TORTURE Volume 26, Number 2, 2016 19 The data from the pilot study was from the pilot study was The data from the firstyear is currentlyThe data included in the clinical outcome tool. A included in the clinical outcome tool. process of discussion and testing of potential of a draft approaches led to the development translated clinical outcome tool which was into 15 languages and then pilot tested with 151 clients. analysed and used to produce the final The version of the clinical outcome tool. formallyclinical outcome tool was rolled out April centres in five across the organisation’s with adult clients Clinicians working 2014. the beginning been completing it at of have regular intervals. therapy and then again at and the experiences of being analysed, clients and interpreters of using clinicians, the clinical outcome tool are being reviewed, and with a view to continuing to develop by which the tool and the processes improve will be used to the data Ultimately, it is used. the servicesimprove offered to survivors of torture in the UK. torture, outcome measures, Keywords: mental health psychology, Introduction Freedom from Torture has been supporting Torture Freedom from torture survivors for 30 years and is the only UK-based human rights organisation and rehabilitation to the treatment dedicated A review of the literature revealed that that revealed A review of the literature *) Freedom from Torture, London, UK London, Torture, *) Freedom from [email protected] to: existing measures were not appropriate for existing measures were measuring psychological and emotional change amongst torture survivors; therefore undertookthe organisation a tool to develop specifically designed for this target group. developed The clinical outcome tool was Torture by Freedom from collaboratively interpreters and an clients, clinicians, Initial discussions took external consultant. place with clinicians and clients to develop an understanding psychosocial of what and psychosocial distress meant to wellbeing of torturethis unique population survivors, should be and which issues and features Freedom from Torture is a UK-based is a UK-based Torture Freedom from human rights to the dedicated organisation of torture and rehabilitation treatment has been The organisation survivors. of a the development towards working clinical outcome tool for a number of years, and the purpose (a) of this paper is to the tool describe the process of developing and the final tool itself, and (b) to outline has Torture the system which Freedom from record and analyse the established to collect, produced. data change Abstract torture survivor specific measure of of measure specific survivor torture Rebecca Horn, PhD, Andy Keefe* measures: The development of a development of The measures: Measuring change and changing changing and change Measuring ARTICLE SCIENTIFIC 20 TORTURE Volume 26, Number 2, 2016 accountability”(p114) in “exercise an is it Essentially, services. Torture from Freedom with engagement their by influenced is wellbeing clients’ which in ways the to assess need the recognise Torture from Freedom within ers produced. to collect, recordandanalysethedata which Freedomfrom Torture hasestablished tool itself, and(b)tooutlinethesystem process ofdeveloping thetoolandfinal the ofthispaperisto(a)describe purpose outcome toolforanumberofyears, andthe towards thedevelopment ofaclinical Programme. Reporting Nations throughitsCountry bodies,with international suchastheUnited states toaccountthroughadvocacy torturing intheUKandholds conditions ofsurvivors of torture, advocates forimprovements inthe torespondtheneedsofsurvivors services andhealth,judiciary socialandeducation the organisation builds thecapacityof creative projects. Together withsurvivors, tion oftorture, legalandwelfareadvice, and and physical therapies, forensicdocumenta- Glasgow. includepsychological, Services mingham, Manchester, Newcastleand per year fromitscentresinLondon, Bir- oftorture toaround1,000survivors services survivors. of torture The organisation offers ning and ensure that clients receive the help help the receive clients that ensure and ning plan with to assist populations, different with effective are ofinterventions nents compo ofwhich understanding some have to and wellbeing, on impact apositive have assess whether the interventions offered to measures to take essential is it cally, Ethi oftorture. to survivors services ing provid oforganisations community wider the and donors Torture, from Freedom with engage who survivors the including The trustees, managers and practition and managers trustees, The The organisation hasbeenworking

1 to all stakeholders, stakeholders, to all - - - - - survivors. outcome studiesconductedwithtorture the weakness citedmostofteninrelation to indicators ofwellbeing have beenused: Thisis Too arange ofoutcomemeasures/ narrow limitations areoutlinedbelow. has beenconductedisflawed. Themain survivors, andmuchofthat which for torture services into theoutcomesofpsychological literature that therehasbeenlittleresearch population. on outcomeresearchconductedwiththat protection, thisdiscussionwillfocusmainly have cometotheUKseeksafetyand Torture’s who survivors work iswithtorture order toseeksafety. SinceFreedom from have fledto in whichsurvivors and countries tookplace, inwhichthetorture countries environments, includingrefugeecamps, the of studies conductedinawidevariety being andhaving nosenseofjustice. asahuman andworth meaning, purpose control inone’s life, having lostasense of ered; and andthose related to lackingagency guilt, low self-esteemandfeeling disempow- problems includingshame,psychological relationships; andfamily interpersonal and includes ‘inadequate socialsupport, wellbeing hasbeennotedbymany authors, impactsonsubsequent which torture financial constraint. constraint. financial of times in important particularly is this well-used; are resources that to ensure sary of torture. outcome researchconductedwithsurvivors A numberofreviewshave beenpublishedof with survivorsoftorture Brief review of other outcome research health, symptoms ofpost-trau- particularly ofoutcomestudiesfocus on mental majority they need. There isageneralconsensusinthe 3, 4, 5 4, 3, 2, 3, 4 3, 2, 1, 2 1, Assessments are also neces also are Assessments The widerangeofways in These reviewshave included SCIENTIFIC ARTICLE 4 Yet the - TORTURE Volume 26, Number 2, 2016 21 4 2, 4 Many studies have 2, 3, 4, 5 so high that it reaches the maximum level of level it reaches the maximum so high that - to measure improve severity it is difficult if the client reports even they feel that ment; still report they may the highest level better, of severity on the scale. has not been conducted of tools Translation not tools were In some studies, adequately: before validity assessed for conceptual in others were the measures translation; - not evalu was their validity but translated and in some cases interpreters trans- ated; during the ‘in real time’ the questions lated in introducing variation research interviews, the use of terms and response options. sample sizes which are too small enable to comparisons be to made between different groups. Small sample sizes: sample Small Insufficient comparison effectiveness of treatment of survivors backgrounds, cultural from different experiences:and with different One of the it consequences of small sample sizes is that ways is difficult or impossible to compare the different groupsthat of survivors respond to There is different forms of intervention. great diversity amongst torture survivors in in terms of life history, for example, the UK, experi- outlook, world cultural background, and post-displacement ence of torture, Without a control of control groups:Lack group it can be difficult to understand the changes observed extent to which any are Whilst there are due to the intervention. challenges to conducting randomised of controlled trials to assess the effectiveness services for torture are survivors, there alternatives which can be used to understand the impact of particular services combina- or few tions of services but on wellbeing, adopted these. outcome studies have

3 3 A 4 such as news from 1, 3 4 home, the process of applying for refugee home, health. and physical housing issues status, This neglect makes it difficult to understand in which the therapeutic process the ways other influences on interacts with the many such as bad news Events wellbeing. clients’ reverse progress from home can halt or even “These and so affect outcomes. in therapy, kinds of ecological factors likely to are but are rarely outcomes influence treatment considered in research designs”(p.559). specific problem related to the use of specific problem related for use symptom-based tools not developed with torture‘ceiling effect’. survivors is the Assessment/measurement instruments not are and/or are not suitable with this group, validated common This is another this population: for of outcome studies with torturelimitation to the first It is related limitation survivors. tools are often diagno- in that outlined here, use for been developed sis-based and have The concepts on with a western population. not be which the tools are based may which meaningful outside this context, with other impact on their validity would tools In a number of studies, populations. being without their validity used were assessed with the target population. Studies neglect the contexts in which survivors in which Studies neglect the contexts and the impact of daily stressors on their live, studies many to the above, Related wellbeing: the ongoing daily do not take into account of those stressors affecting the wellbeing engaging in therapy, matic stress disorder (PTSD). These issues, These issues, disorder (PTSD). stress matic not be the may cases, in many whilst relevant the torturemost meaningful to survivors not they may In addition, themselves. or the range of ways goals capture treatment in which interventions can impact on lives. survivors’ ARTICLE SCIENTIFIC If the symptom level reportedIf the symptom level by a client is 22 TORTURE Volume 26, Number 2, 2016 relatively short period oftime. period relatively short small, and/orifthedata iscollectedover a outcome measure, and/orifsamplesizesare arenotincluded inthe contextual factors create aconfusingpicture, especiallyif them ofpreviousdistressingevents. This can asylum processoranythat reminds factor home, adisappointingletterregardingtheir It canbesetbackby, forexample, newsfrom oftime,period isnotlinear. andtheirprogress requiretherapyover along survivors torture sufficient samplestoexploretheseissues. studies ithasnotbeenpossibletoobtain client andtreatment variables, andinmost impact onoutcomesofthemany different the are requiredinordertounderstand McFarland andKaplan effectiveness ofsurvivors. for different groups able todraw conclusions abouttreatment experiences, fewstudieshave andvery been features are: with thispopulation.interventions These theeffectivenesshelp ustounderstand of of thefeatures ofstudiesthat arelikelyto toabove,referred we candevelop asummary torture. However, drawing fromthereviews of with unequivocal relevance forsurvivors were availablemeasurement instruments The reviewoftheliterature indicated that no survivors for torture of interventions ofgood researchintotheoutcomes Characteristics outcome studies. significant challengetothoseconducting offered, andtheservices isa survivors (p557). different culturalbackgrounds ness ofdifferenttreatments forpeopleof questions remainabouttherelative effective- the recipientandtherapist, andthat ofboth the culturalandethnicbackground typeisinfluencedby response tointervention literature suggeststhat receptivityand An additionalchallengeisthat many The issueofdiversity, bothoftorture

2, 3, 5 3, 2, Very largesamplesizes 3 notethat the 2 • • • outcome research isthat itisconductedin distress. format, inordertoavoid exacerbating and discussion, rather thana’checklist’ type forexplanation and toincludeopportunities aspossible measurement toolstobeasbrief for repeated interrogations, itisnecessary problems andmay have experienced psychological/psychiatric, somatic andsocial typicallysufferfrommultiple of torture We would alsosuggestthat, sincesurvivors •  •  • from differentculturalbackgrounds. displacement –e.g. asylumstatus), and (preandpost different typesofexperiences different treatment optionsforpeoplewith example, theeffectiveness exploring of enough tomakecomparisons. variables), thesamplesizeshouldbelarge there ishighvariation onanumberof Where thepopulation isheterogeneous(i.e. appropriateness andconceptualvalidity.appropriateness a measurementtool, tostrengthencultural development ofquestionstobeincludedin Translators shouldbeinvolved inthe torture survivors themselves. survivors torture meaningandrelevancethe greatest forthe considered, thosewhichhave prioritising A broadrangeofoutcomesshouldbe and negative, onwellbeing. have asignificantinfluence, bothpositive included inameasurementtool. and development ofquestionstobe involved intheidentification ofoutcomes shouldbe Clinicians andotherpractitioners their wellbeing. refugee), andtheimpactofthiscontexton live (e.g.survivors asan asylumseekeror consider thecontextwithinwhichtorture Measurement toolsandapproachesshould studies. thanhasbeenthecaseinprevious period Outcomes shouldbeassessedover alonger A further key characteristic ofgood keycharacteristic A further 3, 5 3, 1, 3, 4 3, 1, SCIENTIFIC ARTICLE External factors can factors External 1, 3, 4 3, 1, 3, 5 3, For 3 4

TORTURE Volume 26, Number 2, 2016 23 23 Clients 1 note the many pressures note the many 3 as well as interpreters, who play a who play as interpreters, as well 2 This brief review of the field illustrates In ‘mainstreaming’ assessment of clients’ assessment of clients’ ‘mainstreaming’ In which clinicians working with torturewhich clinicians working survivors can be and the anxiety which face, potentially triggered when an additional, some For is introduced. task burdensome, the introduction of an outcome tool clinicians, can raise concerns about its purpose and how If clinicians the information will be used. the assessment tool and process as perceive and/or threatening, burdensome excessively impact on the data there will be a negative to develop therefore, It is essential, obtained. which way a in process and tool assessment an is perceived and on staff burden the minimises and longer-term both immediate to have Patel benefits for both clinicians and clients. Williams also emphasise the importance and of ensuring the assessment tool and that “need to they process is respectful of clients: their that their views are respected, feel that practitioners and that responses are valued, not them as human beings, see them and treat as objects from which to extract information required by the organisation”(p64). must feel they can be honest without the fear and must under- consequences, of negative it and how the informationstand what is for, will be stored and used. in measuring challenges involved the many the outcomes of interventions with torture important also how but survivors, it is to way. in an imperfect even start so, doing the data analysis requires specialist skills, all skills, requires specialist analysis the data It resource implications. have of which may an organisation that therefore, is essential, and is fully commit- plans for all these stages beginning.ted to the process before it is importantprogress that and outcomes, and the process byboth the outcome tool by both clinicianswhich it is used is accepted and clients, key role in generating an atmosphere of safety. of safety. an atmosphere key role in generating Patel and Williams 2 state that “[i]t is only by that state 1 Organisational commitment to the Organisational Measuring should be an outcomes integral part of the care. must be integrated assessment Practically, of the programme, into the daily routine research. not as separate Outcome measurement should be part of a process which includes analysis and reporting the and improving of the data and quality of care through education training of the providers.”(p.105). Patel Patel and Williams an organisation which values and ‘main- and which values an organisation it is not seen as so that assessment, streams’ as a fundamental part but of its ‘add-on’, an A task force of senior ongoing work was States clinicians from the United assurance quality organised to develop This criteria torture for centres. treatment principles: several task force recommended 1)  2)  3)  ARTICLE SCIENTIFIC routine measurement of all clients … that a routine measurement of all clients … that service important can start to answer are clients making? gains what questions: on average best, at size are those gains, What It least? Do some clients get worse? and at do address questions such as: can even bringlonger treatments about greater or do gains tend to changes than shorter, off?”(p107) level and using that process of assessing outcomes, services, requires the information to improve include This may of resources. allocation hiring specialist staff for certain aspects of incorporating to tasks related the process, outcome measurement in the job descrip- including tions of various staff members, clinicians who collect and (sometimes) enter time for these tasks. and allowing the data, to Time and resources must also be allocated cross-culturally to developing tasks related The of the tool. translations validated and maintenance of a data development and recording system requires IT expertise, 24 TORTURE Volume 26, Number 2, 2016 Quiroga This isexpressedwell by Jaranson and • • •  •  answer include: clinical outcometoolcouldbeusedto from Torture withthisclientgroup. effects oftheapproachtakenbyFreedom organisations receiving training) the partners, demonstrate tooutsidebodies(funders, would beusedat anorganisational level to Freedom from Torture. This information therapyofferedby individual psychological change throughtheirengagementwith thewaysunderstand inwhichadultclients clinical outcometoolwhichcouldbeusedto The aimoftheprojectwas todevelop a Context andapproach practice. develop andimprove asitisputinto a work whichwe inprogress willcontinueto survivors, but as withtorture of interventions to thechallengeofassessingeffectiveness used, notasanexampleofaperfectsolution Torture, andtheprocessbywhichitisbeing outcome tooldeveloped byFreedomfrom doingsomething”(p133).start forperfection,the scientificcriteria please you can’t doanevaluation that meetsallof ‘The bestistheenemy ofthegood.’ Even if torememberacaveatimportant by Voltaire: When developing anoutcomestudy, itis is available, thisdata shouldbecollected… Even data ifonlydescriptive ordemographic tantly, collectingdata. centresmuststart clients findmost helpful? What aspectsofthe therapeuticprocessdo intherapy? hinder progress toor contribute factors What external therapy comparedtothebeginning? How areclientsdifferentat theendof in therapy? How doclients change astheyparticipate The questionswhichdata fromthe In thispaperwe sharetheclinical

2 whowrite: “Perhaps mostimpor- a tool and process that is accepted by clients clients by accepted is that process and a tool values. and culture as such elements other and individual, an to available support and networks social the with along strengths), and abilities skills, (personal capacity human include this in apart play which Factors community. to their acontribution to make able be and oflife stresses the with cope abilities, own their to realise capacity to aperson’s refers concept in the humanitarian field. humanitarian the in concept awell-established is wellbeing Psychosocial Jaranson andQuiroga, of’starting small’In thespirit advocated by cial distress meant to this population. to this meant distress cial psychoso and wellbeing psychosocial what to understand trying by beginning and tion, popula heterogeneous) (albeit adistinct as survivors’ ‘torture treating culture; another in wellbeing psychosocial to measure tool a to develop follow would she as processes same the followed she Torture, from Freedom with tool outcome an developing In Kenya. in camps refugee and Sudan South ofCongo, Republic Democratic Uganda, northern including settings, ian humanitar many in wellbeing psychosocial to measure tools of developing experience with consultant external an as project the into brought was author first The systems. Torture from Freedom into integration its and tool of the development the both in pate to partici ready all department IT the and service translation in-house the clinicians, managers, with high, was project to the ingroupwork,participating andsoon. adapting itforusewithyoung people, clients used, itwould thenbepossibletoconsider been successfullydeveloped, anditwas being therapy.psychological Oncethistoolhad inindividual with adultsparticipating bydevelopingbegin atoolsuitableforuse As noted above, it is essential to develop to develop essential is it above, noted As The level of organisational commitment commitment oforganisational level The SCIENTIFIC ARTICLE 2 itwas plannedto 7, 8 7, It It 6

- - - - TORTURE Volume 26, Number 2, 2016 25 p113). 2 It would be relatively brief, so as not to be be relatively It would experienced by either the as burdensome not, It would client or the clinician. assess all aspects of wellbeing, therefore, only those identified as most central but by clinicians and clients. It would primarily assess outcome, rather rather primarilyIt would assess outcome, than process. It would provide a valid and reliable and a valid provide It would specified areas measure of change in by Freedom to be influenced anticipated psychological rehabilitation Torture from services. be based on understandings of It would as described by psychosocial wellbeing than on rather clients and clinicians, psychiatric diagnoses or symptom checklists. The tool would measure change in only measure change The tool would wellbeing those areas of psychosocial by psychologicalwhich can be influenced on Other issues which impact therapy. cannot be influenced but wellbeing pain directly by psychological therapy (e.g. caused by torture or other physical factors) not be included. would It would also capture those factorsIt would the extent to which/ expected to mediate speed with which a client can make progress in psychological- (mediat therapy ing factors). The process of completing the outcome The process of completing the outcome be experienced as non-invasive tool would and beneficial to the therapeutic process by be This would both clinicians and clients. and valid essential not only to ensure that also but reliable information obtained, was the use of the outcome tool being to avoid disruptive to the therapeutic relationship. i) h)  g)  c)  d) f)  e)  The process of developing the outcome tool The process of developing is summarised in Figure 1 (based on and Quiroga, Jaranson Process - - - - Following the initial conversations with the initial conversations Following It would be appropriate for male and It would female adult torture survivors from different cultures and backgrounds. It would be ‘torture specific’, meaning that meaning that ‘torture specific’, be It would reflect the experience accurately it would client Torture of the Freedom from reflect the fact that It would population. distress is not only about torture experi - also experiencesences but to of loss (due forced migration or other factors such as or disappearance of familydeath - mem experiences in the bers) and the client’s UK. development of a clinical outcome tool development and clinicians, and understood by interpret ers when they are present. Therefore, it was important thatthese groups were fully involved in the development Freedom of from clinical Torture’s outcome tool, and the process by which it would be used. A carefulslow, collaborative approach was used,with regular visits each to of the five Freedom from Torture centres get to input into the process from clients and clinicians, and ongoing discussions with clinicians by email as ideas started come to together. There were many opportunities for clini cians have to input into the process, and the firstauthor took timeto explain the decision-making each at stage, both in person during meetings each at centre, and in writing via email. The fears and con cerns of clinicians about the nature of the finaltool, and how the information gath ered would be used, were acknowledged and addressed as much as possible. This approach took time, but was essential if the finaltool and processwere to meet the needs of clinicians and clients, and be to used effectively. the clear that it was clients and clinicians, to the be central issues would following be appropriate for this context: which would a)  ARTICLE SCIENTIFIC b)  26 TORTURE Volume 26, Number 2, 2016 PHASE XI PHASE X PHASE IX PHASE VIII PHASE VII PHASE VI PHASE V PHASE IV PHASE III PHASE II PHASE I oftheprocessdeveloping aclinicaloutcometoolfor Freedomfrom Figure 1:Summary Torture Each phaseisexplained inmoredetailonthe following pages.

Roll out: collecting and recordingdata system Development ofdata entry Translation Guidance Notesdeveloped incollaboration withclinicians. ’final’Sharing toolwithclinicians, andminorchangesmade. Pilot testing–151clientsover aninemonthperiod Translation andback-translation Development ofdraftclinicaloutcometoolreadyfortesting Discussion ofpotentialitemswithinterpreters Testing withclients ofpotentialitemsandresponseformats feedback. ofrevisedideaswithcliniciansforfurther Sharing consolidated ideaswithcliniciansforfeedback Sharing Consolidation ofideasregardingcontentandprocess (n=23) users service Discussions withclinicians(n=29)andcurrent/former Review ofliterature andotherinformation Revisions madeonthebasisofpilotdata regarding process. and responseformats, development ofideas andthefurther After receivingfeedback –development ofsetpotentialitems SCIENTIFIC ARTICLE TORTURE Volume 26, Number 2, 2016 27 Discussions with translators- and transla received was used to develop a set of to develop used was received and to response formats, potential items and further the process ideas regarding develop used. be by which the tool would Phase V This process of testing and discussion, together with further feedback from clini- of a draft led to the development cians, clinical outcome tool ready for formal testing. Phase VI profession- of the tool was The draft version into each of the 15 languages ally translated since reliance on be used, in which it would the point of assessment at translation verbal introduce a source of inconsistency. would has an interpreting Torture Freedom from and its manager service, and translation using process, the translation coordinated familiartranslators who were with Freedom work. from Torture’s Phase IV highlighted the tion agencies at subtle differences in meaning which can is directly translated. occur when a word with team worked The development the to ensure that therefore, translators, captured in the meaning of each item was Phase IV with clini- shared The revised ideas were and the potential items and response cians, This involved formats out with clients. tested with 13 high-function- meeting individually two clinicians at ing clients selected by trying centres, out informally the potential alternative response formatsitems and five opinions on their and asking the clients’ also The potential items were suitability. discussed with interpreters who spoke and French, Turkish Farsi, Kurdish, Arabic, the possible to translate it was to ensure that concepts accurately. To increase understanding of the Freedom To and the client population Torture from aims of individual therapeutic interven- tions. see clinicians and clients find out what To for as the key indicators of improvement adult clients Torture Freedom from participating in individual therapy. and clients see clinicians find out what To those factorsas the main mediating (i.e. factors which a which affect the extent to client is able to make progress). concerns about the identify clinicians’ To of a clinical outcome tool development and the issues they feel need to be taken into account. Phase III and a continu- these discussions, Following the in the field, ing review of the literature paper a consultation first author developed which summarised the information obtained that and her thoughts on the outcome tool at These included suggestions on the point. as as well process of using the outcome tool, This paper was suggestions for its content. and the feedback shared with 21 clinicians, Phase II for the first The second phase was author to Torture from Freedom visit each of the five clients and clinicians, centres to meet with The aims of these meetings former clients. were: 1. the first author met with During these visits, and with 29 23 clients and former clients, clinicians. 2. 2. 3. 4. Phase I Audit and former Torture’s Freedom from a considerable had gathered Team Evaluation - to the develop relevant amount of literature so the first tools, ment of clinical outcome information. to review this task was ARTICLE SCIENTIFIC 28 TORTURE Volume 26, Number 2, 2016 tool revisedaccordingly. translator was provided andthetranslated commissioned thetool; feedbacktothefirst translations andtheseniorclinicianwho author, themanagercoordinating the ancies were discussedbetween thefirst withtheitems.translator unfamiliar Discrep- back-translated intoEnglishbyathird proof-read byasecondtranslator andthen and proof-readers. The translated toolwas of theitemswas sharedwithalltranslators authortoexplaintheintendedmeaning first translation, anda ‘glossary’ producedbythe translated version, rather thanaliteral requested torate the severityofproblems Torture clientpopulation at thetime). withintheFreedomfrom language groups English, Farsi and Tamil (thetwo largest beingadministeredin highest proportions administered in11languages, withthe Lankan.being IranianandSri The toolwas were represented, withthelargestgroups female (42clients, 27.8%). 25 nationalities male (109clients, 72.2%)andonequarter (mean age=35). were Almost three quarters completed rangedinagefrom17to59 this feedbackwas alsoincludedintheanalysis. orany otheraspectofthetool,formats and feedback onindividualitems, theresponse clinicians andclientswere askedtoprovide interpreters. Inadditiontothedata itself, of version ofthetoolwithsupport common, thiswas doneusingatranslated clinicians andclientshadalanguagein clinicians whoworked withthem. Unless was administeredto151clientsbythe version) andover ofninemonthsit aperiod were intendedtobeincludedinthefinal ‘feedback onprocess’ items(morethan The drafttoolconsistedof41items, plusthree Phase VII Each clinicianinvolved inthe pilotwas The clientswithwhomthetoolwas

identified during theinitialtesting process.identified during any majorproblemswithitems had been through feedbackfromclinicians, although Acceptability/usability: This was assessed the drafttoolwere: assessing theeffectiveness oftheelements takenintoaccountwhen The maincriteria analysis conductedonthequalitative data. out onthequantitative data, andthematic below.The ratings aresummarised in, oftheclient. basedonhis/herexperience to decidewhich ‘quarter’ theclientwould fit rough assessment; theclinicianwas justasked severity oftheclient’s problemswas avery severities ofproblems. The rating ofthe betweendiscriminate clientswithdifferent toenablethetestingofitems’partly abilityto lower levels ofpsychosocialdistress; and be usedwith, rather thanonlythosewith full rangeofclientsthat itwould eventually ensure that thetoolhadbeentestedwith able tofunctionat all). to This was partly key tasks; Extremelysevere problems–barely day-to-day,managing outsome but cancarry difficulty; Severe problems–hasdifficulty with many daily situations, even ifwithsome function well; Someproblems–abletocope rating scale(Minimalproblems–ableto completing thepilottoolusingafour-point suffered bytheclientwithwhomtheywere Severity rating ratings included inthepilotstudy, accordingtoclinician Table ofthe 1:Summary ‘wellness’ ofclients Missing data Extremely severe problems Severe problems Some problems Minimal problems A range of statistical tests were carried A rangeofstatistical testswere carried SCIENTIFIC ARTICLE 13 33 89 11 N 5 3.3 21.9 58.9 8.6 7.3 % TORTURE Volume 26, Number 2, 2016 29 deviations were reviewed, and two items and two reviewed, were deviations so a very endorsement low rate, showed version. not included in the final were Checked discrimination ability of items clients – which best discriminate between very as having assessed by clinicians severe and those assessed as being problems, which discriminatedThose well. relatively more these groups were best between to change. likely to be sensitive between Checked correlations (Pearson) not necessary two It was to have items. A items measuring the same issue. items which was correlation between was consid- at the p=.01 level significant ered to be high. Checked internal consistency of items each item correlated with other well – how The factors items and the total score. whether the item considered here were correlated with the total score poorly (less than .2) and whether the reliability the scale would alpha) of (Cronbach’s These removed. increase if this item was criteria applied to three items. Conducted factor analysis to find out whether the tool assessed one single factor factorsThree with or a number of factors. of greater than 2.5 were an eigenvalue greater identified (13 with an eigenvalue Six items did not load highly (i.e. than 1). of the three main greater than .4) onto any factors (varimax rotation). 2.  2.  3.  4.  5. made about which items to Decisions were and which to retain based on eliminate review of the whole pattern of findings, than on one single element of the rather This process resulted in a reduction analysis. ‘feedback plus three to obtain from 41 items, ‘feedback to 21 items plus one on process’ a One of the 21 items was on process’. to all answers your general question (‘Given things say you would how these questions, Various statistical procedures were used procedures were statistical Various Checked for endorsement frequency of a very If an item had high endorse- items. a high propor- that (indicating ment rate ‘very tion of clients experienced this endorsement much’) or a low rate a high proportion that (indicating of then it all’), ‘not at clients experienced this If everyone should be eliminated. to an item, responded the same way regardless of the stage of change they were tell us very it would little about at, Mean scores and standard progress. Tests of internal reliability Tests Internal reliability: the items how conducted to assess were A close relationship to each other. related they are suggest that items would between measuring a single underlying construct (e.g. clients are and that psychosocial wellbeing), It may responding to the items consistently. there is more than one underlying be that and emotional wellbeing construct(e.g. a not indicate which would social wellbeing), be useful to would but tool, with the problem to the item did not relate If any know. a problem with this could indicate others, item. that item each quantitative well to explore how and distress’) captured (‘signs of wellbeing had the and psychological wellbeing, Client to change. potential to be sensitive items well and clinician feedback on how The understood also reviewed. were was were: procedures followed  1. Discriminant Discriminant validity: validity by comparing the scores on evaluated was and its various tool, the clinical outcome - psychoso of clients with severe components, by clinicians) with cial problems (as rated We well. those functioning relatively identified as having those predicted that score would psychosocial problems severe problems. with fewer more highly than those ARTICLE SCIENTIFIC 30 TORTURE Volume 26, Number 2, 2016 from doing ordinary things?’ from doingordinary became stopyou ‘Do distressingmemories able tocopewithdistressingmemories?’ readily understood. For example, ‘Are you was changedtomakeitmoreconcreteand assess clients’ abilitytocope, but thewording understand. Two questionswere retainedto concept of ‘coping’ was difficultforsometo also addressedintheGuidanceNotes. changeable,if feelingsarevery sothiswas be possibletogeneraliseover oneweek, even feeling over aoneweek period. Itshouldstill aparticular how muchtheyhadexperienced many timesinaday, andtheycouldnotrate that someclientssaidtheirfeelingschanged Notes forclinicians. Another challengewas this issuewas addressedintheGuidance was difficultyinfocusingonthelast week, so bysomecliniciansandclients experienced was generallyhelpful. Oneofthechallenges from cliniciansandclientsindicated that this illustrate theresponseoptions. Feedback levels ofwater)with varying was usedto with lesssevere andmoresevere problems. and itwas abletodistinguishbetween those scale was good(Cronbach’s alpha=.83), final 20-item ‘signsof wellbeing anddistress’ wellbeing. ofthe consistency The internal designed tomeasuredifferentelementsof are inyour lifeoverall?); theother20were outcome tool’ was misleading, sincethetool accompanying thetool. used todevelop theGuidanceNotes visited, andfeedback fromallcentreswas twosions withteamsat thefirst centres minor changeswere madefollowing discus- from Torture teamsat allfive centres. Some was developed andsharedwithFreedom The final oftheclinicaloutcometool version Phase VIII Clinicians and clients reported that the Clinicians andclientsreported filled A visualaid(picturesofcontainers Some clinicians feltthat thename ‘clinical

1 freedomfromtorture.org available iftheclientfindsithelpful. Once levels ofwaterwith varying inacontaineris much’. A visualaidillustrating eachoption ‘not at all’, ‘a little’, ’quitealot’ or ‘very thought/feeling/behaviour hasaffectedthem Clients areaskedtoindicate whethereach behaviour over thepreviousoneweek. about theclient’s thoughts, feelingsand Signs ofdistressandwellbeing: 20questions tion givenbytheclient(see Table 2). clinician’sfacilitate - recordingoftheinforma mentioned inthepilotdata arelistedto impact. The tenissuesmostcommonly whether theyhadapositive ornegative be recordedinthissection, alongwith month. Any issuesraisedbytheclientcan positively ornegatively, over thelastone impact ontheclient’s wellbeing, either way theissueswhichhave hadthemost the clinicianandclientexploreinanopen Factors affecting wellbeing: A sectioninwhich from Torture storagesystem. information already heldabouttheclientonFreedom from theMOCOwillbelinkedtootherdata is requiredbecauseforeachclientthedata information:Background Minimalinformation design isoutlinedbelow. enhance) thetherapeuticrelationship. Its way (andmay even that doesnotdisrupt clients andclinicians)inavalid andreliable client changeinkeyareas(asdefinedby In general, thetoolwas designedtocapture Description of finaltool i measure ofchangeandoutcome’ (MOCO). outcome. Therefore, itwas renamed ‘a was intendedtomeasureprogress, aswell as A copyoftheMOCOcan beobtainedfromjvandi@ SCIENTIFIC ARTICLE 2 i TORTURE Volume 26, Number 2, 2016 31 Legal status/asylum process Legal status/asylum Housing issues issues Education Social issues issues Family pain) health (excluding Physical pain Physical Financial issues Purposeful of activity activity/lack News from home Forgetting to do things Forgetting very sad Feeling memoriesUnwanted anxious or nervous tense, Feeling Difficulty with sleeping you Realising or being told by other people that cannot remember. done something you have back in the actually were as if you Feeling distressing situation Do distressing memories from doing stop you ordinary things? hopeless? feel Do you soul is damaged? your feel that Do you small things? over temper lose your Do you feel ashamed? Do you Has talking with people felt like too much for you? been able to carry you Have on with ordinary things when problems occur? felt lonely? you Have lost interest in things? you Have life? made plans to end your you Have feelings gone dead? your Have trust much do you other people? How

 

Nightmares 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. The ten areas of life most commonly areas of life The ten 2: Table identified during a positive the pilot study as having emotional wellbeing impact on clients’ or negative How much have the following things affected you over over you things affected the following have much How WEEK? the last ONE 1. 2. 3. 4. 5. 6. 7. 8. types of about some different like to ask you I’d Now much about how to think like you I’d Again, experiences. experienced the last one week have each one over you 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. The 20 ‘signs of distress and wellbeing’ ‘signs of distress and wellbeing’ The 20 3: Table version items included in the final The MOCO was designed to be adminis- The MOCO was A space for the Additional notes and feedback: notes and feedback. clinician to record any recurringAny issues raised in this section can be addressed when the tool and the process of administering it is reviewed. as a collaborative tered during sessions, with client and clinician, between exercise the support of an interpreter when the An open ended question on process: Feedback asking the client to the end of the tool, at the service they feel about explain how they Torture from Freedom from received have They are the previous three months. over has been helpful to asked to explain what The not been so helpful. has and what them, clinician makes brief notes on their response. A single item wellbeing: Assessment of overall ‘things are in your how asking clients to rate using a four point scale (very life overall’, Again very good). good, difficult, difficult, the client has the opportunity to explain their response. they have chosen the response that best response that chosen the they have the clinician invites reflects their feelings, This more about their answer. them to say is impor- aspect to the responses qualitative it gives the client main reasons: tant for two an opportunity about the issues to talk freely them if they choose which are most affecting which enables the process to have to do so, a and it provides some therapeutic value; client has understoodcheck on whether the particularlythe question – this is important being asked in since the questions are it emerges that If cases. in many translation certain questions are frequently misunder- it will be possible to revisit the stood, of the question wording or the translation, 3). (see Table ARTICLE SCIENTIFIC 32 TORTURE Volume 26, Number 2, 2016 languages. about limitedtranslation resourcesinsome source language(English), raisingconcerns documentinthe identical totheoriginal back translations, therewas onethat was phase forinstance, amongstthereturned were withthedocument. notfamiliar Inthis availabletors todothe backtranslations who oftransla- theservices relation toengaging in challenging phase proved particularly items includedinthepilotversion did. This proof-reading andback-translation asthe through thesameprocessoftranslation, wording ofquestions, sotheseitemswent pilot version, therewere somechangestothe Although many itemswere thesameasin Phase IX todiscusstheclient’sopportunity responses. designed togive cliniciansandclientsan therapeutic tool, especiallybecauseitwas language. Inthisway, itcouldbeusedasa clinician andclientdonotsharethesame experienced, stagereached intheasylum as age, gender, nationality, oftorture forms ofDaylight, fromotherparts variables such expected), and to includeinthedata analysis identify whenithasnotbeencompleted as monitor clinicians’ usage ofthetool(e.g. to tional processes. Itis, therefore, possibleto ed intoFreedomfrom Torture’s organisa- into theDaylight- system isthat itisintegrat by clinicians, foranalysis. andtobeexported data fromtheMOCOtobeinputteddirectly author, adaptedtheDaylight systemtoallow IT manager, incollaboration withthefirst aboutclients,to recordinformation andthe from Torture usesasystemcalled ‘Daylight’ develop asystemfordata entry. Freedom across theorganisation, to itwas necessary Before itwas possibletorollouttheMOCO Phase X The advantage of thedata beingentered

subsequent improvement canbecaptured. that thehighlevel ofdistressand any is anoptiontogive aclinician-rated score so earlystages.in thevery Inthesecases, there with theprocessofcompleting theMOCO some clientsaretoodistressed toengage few changes that occurinthefirst weeks, in thetherapy, toavoid missing any positive assessment totakeplaceasearlypossible of weeks beforetherapyends. with thefinaloccasiontakingplaceacouple completed at sixmonthsandtwelve months, months oftherapy. Following this, itwillbe is completedasecondtimeafterthree occur intheearlystagesoftherapy, thetool few sessions. Sincesignificantchangecan assessment, thefirst tobecompletedduring systems. oftheinitialclient Itisusedaspart intoFreedomfrom integrated Torture’s contactwithitintheirlanguage. to theirfirst abouttheuseoftoolprior practitioners meetings. wereby briefed Interpreters team to thetoolandtrainedinitsuseduring tool. CliniciansinLondonwere introduced involved intheprocessofdeveloping the the Londoncentre, sonotallhadbeen A muchlargernumberofclinicianswork in clinicians intheiradministration ofthetool. Guidance noteswere alsoavailable toassist andhow toadministerit.the format with familiar ment ofthetoolsowere very clinicians hadbeeninvolved inthedevelop- In thefourcentresoutsideLondon, all the organisation’s five centresin 2014. April rolledoutacross The MOCOwas formally Phase XI preter was present. used inthesessionandwhetheraninter- employed,therapeutic intervention language sessions sincelastuseofthetool, modalityof application process, numberoftherapeutic Although it is desirable for the first Although itisdesirableforthefirst The useoftheMOCOisnow fully SCIENTIFIC ARTICLE TORTURE Volume 26, Number 2, 2016 33 Data analysis Data It is important of the the analysis that groups to be This process required two A ‘hypothesis generating’ group, made up group, generating’ ‘hypothesis A plus of key people within the organisation, analysis least one member of the data at team. or made up of two group, analysis’ ‘data A together to analyse three people who work and data and quantitative the qualitative present the findings. are the same, but additional items have been items have additional but are the same, same process of development The included. etc.) and clients, (discussion with clinicians of this tool, used for the development was and it is currently in the pilot stage. with adult clients is from the MOCO data which is in a way conducted not only that also in a way but accurate, statistically informationprovides which will inform policy and practice. Torture’s Freedom from take place therefore, analysis will, The data within a dynamic process of hypothesis of analysis and presentation data generation, and further hypothesis reflection, findings, as described in Figure 2 below. generation, formed: 1. 2. of and of the findings questions hypotheses hypotheses Generation Presentation the findings Reflection on A process of adapting the MOCO for use A process of adapting the MOCO for use In order not to disruptIn order not the therapeutic with young people is currently underway. people is currentlywith young underway. structure and some of the items The overall Next steps from by Freedom The MOCO developed For is still in the early stages of use. Torture of coding a way have do not yet we example, this will be developed data; the qualitative as it analysis of data through thematic some this, Despite becomes available. with similar working UK-based organisations expressed interest in using have populations and are trialling it with their clients. the tool, encourages this kind Torture Freedom from and hopes to working, of collaborative expand it once the MOCO has been in use and enough data for a longer period of time, its has been collected to enable us to explore psychometric properties. ARTICLE SCIENTIFIC The data analysis process The data Figure 2: process, it is possible for the MOCO to be it is possible for the MOCO process, time during a three-week any completed at period (the 3-month mark, each point at according to the 12-month etc.), 6-month, judgement of the clinician. 34 TORTURE Volume 26, Number 2, 2016 this iscomplete. ofanalysis’revise theplanned’cycle once process. Itwillbepossibletoreviewand at usingthis thetimeofwriting, begin dataset increases. data asdifferentissuesemerge, andasthe from Torture toasknewquestionsofthe This processcontinues, enablingFreedom and questionstobeaddressed(stage1). setofhypothesesdevelopment ofafurther findings (stage4), andthisleadstothe The twotogetherreflectonthe groups delivered tothehypotheses-generating group. and alsoasapowerpoint presentation tobe format, they presentthefindingsinareport conducts theanalyses(stage2). At stage3, and questions, thedata analysisteam communication. and ofadvocacy purposes for and/or practice, and policy about decisions to inform order in therapy, with engage how they and group client Torture from Freedom ofthe understanding deepen will which and time, at the available ofdata amount and type the with answered be can which those be should questions These data. MOCO of the asked be can which ofquestions aset identifying on focuses questions, and ofhypotheses tion genera the process, the in stage first The •  •  using thetoolbeneficial: number ofways inwhichtheyhadfound identifieda who sharedtheirexperiences MOCO over year. thefirst Theclinicians ofusingthe to reviewtheirexperiences ofclinicians, groups clientsandinterpreters Meetings were heldinJune2015with Review client morefully; usingthetoolhas the It canhelpclinicians tounderstand that hasbeenmade. It isahelpfulway ofrecognisingprogress The first phaseoftheanalysisisaboutto The first Following onthehypotheses agreement

- clients often arrive at Freedomfrom clients oftenarrive Torture. reflect theextremelydistressed state in which at anearlystageinorderto information tocollect recognise that itisimportant the priority. At thesame time, clinicians ethically thereisnodoubtthat thismust be ship andenablingtheclientto feelsafe; cian’s relation - focusisonbuilding atrusting few In thefirst weeks andmonths, aclini- aspersecutory.process canbeexperienced sufficiently toanswer themorbecausethe either becausetheclientisunabletofocus fewsessions,ask thequestionsinfirst at that stage. Sometimesitisnotpossibleto because theclientisoftenhighlydistressed with aclientcanbedifficult, especially clinicians andinterpreters. forclients,tool whicharechallenging for them. areas,improved positive incertain thisisvery experiences. When theyseethat theyhave the questionswere oftheir gooddescriptions their ornon-progress’,‘progress andfeltthat found thetoolhelpfulasameansofchecking inthereview The clientswhoparticipated • •  •  feels manageable. withwhichthetoolisused The frequency very fragmented. very ‘containing’ forclientswhofeel experience which arerelevant towellbeing. Itcanbea even ifthetooldoesnotcover allissues ‘overview’ oftheirwellbeing inonesession, Some clientsfoundithelpfultohave an input intothedevelopment ofthetool. clinician explainsthat clientshave had especiallyifthe It canbenormalising, revisited inlater sessionsifappropriate. and clinician. These issuescanthenbe issues that were usefulforboththeclient sometimes enabledtheclienttodisclose One of the clients who participated inthe One oftheclients whoparticipated timetheMOCOtoolisused The first Inevitably, thereareaspectsofusingthe SCIENTIFIC ARTICLE TORTURE Volume 26, Number 2, 2016 35 ). The characteris- ). 2, 3, 4 It has not been possible to use the been possible to use It has not Measurement tools and approaches should tortureconsider the context within which Torture The Freedom from survivors live. ‘factors affecting tool includes a section on in a brief which records format wellbeing’ the greatest impact those issues which have - wellbe on clients’ and negative) (positive assess it will be possible to time, Over ing. in which these issues influence the ways wellbeing. of outcomes should be consid- A broad range translations of the tool in a standardised way, in a standardised way, of the tool translations There are not only as initially intended. the Freedom languages spoken within many also many but population, Torture from The interpreters they said that dialects. of communi- way cannot use a standardised to they have to clients, the questions cating the dialect spoken by adapt depending on of education. their level and even the client, since if the questions Clearly this is not ideal, it is more way are not asked in a standardised any changes difficult to be confident about if the However, observe. and differences we under- standardised questions are not well to be a also prove this would stood by clients, forward, The best way source of unreliability. is for all the interpreters a to have it seems, good understanding of the of the meaning a copy of the trans- and to have questions, the to communicate but tool to refer to, lated most meaning of each question in the way appropriate to each client. Discussion by Freedom The outcome tool developed and the process by which it Torture, from has addressed some of the will be used, shortcomings of tools used in other outcome research (see reviews tics of good research outlined earlier in this tics of good research outlined earlier in this paper are useful in reviewing Freedom From measure of change and outcome. Torture’s •  •  Many of us find it difficult to be clear Many - Some questions are difficult to communi about how we have felt over the last one over felt have we about how some clients have and not surprisingly, week, their conceptual difficulties with rating considerable skill is required Again, feelings. on the part of the clinician and interpreter to more to the This relates help them with this. the first time the tool is used with someone; - second and third times are more straightfor ward. the firstcate time the tool is completed, ‘Do The question especially in translation. is soul is damaged?’ your feel that you extremely meaningful to some clients, experienced the especially those who have where it does not but most extreme torture, experience it can be touch on someone’s The clients who difficult to understand. participated an it was in the review felt that it in some ways that and important question, recovery. test of someone’s the ultimate was review said that the first that review said his clinician time it tool with him, through the outcome went brought back memories of his interrogation very which he found by security forces, This is where the skills of the difficult. he him, “I know therapist are essential: He knows weaknesses. me and my knows support to how me me without leaving He does his best to make me mentally weak. very clear, He’s feel I’m not under torture. time, own it in my Do affection. he shows not if you’re it all now to do have don’t to not forced’ ‘you’re comfortable … He says someone feel he’s so you that, answer One (Male client). issue” to your sensitive clinician described she and the inter- how of asking the way preter had to find a without style, questions in a conversational either of them holding papers or making because he found notes in front of the client, - to do it relation have “We this distressing: (Clinician). and flexible” be creative ally, ARTICLE SCIENTIFIC 36 TORTURE Volume 26, Number 2, 2016 •  •  •  •  intervals in between. between. in intervals at regular and therapy, end they when to through right Torture from Freedom with contact first their from MOCO the using assessed be will wellbeing studies: previous in case the been has than period alonger over assessed be should Outcomes piloting. before beingincludedinthedrafttoolfor with Freedomfrom Torture interpreters ment tool:Potential itemswere discussed ment ofquestionstobeincludedinameasure- Translators shouldbeinvolved inthedevelop- would beused. tool itself, andtheprocessbywhichit involved inthedevelopment ofboththe measurement tool:Clinicianswere fully development ofquestionstobeincludedina involved intheidentification ofoutcomesand Clinicians andotherpractitioners shouldbe relevance forclients. greatestthe issuesidentifiedashaving the clients. Those chosenforinclusionwere process ofdiscussionwithcliniciansand MOCO were identified throughanongoing themselves. The outcomesincludedinthe meaning andrelevance survivors for thetorture ered, andthosewhich have thegreatest grounds. back and experiences different with clients between comparisons to make and increases, ofdata body the as questions of important range awide explore to possible be will it so information, biographic and data assessment alongside analysed be can data outcome The time. over collected be will ofdata amounts large centres, Torture from Freedom the in therapy individual in engaged adults of population entire the with indefinitely comparisons: make to enough large be should size sample theWhere population is heterogeneous the

For each client, their psychosocial psychosocial their client, For each Since the MOCO will be used used be will MOCO the Since - Rojjanasrirat, stages, asstrongly suggestedbySousaand forallthree qualifiedtranslators recruit ed byathirdtranslator. were madeto Efforts second translator beforebeingback-translat- translationa tobeproof-readby the first one translator rather thantwo. This enabled included ‘forward translation’ (Step1 the targetlanguages, thetranslation process translation. literal or oflinguistic instead equivalence cultural and conceptual on also was translations back commissioning when emphasis translation, initial to the Similarly tool. ofthe author the by written glossary, a including guidelines, with provided relevant way. Additionally, they were most the in it to translate attempt and term original the of definition the consider to instructed were Translators meaning. original the reflect not would translation) aliteral (i.e. translation word-for-word a since phrase, or ofaword equivalence conceptual the on offocusing importance the emphasising translators the with discussions held Torture from Freedom translations, the commissioning When es. languag target into document piloting tool outcome and change of measure first the translating when care great took Torture from Freedom instrument, validated as suggestedby SousaandRojjanasrirat, created challengesinachievingthis. insomelanguages qualified translators Williams, populations, asnotedbyPatel, Kellezi& intended formultilingualandmulticultural development ofclinical outcometools inthe The translation processiscrucial manner. translation isconductedinarigorous guidelines available that toassistin ensuring Due to the limited source of translators in in Due tothelimitedsourceoftranslators across-culturally to achieve order In The adoptionof blindbacktranslations, 9, 10 4 and there are some very useful andtherearesomevery 9 although the limited source of althoughthelimitedsourceof SCIENTIFIC ARTICLE 9 ) by ) by 9

- TORTURE Volume 26, Number 2, 2016 37 - - - A 11 The question that many clinicians In order be to sure thatit is a client’s lar client, and match this client to progress. The issue is complicated by the fact that,in many cases, clients receive a variety of services from Freedom from Torture, from a variety personnel of (therapist, physi otherapist, caseworker, doctor). With a large enough sample, it would be possible to evaluate which type of clients make the best progress with which approaches or combi nation of approaches, taking into account the characteristics of the client and his/her circumstances.it will However, be some time before Freedom from Torture has enough data make to this a possibility. In the meantime, clients will be asked what has helped them most over the last three months, and they will have an opportunity identifyto any aspects of the Freedom from service. Torture disadvantage, however, is that the use of the is that however, disadvantage, populations different tools for different make comparisonsmakes it difficult to across which This is a limitation different groups. tool. applies to the MOCO wanted an answer is to ‘what is it about the way work we thathelps our clients? Can we help clients more more (or quickly)?’ To answer this question, it would be necessary gatherto information about the approach an individual therapist takes with a particu engagement with Freedom from Torture, rather than something else, that has contributed any to observed change we would need comparison a group of people with similar characteristics Freedom to from Torture clients, but who are not accessing Freedom from Torture therapy. Whilst this is not possible, Jaranson and programme; it can be developed in collabo- developed it can be programme; and other population with the target ration of and can reflect issues stakeholders; concern the target population. to The MOCO is designed only to assess to There are a number of advantages Limitations and challenges Limitations The MOCO is a tool designed for a specific and it is importantpurpose, to recognise In order both its strengths and its limitations. the focus of the MOCO becoming to avoid the by where the therapy is driven therapy, it is essential for both manag- outcome tool, ers communi- and clinicians to recognise and it is and that of the tool, the limitations cate It is about a client. ‘the truth’ not a tool, useful for certain does not tell but purposes, the whole story clients change about how through their engagement with Freedom of the Some of the limitations Torture. from with along MOCO are outlined below, can be ad- these suggestions as to how where possible. dressed, identified as key by the aspects of wellbeing is not designed to It clinicians and clients. - wellbe a full assessment of clients’ provide to advantages therefore, There are, ing. combining the use of the MOCO with other assessment tools. new instrumentsdeveloping which are includ- appropriate to a specific population, ing the fact the instrument that can address the questions of particular interest to a was extremely helpful in identifying lack of helpful in identifying extremely was phrases clarity in words, and discrepancies - and in highlighting uncer and sentences, firsttainty regarding the translations. the final pilot document when Additionally, asked to they were used with clients, was understand, they did not words identify any they thought that or expressions and words The unacceptable or offensive. were corrections as a result of this process made of clients misinter- minimised the potential and greatly reduced preting questions, about terms feedback negative used clients’ in the tool. ARTICLE SCIENTIFIC 38 TORTURE Volume 26, Number 2, 2016 achievement for clients. some achievement an is alive staying simply out, pointed clinicians some As outcome. positive a reflects this to sessions, coming keeps still yet intention, to suicidal relating item the on time over highly scores consistently aclient if For example, oftherapy. impact positive of the indicators subtle more the to analysis during sensitive to be necessary be also However, will it tool. outcome clinical the in factors external these capture to able be we will Totherapy. extent, some with to engage able are they whether and wellbeing psychosocial client’s a influence which factors external many are there with, work Torture from Freedom tion popula the with particularly but therapy, with engaging groups all With us?’ tell that does what don’t improve, clients ’if was, groups. clients’ via and feedback, written mous anony including Torture, from Freedom to feedback to give of ways a variety have should Clients others. with combined to be perspective one provides it ’truth’; only the as seen be not should it but tool, outcome and ofchange measure ofthe part important an is Torture from Freedom from received have they service the on clients from feedback The information. useful less potentially yield would tool MOCO of the aspect this so Torture, from Freedom from received have they service the about helpful found not have they what them telling comfortable to be unlikely are clients their variables). confounding potential other or groups, ofthese tics characteris the in differences any account into (taking compared are psychotherapies of types different in participating groups where situations, these in used be can Quiroga A concern expressed by some clinicians clinicians some by expressed A concern that felt all) not (but clinicians Some

2 suggest that a comparison design design acomparison that suggest - - - Freedom from Torture, andinthe processby fections intheMOCO developed by data isavailable. we betteronce willbeabletounderstand as accountsofitimproving. This isanissue oncetheygotrefugeestatus ing deteriorating many anecdotalaccountsofclients’ wellbe- psychosocial wellbeing. Cliniciansgave as ing ofhow theasylumprocessaffects it willbepossibletodevelop- ourunderstand refugee status. accumulates,As information ’well’ theymay notbeseenasrequiring successful, duetothefearthat iftheyare provement untilaftertheirasylumclaimis might bemotivated nottoshow any im- distress’ sectionoftheMOCO. included inthe’signs ofwellbeing and this, noitemrelating tophysical painwas distinguish between thetwo inatoolsuchas physical illness. Sinceitwillbeimpossibleto distress,logical theymay alsobedueto somatic signscanbeanindicator ofpsycho- headaches, bodilyachesandpainsother one.distress was achallenging Whilst tation services”(p145). andeffectiveculturally-appropriate rehabili- sential todeveloping contextrelevant, organisations/centres in seeingresearchases- withinandacross be sharedownership suspicions canbeminimised, andtherecan evaluation, sothat traditionaldivisionsand collection andresearch, includingoutcome shift inorganizational culturetoenabledata somewhere may alsorequire that therebea resources andskills…However, starting settings,country andwiththeavailable and what we areabletodoinourunique this may meanworking withwhat we have, “We somewhere, shouldallaimtostart and Conclusions Although thereareundoubtedly imper- Finally, cliniciansnotedthat someclients The issueofphysical symptoms of SCIENTIFIC ARTICLE 5 TORTURE Volume 26, Number 2, 2016 39 - Dr Nimisha Patel and her team, formerly of Freedom from Torture (The Medical Foundation) for the comprehensive review of literature relating outcome to measure ment in this field which laid the foundations for this work.

i Measuring outcomes 2 The content of the MOCO will continue The content of the MOCO will continue Acknowledgements Thanks are due Clarisa to Carvalho (Interpreting her Service for Manager) work managing the translation of the measure of change and outcome, and her contribution this to would also paper. We like acknowledge to the efforts of all Freedom from Torture Clinical Managers, clinicians, clients and interpreters in the development of the MOCO, and in its ongoing use. Particular thanks are due to which it is being implemented, we have have we being implemented, which it is the met and have ‘started somewhere’, criteria referred to earlier in this paper set by clinicians for torturea task force of senior centres. rehabilitation ARTICLE SCIENTIFIC is now an integralis now part of the care offered by clinicians to adult Torture Freedom from clients engagingin individual therapy. Assessment is integrated into the daily Torture from routine of the Freedom it is not conducted as a separate Centres; by It is perceived research programme. management trustees, Torture Freedom from which and clinicians as a long-term process, time to enable informationwill provide over to identify those aspects of the organisation impact their services a positive which have on the various with. client groups they work there is Processes are in place to ensure that regular questioning of the outcome data, consisting of identifying key questions, and reportinganalysing the data the findings, the and using this information to improve quality of care offered by Freedom from Torture. and the processes used to to be reviewed, and will make collect and record the data, data that Now services. use of it to improve is being collected and the first phase of has just the work analysis is underway, begun. 40 TORTURE Volume 26, Number 2, 2016 11. 10. 9. 8. 7. 6. 5. 4. 3. 2. 1. References

Erlbaum; 2004. P. 337-374. tal HealthofRefugees. NewJersey: Lawrence munities. InMillerK, RascoLeditors. The Men- inRefugeeCom - Mental HealthInterventions Hubbard J, MillerKE. Evaluating Ecological stance_abuse/research_tools/translation/en/ Mar 26] Available from: http://www.who.int/sub- [cited [Internet] and adaptionofinstruments World HealthOrganisation, Processoftranslation 2011 Apr;17(2):268-74. guideline.and user-friendly JEval ClinPract. use incross-culturalhealthcareresearch: aclear orscalesfor tion andvalidation ofinstruments W.Rojjanasrirat Sousa VD, adapta- Translation, Support inEmergencies.Support Geneva: IASC; 2007. Guidelines onMentalHealthandPsychosocial StandingCommittee(IASC),Inter-Agency IASC Group; 2003. Framework. Edinburgh: Psychosocial Working vention incomplexemergencies: A Conceptual Psychosocial Working Group. Psychosocialinter- qualitative study. Torture. 2013;23(1):1-14. Iraq:genocide inKurdistan, Northern A brief and oftorture chosocial problemsofsurvivors LK,Murray BassJ. The mentalhealthandpsy- Bolton P, MichalopoulosL, Ahmed AMA, ture. 2011;21(2):141-5. Reflections ontreatment outcomestudies. Tor- E,Montgomery Patel N. Torture rehabilitation: 10.1002/14651858.CD009317.pub2. views 2014, Issue11. Art. No.: CD009317. DOI: survivors. CochraneDatabase ofSystematic Re- healthandwell-beingpsychological oftorture chological, for socialandwelfare interventions Patel N, KelleziB, Williams Cde A. Psy- Psychiatry. 2012Jul;49(3-4):539-67. andtrauma:torture A 30-year review. Transcult of foradultsurvivors interventions chological McFarlane C.A, KaplanI. Evidence-basedpsy- 140. and recommendations. Torture. 2011;21(2):98- rehabilitation programmes: History of torture Jaranson JM, QuirogaJ. Evaluating theservices don: ICHHR; 2014. providers.survivors: Handbookforservice Lon- fortorture evaluation ofrehabilitation services Patel N, Williams Cde A. and Monitoring

SCIENTIFIC ARTICLE