Functioning In People With Severe Mental Disorders In Rural Ethiopia Development Adaptation And Validation Of Measures

Background: Restoring impaired functioning is one of the most difficult challenges in treatingrnpeople with severe mental disorder (SMD). Significant improvement in interpersonal relations,rnrole performance and community living skills usually lag behind symptomatic improvement, butrnare valued more by people with SMD. As a result of this, the assessment of functioning isrngaining emphasis as an outcome in research and clinical practice. Though numerous instrumentsrnto assess functioning are in existence, most have been developed in high resource countries andrnmay not be generalizable to other cultures as the definition of functional recovery differs withrnsociocultural context. Existing functioning measures are limited by questions that are culturernbound; they do not take in to account role differences between men and women in rural Africanrnsocieties and fail to present specific tasks that are important to local people. Therefore, there is arnpressing need to develop and/or adapt and validate measures of functioning that address thernlimitations of existing instruments and are appropriate for the socio-cultural context in Ethiopia.rnObjectives: The primary aim of this study wasto develop and validate a measure of functionalrnimpairment for people with SMD, which is socio-culturally appropriate for a rural, African lowincomerncountry setting.A secondary aim was to evaluate the psychometric properties of therncross-cultural World Health Organization Disability Assessment Schedule (WHODAS- 2.0) andrnto compare performance with the newly developed, contextually-informed measure.rnMethods: A qualitative study (in-depth interviews and focus group discussions) was carried outrnto gain contextual understanding of day-to-day functioning in a rural Ethiopian setting and thernfunctional impairments associated with SMD. Free listing and pile sorting exercises werernconducted to identify key tasks that an adult person in the rural Ethiopian context is expected tornaccomplish, as well as to operationalize new scale items to measure functional impairment.rnExpert evaluation and cognitive interviewing were carried out for preliminary validation andrninitial reduction of items of the new scale, the Butajira Functioning Scale (the BFS). Pilot testingrnof the BFS was conducted with 200 people with SMD and their caregivers (n=200) in order tornidentify items that performed poorly and inform further item reduction. The psychometricrnproperties (internal consistency, construct validity, convergent validity and sensitivity to change)rnof the finalized BFS were evaluated in an independent sample of people with SMD (n=150) andrntheir caregivers (n=150) recruited in episode and a sub-sample of n=84 followed up for sixrnviiirnweeks. Psychometric properties (internal consistency, convergent validity, construct validity andrnresponsiveness to change) of the Amharic version of the World Health Organization DisabilityrnAssessment Scale (WHODAS-2.0) was carried out in the same sample to enable comparisonrnwith the BFS.rnResults: The qualitative study participants emphasized that functional impairment in people withrnSMD arose not only because of the symptoms associated with the illness, but also due to poverty,rnsocial exclusion and lack of social support. In this rural Ethiopian setting, the ability to workrnproductively, engage in family life, maintain self-care and fulfill social obligations were the mostrnhighly valued domains of functioning. Gender differences were most apparent in the domains ofrnwork and family life. Impaired functioning was reported to have a critical immediate impact onrnsurvival as well as more far-reaching impacts on the lifetime opportunities of people with SMD,rntheir caregivers and the younger generation within the family.rnThe first draft of the BFS had 78 items in the women’s scale and 84 items in the men’s scale.rnItem reduction was carried out using expert evaluation, cognitive interviewing and pilot testing.rnThe criteria considered for item reduction included understandability, relevance to the ruralrnEthiopian setting, whether or not the task is seasonal, insufficiently frequent, and specific to thernlocality, and psychometric properties of each item (e.g: item-item correlation, item-totalrncorrelation, test-retest reliability, factor loadings). The expert evaluation resulted in the BFS v2rnwith 69 items in the women’s scale and 59 items in the men’s scale. The cognitive interviewingrnbrought the BFS v3, with 67 items in the women’s scale and 50 items in the men’s scale. Thernpilot study led to the finalized BFS comprising33 items, common to both men and women, andrnan additional eight items in the women’s scale, with four domains: self-care, work, family andrncommunity participation.rnThe BFS had excellent internal consistency (Cronbach’s α=0.99), acceptable convergent validityrn(r= 0.88 with WHODAS-2.0 and r= 0.32 with the Brief Psychiatric Rating Scale [BPRS-E]) andrnwas sensitive to change following treatment (effect size =0.50). The caregiver version of the BFSrnhad similar psychometric properties but higher mean values for each item and betterrnresponsiveness to change. Exploratory factor analysis of the BFS provided evidence of constructrnvalidity, with four underlying dimensions: self-care, work (shared items), work (women onlyrnixrnitems) and social functioning. Internal consistency of the overall WHODAS-2.0 and each domainrnwas either very good or excellent. Convergent validity was good (r= 0.88 with the BFS and r=rn0.52 with the BPRS-E). The WHODAS-2.0 was found to be sensitive to treatment changesrn(effect size= 0.50). As hypothesized, the six domains highly loaded onto the general disabilityrnfactor and each item loaded significantly onto their respective domains. The factor loadings ofrneach item in the one factor model of the 12 item WHODAS were also high. However, therngoodness of fit indices for both the 12- and 36-item WHODAS were close to, but not within, thernacceptable ranges.rnConclusions: The findings from the qualitative study indicate that, alongside medical treatment,rnthere is a need to tackle social exclusion and poverty in order to improve functioning in peoplernwith SMD in this rural Ethiopian setting. An ecologically valid measure of functioning has beenrndeveloped for people with SMD in a rural Ethiopian setting. The new scale (the BFS) is alsornlikely to be applicable to similar rural African contexts. The BFS has acceptable psychometricrnproperties, and is easy to administer, sensitive to changes following treatment and has content,rnconstruct and convergent validity. The BFS includes domains from existing measures, but hasrngreater emphasis on social and occupational domains, which reflects priorities in the setting. Thernstudy showed that the WHODAS 2.0 has acceptable psychometric properties and can be used asrna cross-cultural measure; however, the use of the scale in rural African settings requires carefulrnand rigorous adaptation.rnRecommendations: On the basis of the findings and the conclusions made, the studyrnrecommends the following.rn Mental health care providers need to involve family caregivers while providing treatmentrnfor people with SMD. This is because functional impairment in people with SMD hasrngreater burden in family members and in turn, family members contribute to thernfunctional impairment of people with SMD.rn There is a need for further investigation to identify the effective type of psycho-socialrnintervention to enhance the functioning of people with SMD in addition to treating illnessrnsymptoms.rnxrn Clinicians are suggested to use the BFS in their routine clinical practice as it may havernutility in clinical settings to ensure comprehensive assessment of functional status andrntrack recovery.rn Future research should explore whether or not a shorter version of the BFS is feasible;rnthere is also need to test the feasibility and psychometric properties of the BFS in otherrnrural African settings.rn In mental health research, there is likely to be value in using both the BFS and thernadapted version of the WHODAS-2.0 in order to both measure locally relevantrnfunctioning indicators to be able to compare across settings.

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