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Dambi J.1,2, Mlambo T.1, Jelsma J.2
1University of Zimbabwe, Rehabilitation, Harare, Zimbabwe, 2University of Cape Town, School of Health and Rehabilitation Sciences, Cape Town, South Africa
Background: Cerebral palsy (CP) is the most common paediatric physical disability. There is concordance that caring for a child with CP often leads to caregiver burden, deterioration of physical functioning and overall lower health-related quality of life (HRQoL). This is because most of these children present with multiple impairments, activity limitations and participation restrictions which may warrant lifetime assistance from caregivers. It is therefore essential to evaluate the well-being of caregivers of children with CP. For this to be attainable, there is a great need for patient-reported outcomes (PROs) which are reliable, valid and context-specific. However, a systematic review revealed the lack of PROs developed for use in caregivers of children with CP. Furthermore, most of the available generic PROs were developed in high-income countries thus their applicability in low-resources settings such as Zimbabwe may be questionable. Caregiver burden is a subjective, multifactorial construct which is hugely influenced by culture, socio-economic environment among other factors.
Purpose: To develop a tool for measuring caregiver burden in the Zimbabwean setting.
Methods: A systematic review was performed to identify and appraise the psychometric properties of previously developed caregiver burden outcome measures. Candidate items were extracted from the most psychometrically sound tools. Thereafter, we interviewed caregivers (n=10) to elicit their experiences of caregiving. A first version of the Zimbabwean Caregiver Burden Scale (ZCBS) was developed and this was subjected to panel of experts face validity evaluation. 25 items were deemed redundant and the second draft with 73 items was subjected to panel of experts (n=10) for content validation. Thereafter, the third draft was administered to caregivers (n=10) for cognitive debriefing. The tool was further refined to 45 items and was administered to caregivers (n=1000) for field testing. Exploratory factor analysis using the principal component analysis (PCA) data reduction technique was performed for the initial psychometric evaluation. Data were analysed using SPSS (version 23).
Results: Most tools were developed in high-income countries and very few had sound psychometrics thus their applicability in low resources settings was questionable. Economic, psychological and physical burden evolved as the key themes from the caregivers interviews. The panel of experts endorsed the face and content validity with the ZCBS yielding I-CVI and S-CVI of 0.85 and 0.85 respectively. Data from 300 caregivers thus far has shown the 30-item tool to display a five-factor structure, high internal consistency (Cronbach α=0.90) and excellent test-retest reliability (Pearsons r= 0.86).
Conclusion(s): Preliminary data has shown the ZCBS to be a valid and reliable caregiver burden outcome measure. Further psychometric evaluation is warranted to evaluate the performance of the tool in other subgroups of caregivers and in other settings. There is also need to develop a shorter version of the tool for routine clinical use.
Implications: Given the importance of patient-centred approach and evidence-based practise, there is a great need to routinely evaluate the well-being of caregivers of children with long-term conditions/disabilities. Such information is vital in the development of context-specific interventions to mitigate the effects of caregiver burden. This is only attainable through use psychometrically sound PROs.
Funding acknowledgements: The University of Cape Town financed the principal researchers' tuition and the University of Zimbabwe partially funded data collection.
Topic: Research methodology & knowledge translation
Ethics approval: University of Cape Town - HREC REF : 122/2016
Medical Research Council of Zimbabwe -MRCZ/A/2072
All authors, affiliations and abstracts have been published as submitted.
