Evaluation of the mental health profile of caregivers of children with cerebral palsy in a low-resourced setting: development, translation and validation of patient-reported outcome measures
Background & aims: Several systematic reviews have demonstrated that caring for a child with functional limitations leads to poor caregiver mental health outcomes. For instance, depression, anxiety and caregiver burden are endemic in informal (unpaid) caregivers of children with cerebral palsy (CP), a common paediatric disability. However, caregivers who receive an adequate amount of social support are likely to better adjust to the caregiving role. Given the increasing move towards family-centred care and evidence-based care, there is a need to evaluate caregivers’ mental health and to develop and implement context-specific caregiver well-being programs. The valid measurement of the impact of these programs is dependent on the availability of psychometrically robust patient-reported outcomes (PROMs). Unfortunately, most available PROMs have been developed in high-income settings, and their applicability in low-resource settings such as Zimbabwe may be questionable. The present study thus aimed to develop a context-specific caregiver strain outcome, to adapt, translate, and validate a social support outcome measure and finally to profile the mental health of caregivers of children with CP residing in Zimbabwe. Methods: The Zimbabwean Caregiver Challenges Scale (ZCCS) was developed through the amalgamation of findings from a systematic review, caregivers’ interviews and two rounds of content validation by a panel of experts. A systematic review was then undertaken to appraise the psychometric properties of the Multidimensional Scale of Perceived Social Support (MSPSS). The MSPSS was then adapted, translated into Shona, a Zimbabwean native language, and validated. In the final phase, further validation of the ZCCS and the MSPSS was done, and structural equation modelling was used to profile the mental health profile of caregivers. Results: The ZCCS yielded four factors which were ; physical & economic burden, concerns for the child, family relations and community participation. The ZCCS was found to be a reliable tool as it yielded excellent Internal Consistency (IC) ratings at both sub-scale [α range: 0.765- 0.841] and scale level [α=0.925]. The Interclass Correlation (ICC) (95% CI) for ZCCS scores at baseline and after four weeks was 0.880 (0.793: 0.930), demonstrating the stability of the ZCCS. We replicated the original 3-factor structure of the MSPSS through factor analysis. Further, dichotomisation of scoring options and the deletion of one item resulted in a parsimonious solution as the 11-items solution met Rasch modelling requirements. The MSPSS-Shona version is reliable; it yielded excellent IC ratings at both sub-scale [α range: 0.833-0.892] and scale levels[α=0.8685]. The ICC rating (95% CI) for MSPSS scores at baseline and after four weeks was 0.980 (0.959: 0.990) demonstrating the stability of the MSPSS, and the person separation index (PSI) was 0.731. Both the ZCCS and MSPSS displayed construct validity; higher caregiver burden was associated with greater psychiatric morbidity and lower health related quality of life. Caregivers who received a higher amount of social support had the best mental health outcomes. Further, structural equation modelling provided evidence of the multidimensionality of the caregiver burden. Contextual factors, such as increased child age, increased caregiving duration, lower child functional capacity/more severe CP, and lower socioeconomic status were associated with poor mental health functioning. Conclusion: The thesis contributes to the body of knowledge by documenting the validation of caregivers' mental health outcomes and determination of mental health functioning of caregivers residing in low-resource settings. The ZCSS and MSPSS were both found to be valid and reliable measures within the context of Shona speaking rural and urban Zimbabweans. It is therefore suggested that both measures can be used with confidence in these contexts. Efforts should be made to integrate patient-reported outcome measures (PROMs) in routine clinical care and research and in developing and implementation of tailor-made caregiver wellness programs, within the validation contexts.
caregiver burden, social support, reliability, validity, Zimbabwe, cerebral palsy, mental health
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Department of Health and Rehabilitation Sciences