Needs assessment of caregivers of children with disabilities in resource-limited settings

Objective: This study aimed to identify and classify the needs of caregivers of children with disabilities living in resource-limited settings and develop a framework for need assessment. Participants and Methods: This study was conducted in the Maha Sarakham Province, Thailand, with 15 caregivers caring for children with disabilities recruited from hospitals, the Association for the Disabled, and primary health centers. Semi-structured interviews were conducted in local dialects, recorded, transcribed, converted into standard Thai, and then into English for thematic analysis. Meaning units corresponding to caregivers’ needs were extracted, interpreted, coded, and hierarchically organized into subcategories by comparing similarities and differences among the extracted codes. The subcategories were further grouped and abstracted into categories, and then domains of caregivers’ needs were formed. Results: Nineteen categories were identified across five domains of caregivers’ needs: health and medical, welfare, educational, social, and informational. Although basic medical treatment was covered, specific support, such as referral to a specialist, rehabilitation, or psychological support, was limited. Financial support and relief from the care burden are the main welfare needs. Educational needs were identified to provide knowledge to children and to offer respite to their caregivers. Social needs revealed ethical problems that arose because of strong rural community ties, making it difficult to maintain privacy. Informational needs were intertwined with the other four domains. In rural areas, where parents of children with disabilities migrate to cities to find work, the special needs of grandparents who were primary caregivers of the children needed to be addressed. Conclusion: This study provides a conceptual framework for comprehensive needs assessment and policy development for caregivers of children with disabilities living in resource-limited settings.