Growing Stronger Together
Growing Stronger Together
The transition to adulthood is often a challenging time for families of adolescents with profound intellectual and multiple disabilities (PIMD). During this period, care and support services change, daily family life also changes, and concerns about the future often grow. Yet we still know too little about how these families experience this phase and what support is most helpful to them.
In this thesis of Nicole van den Dries-Luitwieler, factors related to the quality of life of these families were studied, as well as how they experience the transition to adulthood and what support they need. In addition, an existing tool was adapted for adolescents with PIMD and their families during this transition. This resulted in the development and evaluation of the SGU-PIMD, a tool that helps families and professionals talk together about the future.
The findings show that families need support that is timely, well coordinated, and fits everyday family life. Parents’ experiential knowledge is essential in shaping that support. This thesis also shows the added value of a researcher with experiential knowledge, particularly when that researcher reflects openly on their own role in the research. The research contributes to support that better matches the needs of adolescents with PIMD and their families.