Family matters:The experiences and opinions of family members of persons with (severe) or profound intellectual disabilities

“I love my sister, but sometimes I don’t”. This is one of the statements made in the study focused on the experiences of family members of people with (profound) intellectual (and multiple) disabilities (both of individuals living in a residential facility as persons living at home). In recent years, there has been greater recognition of the important position of parents and siblings of people with (profound) intellectual (and multiple) disabilities and the importance of the wellbeing of all family members, but there is still a lack of knowledge concerning this topic. The experiences of siblings, for example, are often neglected, but are analyzed in this study. Although the experiences of siblings of children with profound intellectual and multiple disabilities are predominantly positive, they also experience difficulties growing up with a sibling with a disability. Some siblings for example experienced problems in dealing with the behaviour of their brother or sister. Next to this, the study showed that parents of children with profound intellectual and multiple disabilities, in spite of the professional support for their child, spent a much higher proportion of their time on care and supervision of their children than parents of children without disabilities. Parents indicate that this disrupts their daily habits. The majority of families also indicated negative consequences on their social life and financial situation of having a child with such profound disabilities. Despite the strong negative impact on family life, the majority of parents also experience a positive impact on their families. Finally, the results showed that the majority of parents (or other relatives) are satisfied with the quality of support provided in a residential facility. Nevertheless, a considerable proportion of parents was dissatisfied, or only marginally satisfied with the quality of support. This study shows how important it is to also pay attention to the situation and needs of the family members of people with (profound) intellectual (and multiple) disabilities and to offer support tailored to the needs of all family members in order to achieve optimal quality of life of all family members

A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life

Background: This study analysed parents' positive and negative appraisals of the impact of raising children with profound intellectual and multiple disabilities (PIMD) on family life. Method: Mothers (n = 52) and fathers (n = 27) of 56 children with PIMD completed a questionnaire focused on their positive and negative appraisals of the impact of childhood disability on family life. Scale means (ranging from 10 to 40) were calculated, as was the relationship between the two subscales. Results: Mothers and fathers indicated that their children affect family life both positively (M = 31.4 and 32.8, respectively) and negatively (M = 31.3 and 28.5, respectively). Only fathers showed a positive significant relationship between the positive and negative subscales. Conclusions: Parents' positive and negative appraisals co-occur. Although parents positively appraise the impact on family life, their substantial negative appraisals demand tailored support for families raising children with PIMD with a strong focus on practical support