Lived Experiences and Challenges Among Caregivers of Children with Dystrophinopathies in Zambia: A Qualitative Study.
Namita Patel1, Musambo Kapapa2, Ian Ackers3, Heather Adams1, David Bearden1, Rita Horvath4, Katherine Schon4, Nfwama Kawatu5, Somwe Wa Somwe5, Michelle Kvalsund1
1University of Rochester Medical Center, 2University Teaching Hospital Zambian Institute for Neurological Care, Research and Education (ZINCARE), 3University of Minnesota, Gillette Children's Specialty Hospital, 4University of Cambridge, 5University Teaching Hospital
Objective:
To explore the lived experiences of parents/caregivers of children living with dystrophinopathies in Zambia.
Background:
Dystrophinopathies are severe, progressive muscle diseases involving multiple body systems, often requiring intensive healthcare utilization, and imposing a high caregiver burden. Despite these challenges, no previous studies have explored perspectives and experiences of caregivers of children with dystrophinopathies in sub-Saharan Africa.
Design/Methods:
A descriptive phenomenological study was conducted involving caregivers of Zambian children with dystrophinopathies. Four focus group discussions, each with 4–6 caregivers, were held. One in-depth interview was conducted separately for one caregiver unable to attend a group session due to caregiver time constraints. Discussions were audio-recorded, transcribed verbatim, and translated into English by experienced research staff fluent in local languages. Transcripts were coded independently by two investigators and analyzed using a deductive thematic approach.
Results:
Caregivers experienced challenges across three socioecological domains: 1) Interpersonal: Caregivers reported psychological strain owing to child loss of autonomy, peer bullying, reduced school attendance, and social isolation. Caregivers also experienced social isolation and reported a lack of physical, emotional, and financial support. Many faced economic hardship due to lost income and caregiving expenses; 2) Organizational: Key barriers included poor school accommodations, limited accessibility (e.g., wheelchairs, transport), insufficient knowledge about dystrophinopathies in smaller healthcare facilities, and lack of rehabilitation resources. Long, expensive travel to reach care was a recurring burden; 3) Community: Stigma, blame, and lack of community awareness about the disorder was noted alongside inadequate emotional and social support. Caregivers noted a reliance on traditional medicine often delayed diagnosis and care. A desire for connection with other afflicted families was also a recurring theme.
Conclusions:
Caregivers of children with dystrophinopathies in Zambia experience a complex interplay of challenges. Strengthening education accessibility, healthcare access, policy support, and community advocacy can improve quality of life and support networks.
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