Exploring and strengthening collaborative partnerships between families with a child with severe disabilities and their informal and formal support systems

Parents have a central and often lifelong role in supporting their child with severe or profound intellectual disability (SPID). They encounter many challenges, causing them to seek support and share care. This does not always work smoothly, because of limited availability and use of support, limited or inadequate collaboration with and between informal caregivers and professionals, and fragmentation of formal as well as informal support sources. The main aim of this project is to get more insight into the perceived quality and effectiveness of formal and informal support and of the collaboration with and between informal caregivers and professionals, and to strengthen supportive partnerships between parents, informal caregivers and professionals. In a survey study, we describe different dimensions of the informal and formal support systems of parents and their child with SPID, identify influencing child and family characteristics and study the effects of support on family quality of life. In an interview study the perspectives of all stakeholders on collaborative partnerships between families, informal caregivers and professionals are analyzed more deeply. In a participatory action research a procedure and targeted strategies are implemented to strengthen these collaborative partnerships, to increase the families' quality of life.

Keywords:Family quality of life, Family support, Families, Informal care, High support needs

Disciplines:Disabilities and developmental disorders, Orthopedagogical interventions, Parenting support