“You don’t expect a miracle to happen soon”: a qualitative study of psychosocial support needs of caregivers of children with disability in Eastern Uganda
File(s)
Published version
Author(s)
Type
Journal Article
Abstract
Background
Globally, an estimated 53 million children under 5 years live with disabilities. The majority live in low- and middle-income countries. The government of Uganda legislated the Uganda National Social Protection Policy in 2015 and the Persons with Disabilities Act in 2020 to foster an inclusive and non-discriminatory environment. However, challenges and implementation gaps persist. Previous studies highlighted the caring burden on caregivers of infants with disabilities. We explored the lived experiences of parents of children with developmental disabilities in Uganda, focusing on the effects of children’s disabilities on daily life, the strategies they use to cope with these challenges and their unmet psychosocial support needs. By capturing these caregiver perspectives, the study seeks to inform inclusive programme designs and policies, particularly in low-resource settings.
Methods
This qualitative study was conducted at an outpatient paediatric neurology clinic annexed to a regional referral hospital in Eastern Uganda in March 2024. In-depth interviews were held, using an interview guide, with nine primary caregivers of children between 1 and 6 years old with developmental disabilities to capture insights into their experiences and support needs and two healthcare professionals to obtain their perspectives. Data were transcribed, coded, and thematically analysed using a framework approach.
Results
Five themes were identified: ‘struggles’, ‘information’, ‘faith’, ‘accepting the situation’ and ‘looking for a solution’. Mothers faced emotional and financial ‘struggles’ caring for children with developmental disabilities and prejudice extending from spiritual beliefs. They found comfort in ‘faith’ and were determined to seek ‘information’ and a cure for the conditions; however, a large knowledge gap existed due to the lack of accurate and trustworthy information, which opened further because of their isolation from the community. Many learned to cope through ‘accepting the situation’, but continued ‘looking for a solution’ to children’s conditions. Healthcare providers also called for health system changes to provide further support.
Conclusions
Better access to information, education, social care, and counselling services and cross-sector collaboration are needed to remove the stigma and enhance caregivers’ quality of life. The development of holistic cross-sector support interventions are required.
Globally, an estimated 53 million children under 5 years live with disabilities. The majority live in low- and middle-income countries. The government of Uganda legislated the Uganda National Social Protection Policy in 2015 and the Persons with Disabilities Act in 2020 to foster an inclusive and non-discriminatory environment. However, challenges and implementation gaps persist. Previous studies highlighted the caring burden on caregivers of infants with disabilities. We explored the lived experiences of parents of children with developmental disabilities in Uganda, focusing on the effects of children’s disabilities on daily life, the strategies they use to cope with these challenges and their unmet psychosocial support needs. By capturing these caregiver perspectives, the study seeks to inform inclusive programme designs and policies, particularly in low-resource settings.
Methods
This qualitative study was conducted at an outpatient paediatric neurology clinic annexed to a regional referral hospital in Eastern Uganda in March 2024. In-depth interviews were held, using an interview guide, with nine primary caregivers of children between 1 and 6 years old with developmental disabilities to capture insights into their experiences and support needs and two healthcare professionals to obtain their perspectives. Data were transcribed, coded, and thematically analysed using a framework approach.
Results
Five themes were identified: ‘struggles’, ‘information’, ‘faith’, ‘accepting the situation’ and ‘looking for a solution’. Mothers faced emotional and financial ‘struggles’ caring for children with developmental disabilities and prejudice extending from spiritual beliefs. They found comfort in ‘faith’ and were determined to seek ‘information’ and a cure for the conditions; however, a large knowledge gap existed due to the lack of accurate and trustworthy information, which opened further because of their isolation from the community. Many learned to cope through ‘accepting the situation’, but continued ‘looking for a solution’ to children’s conditions. Healthcare providers also called for health system changes to provide further support.
Conclusions
Better access to information, education, social care, and counselling services and cross-sector collaboration are needed to remove the stigma and enhance caregivers’ quality of life. The development of holistic cross-sector support interventions are required.
Date Issued
2026-12-01
Date Acceptance
2026-04-14
Citation
BMC Pediatrics, 2026, 26
ISSN
1471-2431
Publisher
BMC
Journal / Book Title
BMC Pediatrics
Volume
26
Copyright Statement
© The Author(s). This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
License URL
Identifier
10.1186/s12887-026-06906-3
Subjects
Neurodevelopmental conditions
Coping mechanisms
Psychosocial support
Support needs
Post-infancy children
Primary caregivers
Eastern Uganda
Intervention
Publication Status
Published
Article Number
ARTN 533
Date Publish Online
2026-04-23