Children with profound intellectual and multiple disabilities and their participation in family activities

Background. Families are essential parts of any community and throughout childhood one’s family serves as the central setting wherein opportunities for participation are offered. There is a lack of knowledge about participation of children with profound intellectual and multiple disabilities (PIMD) in family activities and how improved participation can be reached. Gathering such knowledge could enable an improvement in child functioning and wellbeing and also ease everyday life for families of a child with PIMD. Aim. The overall aim of this thesis was to explore participation seen as presence and engagement in family activities in children with PIMD and to find strategies that might facilitate this participation. Material and Methods. The research was cross-sectional and conducted with descriptive, explorative designs. First a quantitative, comparative design was used including questionnaire data from 60 families with a child with PIMD and 107 families with children with typical development (TD) (I, II). Following that, a qualitative, inductive design was used with data from individual interviews with parents of 11 children with PIMD and nine hired external personal assistants (III). Finally a mixed method design was conducted where collected quantitative data was combined with the qualitative data from the previous studies (IV). Results. It was found that children with PIMD participated less often, compared to children with TD, in a large number of family activities, however they participated more often in four physically less demanding activities. Children with PIMD also participated in a less diverse set of activities. Additionally, they overall had a lower level of engagement in the activities; however, both groups of children showed higher engagement in enjoyable, child-driven activities and lower engagement in routine activities. The motor ability of the child with PIMD was found to be the main child characteristic that affected their presence in the family activities negatively and child cognition was found to be the personal characteristic that affected their engagement in the activities. The child’s presence and engagement were influenced to a lesser extent by family socio-economic factors when compared to families with children with TD. Parents and hired external personal assistants described several strategies to be used to improve participation of the children with PIMD, such as by showing engagement in the activities oneself and by giving the child opportunities to influence the activities. The role of the hired external personal assistant, often considered as a family member for the child, was described as twofold: one supporting or reinforcing role in relation to the child and one balancing role in relation to the parents/the rest of the family, including reducing the experience of being burdened and showing sensitivity to family life and privacy. Conclusion. A child with PIMD affects the family’s functioning and the family’s functioning affects the child. Child and environmental factors can act as barriers that have the result that children with PIMD may experience fewer and less varied activities that can generate engaged interaction within family activities than children with TD do. Accordingly, an awareness and knowledge of facilitating strategies for improved participation in family activities is imperative. There needs to be someone in the child’s environment who sets the scene/stage and facilitates the activity so as to increase presence and engagement in proximal processes based on the child’s needs. The family, in turn, needs someone who can provide respite to obtain balance in the family system. External personal assistance includes these dual roles and is of importance in families with a child with PIMD