Beauchamp & Childress’ biomedical ethics framework remains the dominant approach through which the rights and wellbeing of potential participants are foregrounded in the research process (Attfield, 2020). There has been critique that the tenets of ‘autonomy’, ‘non-maleficence’, and ‘justice’ cannot adequately address differences in adversity among participants and the populations from which they are recruited without due attention to trauma in research design (Campbell 2019). TRIRPP is aligned with B&C’s framework in so far as it can be seen to operationalise elements of it. E.g. a trauma-informed approach can be understood as an operationalisation of the tenet of ‘non-maleficence’ (not doing harm) by it’s focus on avoiding and minimising re-traumatisation, while a resilience informed approach aligns with ‘beneficence’ (doing good) through promoting resilience in research participants, as well as promoting ‘justice’ by taking forward the right to participate in research through enhanced processes that offer an egalitarian focus on equal worth and fair opportunity among people (Ebberson et al. 2012) to access healthcare, participate in the research that directs its content and delivery, and transform aspects of their adversity.

This focus on justice is vital – research has historically privileged non-maleficence over justice, leading to populations of ‘therapeutic orphans’ often deemed too vulnerable for research due to perceived dependency, diminished decisional capacity or lack of self-protective resources (Levine et al. 2004). Happily, in the UK the concept of ‘vulnerability’ has been repositioned so that research approval processes hinge not on adequacy of provision for ‘vulnerable populations’ but on assessment of  ‘regulated activities’ that may cause vulnerability (NIHR, 2012).This represents a shift from conceptualising vulnerability as a quality residing in the individual to recognising it as a feature of research contexts that can be attenuated or avoided. This focus on research contexts as sites of empowerment, resilience and – unwittingly- as potentially traumatic or vulnerability inducing – is central to the TRIRPP approach.

Attfield R. Principlism, public health and the environment. Journal of Public Health. 2020.

Campbell R, Goodman-Williams R, Javorka M. A Trauma-Informed Approach to Sexual Violence Research Ethics and Open Science. Journal of interpersonal violence. 2019;34(23-24):4765-93.

Ebbesen M, Andersen S, Pedersen BD. Further development of Beauchamp and Childress’ theory based on empirical ethics Journal of Clinical Research and Bioethics. 2012:S6-e001.

Levine C, Faden R, Grady C, Hammerschmidt D, Eckenwiler L, Sugarman J. The limitations of “vulnerability” as a protection for human research participants. Americal Journal of Bioethics. 2004;4(3):44-9.

NIHR. The Research Passport: Algorithm of Research Activity and Pre-Engagement Checks Research in the NHS: HR Good Practice Resource Pack Version 3.0 London, UK: NIHR; 2012.

Trauma blog post

In common parlance, ‘trauma’ is often defined by the nature of the event itself. Even in the psychiatry movement this can be seen – e.g. -the definition of trauma as “exposure to actual or threatened death, serious injury, or sexual violence” (American Psychiatric Association [APA], 2013, p. 271). Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5). However, this definition stands in contrast with most, not only because it defines trauma by the type of event rather than the event’s impact, but because it takes such a limited view of the types of event that constitute ‘traumatic’.

Although trauma has been defined in numerous ways across different disciplines, most trauma experts agree that trauma is the response to certain events such that ‘Individual trauma results from an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional, or spiritual well-being.

This is how SAMHSA (Substance Abuse and Mental Health Services Administration) define trauma. In keeping with most definitions, this is a functional definition – i.e. trauma is defined by its function- ie its impact – rather than any innate quality of the event(s) that precede it. This impact is often described psychologically – focusing on the experiential emotional responses of fear, helplessness and loss of control Herman J.L.(1992).

Both Herman and famous psychiatrists such as Freud understand traumatic events to be those which ‘overwhelm the ordinary human adaptations to life’ Herman J.L.(1992). This notion of ‘overwhelm’ is key – in contrast with  usual human adaptations, we experience powerful bodily and psychological responses such as disassociation. Although these responses are understood by some as a  natural and adaptive response to overwhelm (disassociation for example provides reprieve from difficult feelings and memories), the key point remains – when an event or series of events overwhelms us, and we cannot draw on usual resources to cope, then a series of trauma responses will be invoked. Similarly, traumatic stress is widely seen as a maladaptation to trauma – i.e. it occurs when the normal process of experiencing traumatic events, undergoing trauma responses and then recovering, is arrested in some way.

But where does chronic stress, chronic adversity and repeated trauma fit into this narrative? The focus on Potentially Traumatic Events (PTEs) came about to make the study of resilience easier. Yes, you read that right. A classic case of changing how we perceive reality in order to make research easier to do – more on that another time! Prior to that focus (which began in the 80s) trauma was widely accepted to include emotional responses to chronic adversity or less immediately-shocking but repeated harms. Indeed the psychological definition above is clearly congruent with chronic adversity – helplessness, fear, loss of control.

To bring chronic adversity back under the umbrella of ‘trauma’ in TRIRPP feels like an important political act. It is a reminder that chronic adversity traumatises too. It is not only the extreme and one-off acts of violence and catastrophe to which we must attend but also the impact of chronic poverty, social disenfranchisement, inadequate housing, and the powerlessness and dependency which accompany these harms.

So chronic adversity is recognised by many as a form of trauma, and they share common ground not only in terms of impact but in terms of social and psychosocial context.  I would argue that arises from a failure or absence of social support and reponse, and as such a context in which the individual is unable to act from within their usual adaptive responses and so subject to overwhelm.

This acknowledgement of chronic adversity as a form of trauma is why the resilience and social justice approach is such an important one to align with. Because resilience in the context of trauma – in the context of social injustice – is about transforming the context of that adversity. That is to say, resilience lies not within the individual but within the ability of immediate social and broader societal frameworks to provide what is needed for an adaptive response, for individuals to find strength, make positive choices, tune into what is adaptive within them even when under extreme duress. I would like to see research made into the kind of enabling environment where this can happen. That is a key part of what TRIRPP is about.

https://ncsacw.samhsa.gov/userfiles/files/SAMHSA_Trauma.pdf

Herman J.L.(1992)Trauma & Recover, Harper Collins, London p.33

Commonality between the two approaches

TI and RSJI approaches both foreground the importance of social context. Both concepts are understood as occurring within social contexts. Accordingly neither trauma nor resilience are believed to be fostered or attenuated without recognising the importance of context. TRIRPP takes the position that research itself is one such context which can be improved upon to minimise trauma and retraumatisation and to foster and maintain resilience.

Both TI and RSJI approaches explicitly recognise the concepts of trauma and resilience. The approach taken by the Centre of Resilience for Social Justice conceives of resilience as a response to and transformation of adversity – of which trauma is one recognised form. Similarly, Trauma Informed approaches explicitly acknowledge and aim to support resilience as recognised by Elliot et al. 2005.  Importantly, both approaches foreground processes that facilitate empowerment – of individuals in TI approaches and individuals and also communities in RSJI  approaches. Culture is also highlighted in both – to define meaningful outcomes as a means of fostering resilience (30) and to recognise cultural legacies and context in order to understand and respond to trauma (28). This high level of congruence tween the two approaches indicates both can be drawn on to develop Trauma and Resilience Informed Research Principles and Practice (TRIrPP).

Although trauma is understood as a deficit and resilience as an asset, this does not render them incongruent as principles. Beneficience (doing good) and non-maleficence (avoiding harm) sit alongside each other as  principles of ethical research – Beauchamp & Childress (2001) with obvious connections between resilience informed approaches as beneficent in intent and trauma informed approaches as non-maleficent.

Given the congruence of these constructs it’s not surprising that existing endeavours have explicitly brought together Trauma and Resilience. However, these generally situate trauma as a context of adversity from which resilience may emerge with interventions aiming to improve resilience among traumatised individuals such that these interventions tend to be built around trauma-informed models. Examples include the Trauma and Resiliency Informed Practice (TRIP) Programme for drug treatment staff and the Trauma Resiliency Model for psychotherapy.

TRIRPP takes the position that resilience emerges – and can be fostered – in the contexts of both trauma arising from single traumatic events and from contexts of chronic adversity, arguing as others such as Michael Ungar have, that trauma and resilience can co-exist just as can their respective principles for informed approaches to care.

Beauchamp TL, Childress JF. Principles of biomedical ethics. New York: Oxford University Press; 2001.

Elliot DE, Bjelajac P, Fallot RD, Markoff LS, Glover Reed B. Trauma-informed or trauma-denied: principles and implementation of trauma-informed services for women Journal of community psychology. 2005;33(4):461-77..

How might social inequities impact on research participation and how is TRIRPP part of the solution? Social inequities in power, money and resources have been described by Professor Michael Marmot as the avoidable drivers of social, and subsequently health, inequalities.

These inequalities mean that some individuals and communities have fewer emotional, financial, time and other resources to access health and social care services. Thus, access may be impeded by barriers such as lack of transport, language, literacy, mental health problems, ‘zero hours’ contracts which do not allow paid time to attend appointments, unpaid caring responsibilities, coercive relationships or what has been recently termed ‘digital poverty’ (characterised by inability to access the internet for a variety of reasons). It stands to reason that all these issues might equally impact on one’s ability to participate in research.

The ‘Resilience’ bit of TRIRPP takes a social justice approach to instilling resilience, adopting the approach developed here at the University of Brighton by Professor Angie Hart and colleagues in the Centre of Resilience for Social Justice Centre of Resilience for Social Justice (brighton.ac.uk). This approach to resilience recognises issues of structure, inequality and empowerment, arguing that a social justice approach to resilience must involve a transformation of the contexts in which adversity occurs.

One such context in which adversity may occur is the research context – adversity in day to day life makes participation difficult as the same barriers to accessing health and social care present. Why does this matter? Firstly there’s an ethical issue – if we do not directly attend to inequalities in ability to participate in research then we disenfranchise people from the right to participate in research. Secondly there’s a methodological issue – studies conducted only on the most enfranchised populations -the wealthy, white, educated members of society – carry huge bias.

A social justice approach to resilience means that one of the two key aims of TRIRPP is to improve access to research for disenfranchised individuals and communities, ensuring they are among the participants and that their experiences are also included when data yields evidence which in turn is used to shape interventions and services. Without deliberate steps to bring about this positive change we will continue to see what has been termed ‘intervention generated inequalities’ (IGIs) by researchers at the London School of Hygiene and Tropical Medicine (see Lorenc T, Petticrew M, Welch V, Tugwell P. What types of interventions generate inequalities? Evidence from systematic reviews. Journal of epidemiology and community health. 2013;67(2):190-3.)

Lorenc and colleagues describe how Intervention Generated Inequalities occur when research participants are drawn from the most enfranchised – how we unwittingly then develop interventions for the most enfranchised and in so doing so perpetuate or even worsen health inequalities. Designing studies to improve participation by disenfranchised groups is then a key principle of TRIRPP’s social justice approach to resilience; a principle which serves to both highlight this often-overlooked issue and to invite researchers to consider how their research designs might be improved in practice to achieve this aim.

Hi and welcome to my blog about Trauma and Resilience Informed Research Principles and Practice (TRIRPP). This is an approach to doing health and social care research that I’ve been developing since 2019 with two key aims:

1. To improve inclusivity in health and social care research – ensuring that our research conventions do not preclude participation by individuals and populations facing adversity

2. To improve the experience of participation among those facing adversity

I’ll be blogging about all things TRIRPP – why it combines Trauma AND Resilience Informed approaches to research, how it translates these from Trauma and Resilience Informed approaches to intervention, how principles become practice, what TRIRPP looks like in relation to quantitative research and how it can be enacted at different stages of the research process.