A qualitative study protocol of ageing carers' caregiving experiences and their planning for continuation of care for their immediate family members with intellectual disability

Abstract

Background: Understanding the difficulties and needs of the family carers in taking care of a person with ID can facilitate the development of appropriate intervention programmes and services to strengthen their caring capacity and empower them to continue with their caring roles. This study aims to explore ageing family carers' caregiving experiences and the plans they have to provide care for themselves and their ageing children with mild or moderate intellectual disability (ID). Method: A constructivist grounded theory will be used to interview around 60 carers who have a family member with mild or moderate ID and attending sheltered workshops in Hong Kong. Constant comparative analysis methods will be used for data analysis. Discussion: The theory will capture family caregiving experiences and the processes of carers in addressing caregiving needs, support received and plans to continue to provide care for themselves and their relatives with ID in their later life. New insights into the emerging issues, needs and plights of family caregivers will be provided to inform the policies and practices of improving the preparation for the ageing process of the persons with ID, and to better support the ageing carers. The theoretical framework that will be generated will be highly practical and useful in generating knowledge about factors that influence the caregiving processes; and, tracking the caregiving journey at different time-points to clearly delineate areas to implement practice changes. In this way, the theoretical framework will be highly useful in guiding timely and appropriate interventions to target at the actual needs of family carers as they themselves are ageing and will need to continue to take care of their family members with ID in the community.