious whilst out shopping. He had used visualisation and mindfulness as a coping strategy to get himself home, although he still found it difficult to manage his anxiety. However he did remember the suggestion of looking at photographs and picked up an old family holiday album. John was surprised to realise he had spent an hour looking through photos, enjoying and laughing at memories of him and his brothers having fun on the beach. This served as a valuable distraction tool for him. Furthermore he showed me a photo of himself and his brothers as children on the beach, which he had saved onto his phone, and said ‘this is my favorite photo – it takes me to a place where I have no worries’.


Photography provides vast opportunities within mental health care for therapeutic interventions. Its overall significance should be understood is in the context of how using the arts generally can benefit healthcare, since Other media such as literature, movement and dance, music and myriad other art forms also have significant value in both the mental and physical Healthcare arena. In nursing there is the opportunity to utilise art to add another, counterbalancing dimension to the dominant medical model. Photography is a relatively cheap and simple to use medium in which health care users can explore self-identity, and express emotions through visual creativity.

Jaime Naish, Mental Health Nursing BSc (Hons) student


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