The experience of caregiving for children with rare musculoskeletal conditions: A qualitative study in Arthrogryposis Multiplex Congenita

AbstractBackground Arthrogryposis Multiplex Congenita (AMC) is a rare musculoskeletal condition with a global health impact. It imposes significant financial burdens on caregivers, affecting them directly, indirectly, and psychologically. Caring for a child with AMC is complex due to their mobility limitations and frequent hospitalizations. Other challenges experienced by caregivers include, but are not limited to, financial strain, job changes, abandonment, and changes in interpersonal relationships. Hence, our study was aimed at exploring the experience of caregivers of children with AMC. Methods This study is part of a global mixed method study. Over 100 caregivers of children aged 0–21 years with AMC participated in the quantitative aspect of this mixed-method study which involved responding to a validated cost of care survey on Qualtrics. Of the 100 participants, 13 caregivers consented to be part of the qualitative aspect of this study which involved a 60-minute semi-structured interview. Individual interviews were semi-structured, conducted remotely with open-ended questions exploring a deeper understanding of the different direct and indirect costs and their impact on the caregivers' lives and caregiving experience. Interviews were subsequently transcribed; a coding scheme was developed drawing from both existing literature and the content of the interviews. The qualitative data were then inductively and deductively analyzed using the coding scheme on the qualitative data analysis software (NVivo). Results and Conclusion Five themes describing the experience of caregivers of children with AMC emerged from the analysis of the qualitative data: 1. Impact of caregiving experience; 2. Cost of childcare; 3. Support system for care; 4. Managing and navigating care; 5. Supporting child’s growth and development. Alongside these themes, recommendations shared by the caregivers included the need for support groups and providing support for youth to prepare them for adolescence. These findings can inform resource allocation, policymaking, and support services for children with rare conditions.