This study shows that the parents of children with PIMD have to spend a significant amount of time on care tasks and have on average 1.5 h less free time per day than parents of typically developing children. This is a striking difference, because leisure time can substantially contribute to well-being. Therefore, it is important not only to consider a child with PIMD's support needs but also to identify what parents need to continue their children's daily care and supervision.

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.

Background Many previous family quality of life studies have relied on parental information for understanding if and how having a sibling with profound intellectual and multiple disabilities (PIMD) influences the sibling's quality of life. In the current study, children had the opportunity to describe both positive and negative aspects of having a sibling with PIMD. Method Photo elicitation interviews were conducted with 18 children (6-13 years old) and thematically analysed using the following domains: joint activities, mutual understanding, private time, acceptance, forbearance, trust in wellbeing, exchanging experiences, social support, and dealing with the outside world. Results Overall, the children described both positive and negative experiences, indicating that having a sibling with PIMD influenced their quality of life in multiple ways. Most mentioned were experiences classified in the joint activities domain. Conclusion Having a sibling with PIMD influences the life of the interviewed children both positively and negatively. Both the opportunity for shared activities with the sibling with PIMD and moments of private time are important for sibling quality of life.

Background Family quality of life (FQoL) of families that have a child with severe to profound intellectual disabilities (SPID) is an important and emerging concept, however, related variables are inconclusive. Aim To gain a better understanding of variables related to the FQoL of families that have a child with SPID, variables related to the FQoL of families that have a child with intellectual disabilities (ID) were systematically reviewed. Methods and procedures A search strategy was performed in five databases. Critical appraisal tools were employed to evaluate the quality of both quantitative and qualitative studies. Data extraction and synthesis occurred to establish general study characteristics, variables, and theoretical concepts. Variables were categorised into four key concepts of the FQoL: systemic concepts, performance concepts, family-unit concepts and individual-member concepts. Outcomes and results A total of 40 studies were retrieved with 98 variables. Quality scores ranged from 7 to 13 (quantitative) and 5 to 13 (qualitative) out of 13 and 14 points, respectively. Five out of the 40 studies (13%) focused on individuals with SPID. Variables related positively or negatively to the FQoL, and were categorised within systemic concepts (n = 3); performance concepts (n = 11); family-unit concepts (n = 26); and individual-member concepts (n = 58). Conclusions and implications Several variables were found to be (inter)related to the FQoL of families that have a child with ID. A contrasting picture emerged regarding the impact of a disability in relation to transitional phases. However, studies which include families of children with SPID were minimal, therefore, it remained ambiguous to what extent the identified variables apply to these families.

As parents and/or legal guardians are considered to be part of the care system of a person with intellectual disabilities (ID), it is of import to acquire more specific and transparent views from parents and/or legal guardians regarding quality of support. This study examined the views of parents and/or legal guardians on the quality of support provided to clients with an ID in residential care in the Netherlands, in order to improve the partnership between parents/legal guardians and facilities. A questionnaire developed in close cooperation with parents specifically for this aim was sent to 1,785 households (parents and/or legal guardians) of clients in the Netherlands. The questionnaire consists of the following five subsections: daily care, housing, day services, leisure activities, and communication. A multiple regression analysis was performed to determine which factors contributed to the satisfaction of parents and/or legal guardians. The questionnaires returned (n = 1,058) showed that respondents rated the overall quality of support at an average grade of 7.3 out of 10 (SD: 1.2). Small but mostly significant differences were found between the subsections. A significant model for the overall quality of support emerged; nevertheless, the predictor variables accounted for only 4.0% of the explained variance in the data set. Special attention should be paid to the percentage of parents and/or legal guardians who gave unsatisfactory scores (10%) and the substantial percentage (25%) of parents and/or legal guardians that rated the quality of care only marginally satisfactory (grades 6-7). The results of this questionnaire provide opportunities for optimal use of the qualities and knowledge of parents and/or legal guardians, opportunities for mutual communication between the service organization and parents and/or legal guardians, and guidance for policy regarding improvements in support.