title: Measuring change and changing measures: The development of a torture survivor specific measure of change.
abstract: Freedom from Torture is a UK-based human rights organisation dedicated to the treatment and rehabilitation of torture survivors. The organisation has been working towards the development of a clinical outcome tool for a number of years, and the purpose of this paper is to (a) describe the process of developing the tool and the final tool itself, and (b) to outline the system which Freedom from Torture has established to collect, record and analyse the data produced. A review of the literature revealed that existing measures were not appropriate for measuring psychological and emotional change amongst torture survivors; therefore the organisation undertook to develop a tool specifically designed for this target group. The clinical outcome tool was developed collaboratively by Freedom from Torture clinicians, clients, interpreters and an external consultant. Initial discussions took place with clinicians and clients to develop an understanding of what psychosocial wellbeing and psychosocial distress meant to this unique population of torture survivors, and which issues and features should be included in the clinical outcome tool. A process of discussion and testing of potential approaches led to the development of a draft clinical outcome tool which was translated into 15 languages and then pilot tested with 151 clients. The data from the pilot study was analysed and used to produce the final version of the clinical outcome tool. The clinical outcome tool was formally rolled out across the organisation's five centres in April 2014. Clinicians working with adult clients have been completing it at the beginning of therapy and then again at regular intervals. The data from the first year is currently being analysed, and the experiences of clinicians, clients and interpreters of using the clinical outcome tool are being reviewed, with a view to continuing to develop and improve the tool and the processes by which it is used. Ultimately, the data will be used to improve the services offered to survivors of torture in the UK.
authors.affiliation: Freedom from Torture, London, UK. Correspondence to: akeefe@freedomfromtorture.org.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Horn
authors.forename: Andy
authors.initials: A
authors.lastname: Keefe
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D010865:Pilot Projects; D015203:Reproducibility of Results; D013315:Stress, Psychological / Q000523:psychology*; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*; D014104:Torture / Q000523:psychology*; D006113:United Kingdom; D055815:Young Adult