Challenges and support needs of parents of children with developmental disabilities (DD) in Accra, Ghana

Parents of children with developmental disabilities (DD) have diverse challenges and needs. If met, these parents are able to provide adequate care for their children. Unfulfilled needs like information about their child’s diagnosis, counselling, and poor access to informal and formal supports increase parental stress and hinder their potential to provide optimal care for their children and themselves. This study explores the unique challenges and needs of parents caring for children with DD in the Accra metropolis. This is the first study exploring the needs of parents in a Lower-middle income (LMIC) country like Ghana. A qualitative research design was adopted for this study. Data was collected using semi-structured interviews from 9 parents of children with DD. Findings from thematic analysis revealed five themes including; Emotional needs; Informational needs; Financial needs; Informal Support, and Formalized Support. Parents indicated their great need for information on their children’s condition, support from family, religious groups, and other formalized institutions and how to provide better care. Parents have several expectations and needs which must be addressed. Findings have the potential of influencing the design and development of appropriate interventions to meet the needs and improve the quality of life of parents of children with DD in the Ghanaian context. •Parents of children with DD have emotional, informational, financial and support needs that are not readily available.•Parents have emotional, informational, financial and support needs which they feel are not adequately available.•Societal stigma and discrimination result from their association with their children.•Parents are positive about the importance of self-care, support from caregivers, school and donor agencies.