Experiences and support needs of families raising adolescents with profound intellectual and multiple disabilities during the transition to adulthood

There is a lack of knowledge about families raising adolescents with profound intellectual and multiple disabilities (PIMD) during the transition to adulthood. This study explores the experiences and support needs of these families throughout this transition. A qualitative design was used, consisting of semi-structured interviews with mothers (N = 10) of children aged 10 to 23 with PIMD. The interviews were analyzed via a coding scheme based on a theoretical framework for family quality of life (FQOL) and stages of adolescence. Positive and negative experiences and distinct support needs were examined in the FQOL domains and stages of adolescence. These families have a unique need for information on development and participation opportunities for children with PIMD, and how to support them. Other needs and experiences expressed, such as dealing with hormonal changes and with being transferred from paediatric to adult care services, were consistent with other families with support needs. The obtained knowledge can be used to improve support for families with an adolescent child with PIMD. In addition, future research in this area is recommended and should be grounded in a family-centred, strengths-based, longitudinal approach.