“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

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. 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. 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. 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.