Caring for children with neurodevelopmental disability: Experiences from caretakers and health workers in rural
Gertrude Namazzi1, Claudia Hanson2,3, Christine Nalwadda4
1Department of Health Policy, Planning and Management, School of Public Health, College of Health Sciences, Makerere University, Kampala, Uganda.
Insights
Caring for infants with neurodevelopmental disability in Uganda is impoverishing and isolating for families. Improved health services, community awareness, and parental support are crucial for better outcomes.
Area of Science:
- Global health
- Pediatric health outcomes
- Neurodevelopmental disorders
Background:
- Long-term outcomes for children with neurodevelopmental disabilities (NDD) are influenced by the condition, health services, and caregiver support.
- Most children with NDD reside in resource-constrained settings, necessitating context-specific interventions.
- Understanding caregiver and health worker experiences is vital for designing effective support systems.
Purpose of the Study:
- To explore the experiences of health workers and caretakers in caring for infants with neurodevelopmental disability in rural eastern Uganda.
- To identify challenges and needs for improving care and interventions for children with NDD in resource-limited environments.
Main Methods:
- A qualitative case study was conducted in Iganga/Mayuge, Uganda.
- In-depth interviews were held with 14 caretakers of infants with severe NDD and 5 health workers.
- Data analysis involved latent content analysis of interviews conducted in Lusoga and English.
Main Results:
- Caretakers described caregiving as "impoverishing" and "imprisoning" due to high costs, loss of income, and significant nursing challenges.
- Beliefs in supernatural causes for NDD were reported, alongside difficulties in care-seeking due to costs and perceived lack of improvement.
- The healthcare system demonstrated limitations in addressing NDD needs, citing commodity shortages and human resource constraints.
Conclusions:
- Caretakers experience significant emotional stress and a high nursing burden, often feeling isolated.
- Improvements in health services, including a holistic approach, enhanced community awareness, and parental support, are recommended to aid in the care of children with NDD.
Background:
Long term outcomes of children with neurodevelopmental disability are influenced by the condition itself, available health services and caretakers' coping ability to nurture the children which may be related to their beliefs and experiences. Most children with neurodevelopmental disabilities live in resource constrained settings. To inform design of contextually appropriate interventions, this study explored health workers' and caretakers' experiences in caring for infants with neurodevelopmental disability in rural eastern Uganda.
Methods:
A qualitative case study was carried out in December 2017 and involved in-depth interviews with 14 caretakers of infants with severe neurodevelopmental disability, and five health workers in Iganga/Mayuge Demographic Surveillance Site in eastern Uganda. The interviews with caretakers were conducted in Lusoga, the local language, and in English for the health workers, using a pre-determined open-ended interview guide. Data were analyzed using latent content analysis.
Results:
Caretakers described the experience of caring for children with neurodevelopmental disability as impoverishing and 'imprisoning' due to high care costs, inability to return to income generating activities and nursing challenges. The latter resulted from failure in body control and several aspects of nutrition and maintaining vital functions, coupled with limited support from the community and the health system. Many caretakers expressed beliefs in supernatural causes of neurodevelopmental disability though they reported about complications during and shortly after the birth of the affected child. Care-seeking was often challenging and impeded by costs and the feeling of lack of improvement. The health care system was also found to be incapable of adequately addressing the needs of such children due to lack of commodities, and human resource limitations.
Conclusion:
The caretakers expressed a feeling of emotional stress due to being left alone with a high nursing burden. Improvement in the health services including a holistic approach to care, improved community awareness and parental support could contribute to nursing of children with NDD.
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