Abstract Details

Title Lived Experiences and Challenges Among Caregivers of Children with Dystrophinopathies in Zambia: A Qualitative Study.

Topic Child Neurology and Developmental Neurology

Presentation(s) P3 - Poster Session 3 (5:00 PM-6:00 PM)

Poster/Presentation
Number 8-003

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.

Authors/Disclosures
Namita Patel, MD (University of Rochester Medical Center) PRESENTER	Dr. Patel has nothing to disclose.
Musambo M. Kapapa Jalloh, PT	Mrs. Kapapa Jalloh has nothing to disclose.
Ian Ackers, DO, PhD	Dr. Ackers has nothing to disclose.
Heather Adams	The institution of Heather Adams has received research support from Current: NIH; Past: Abeona; Batten Research Alliance; American University Centers on Disabilities. An immediate family member of Heather Adams has received publishing royalties from a publication relating to health care. Heather Adams has received personal compensation in the range of $500-$4,999 for serving as a Consultant with Critical Path Institute.
David Bearden, MD (University of Rochester School of Medicine)	Dr. Bearden has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Dr. Bearden has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Praxis. Dr. Bearden has received personal compensation in the range of $100,000-$499,999 for serving as an Expert Witness for law firms.
Rita R. Horvath, MD, PhD	Prof. Horvath has nothing to disclose.
Katherine R. Schon, MD, PhD	Dr. Schon has nothing to disclose.
Nfwama Kawatu	Nfwama Kawatu has nothing to disclose.
Somwe Wa Somwe, MD	Dr. Wa Somwe has nothing to disclose.
Michelle P. Kvalsund, DO (University of Rochester)	Dr. Kvalsund has nothing to disclose.

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