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The Development of a Torture Survivor Specific Measure of Change

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The Development of a Torture Survivor Specific Measure of Change 19 SCIENTIFIC ARTICLE Measuring change and changing measures: The development of a torture survivor specific measure of change Rebecca Horn, PhD, Andy Keefe* Abstract included in the clinical outcome tool. A Freedom from Torture is a UK-based process of discussion and testing of potential human rights organisation dedicated to the approaches led to the development of a draft treatment and rehabilitation of torture clinical outcome tool which was translated survivors. The organisation has been into 15 languages and then pilot tested with working towards the development of a 151 clients. clinical outcome tool for a number of years, The data from the pilot study was and the purpose of this paper is to (a) analysed and used to produce the final describe the process of developing the tool version of the clinical outcome tool. The and the final tool itself, and (b) to outline clinical outcome tool was formally rolled out the system which Freedom from Torture has across the organisation’s five centres in April established to collect, record and analyse the 2014. Clinicians working with adult clients data produced. have been completing it at the beginning of A review of the literature revealed that therapy and then again at regular intervals. existing measures were not appropriate for The data from the first year is currently measuring psychological and emotional being analysed, and the experiences of change amongst torture survivors; therefore clinicians, clients and interpreters of using the organisation undertook to develop a tool the clinical outcome tool are being reviewed, specifically designed for this target group. with a view to continuing to develop and The clinical outcome tool was developed improve the tool and the processes by which collaboratively by Freedom from Torture it is used. Ultimately, the data will be used to clinicians, clients, interpreters and an improve the services offered to survivors of 26, Number 2, 2016 Volume TORTURE external consultant. Initial discussions took torture in the UK. place with clinicians and clients to develop an understanding of what psychosocial Keywords: outcome measures, torture, wellbeing and psychosocial distress meant to psychology, mental health this unique population of torture survivors, and which issues and features should be Introduction Freedom from Torture has been supporting torture survivors for 30 years and is the only *) Freedom from Torture, London, UK UK-based human rights organisation Correspondence to: [email protected] dedicated to the treatment and rehabilitation 20 SCIENTIFIC ARTICLE of torture survivors. The organisation offers they need.1, 2 Assessments are also neces- services to around 1,000 survivors of torture sary to ensure that resources are well-used; per year from its centres in London, Bir- this is particularly important in times of mingham, Manchester, Newcastle and financial constraint. Glasgow. Services include psychological, and physical therapies, forensic documenta- Brief review of other outcome research tion of torture, legal and welfare advice, and with survivors of torture creative projects. Together with survivors, A number of reviews have been published of the organisation builds the capacity of the outcome research conducted with survivors judiciary and health, social and education of torture.2, 3, 4 These reviews have included services to respond to the needs of survivors studies conducted in a wide variety of of torture, advocates for improvements in the environments, including refugee camps, the conditions of survivors in the UK and holds countries in which the torture took place, torturing states to account through advocacy and countries which survivors have fled to in with international bodies, such as the United order to seek safety. Since Freedom from Nations through its Country Reporting Torture’s work is with torture survivors who Programme. have come to the UK to seek safety and The organisation has been working protection, this discussion will focus mainly towards the development of a clinical on outcome research conducted with that outcome tool for a number of years, and the population. purpose of this paper is to (a) describe the There is a general consensus in the process of developing the tool and the final literature that there has been little research tool itself, and (b) to outline the system into the outcomes of psychological services which Freedom from Torture has established for torture survivors, and much of that which to collect, record and analyse the data has been conducted is flawed. The main produced. limitations are outlined below. The trustees, managers and practition- ers within Freedom from Torture recognise Too narrow a range of outcome measures/ the need to assess the ways in which clients’ indicators of wellbeing have been used: This is wellbeing is influenced by their engagement the weakness cited most often in relation to with Freedom from Torture services. outcome studies conducted with torture Essentially, it is an “exercise in survivors.3, 4, 5 The wide range of ways in accountability”(p114)1 to all stakeholders, which torture impacts on subsequent including the survivors who engage with wellbeing has been noted by many authors, Freedom from Torture, donors and the and includes ‘inadequate social support, wider community of organisations provid- interpersonal and family relationships; ing services to survivors of torture. Ethi- psychological problems including shame, cally, it is essential to take measures to guilt, low self-esteem and feeling disempow- assess whether the interventions offered ered; and those related to lacking agency and have a positive impact on wellbeing, and to control in one’s life, having lost a sense of have some understanding of which compo- meaning, purpose and worth as a human nents of interventions are effective with being and having no sense of justice.4 Yet the different populations, to assist with plan- majority of outcome studies focus on mental TORTURE Volume 26, Number 2, 2016 Volume TORTURE ning and ensure that clients receive the help health, particularly symptoms of post-trau- 21 SCIENTIFIC ARTICLE matic stress disorder (PTSD). These issues, so high that it reaches the maximum level of whilst relevant in many cases, may not be the severity it is difficult to measure improve- most meaningful to the torture survivors ment; even if the client reports that they feel themselves. In addition, they may not better, they may still report the highest level capture treatment goals or the range of ways of severity on the scale. in which interventions can impact on survivors’ lives.4 Translation of tools has not been conducted adequately: In some studies, tools were not Studies neglect the contexts in which survivors assessed for conceptual validity before live, and the impact of daily stressors on their translation; in others the measures were wellbeing: Related to the above, many studies translated but their validity was not evalu- do not take into account the ongoing daily ated; and in some cases interpreters trans- stressors affecting the wellbeing of those lated the questions ‘in real time’ during the engaging in therapy,1, 3 such as news from research interviews, introducing variation in home, the process of applying for refugee the use of terms and response options.4 status, housing issues and physical health. This neglect makes it difficult to understand Lack of control groups: Without a control the ways in which the therapeutic process group it can be difficult to understand the interacts with the many other influences on extent to which any changes observed are clients’ wellbeing. Events such as bad news due to the intervention. Whilst there are from home can halt or even reverse progress challenges to conducting randomised in therapy, and so affect outcomes. “These controlled trials to assess the effectiveness of kinds of ecological factors are likely to services for torture survivors, there are influence treatment outcomes but are rarely alternatives which can be used to understand considered in research designs”(p.559).3 the impact of particular services or combina- tions of services on wellbeing, but few Assessment/measurement instruments are not outcome studies have adopted these.2, 4 validated with this group, and/or are not suitable for this population: This is another common Small sample sizes: Many studies have limitation of outcome studies with torture sample sizes which are too small to enable survivors. It is related to the first limitation comparisons to be made between different outlined here, in that tools are often diagno- groups.2, 3, 4, 5 sis-based and have been developed for use with a western population. The concepts on Insufficient comparison of treatment effectiveness 26, Number 2, 2016 Volume TORTURE which the tools are based may not be of survivors from different cultural backgrounds, meaningful outside this context, which and with different experiences: One of the would impact on their validity with other consequences of small sample sizes is that it populations. In a number of studies, tools is difficult or impossible to compare the ways were used without their validity being that different groups of survivors respond to assessed with the target population.4 A different forms of intervention. There is specific problem related to the use of great diversity amongst torture survivors in symptom-based tools not developed for use the UK, for example, in terms of life history, with torture survivors is the ‘ceiling effect’.3 cultural
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