Variables related to the quality of life of families that have a child with severe to profound intellectual disabilities: A systematic review.

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.

Time use of parents raising children with severe or profound intellectual and multiple disabilities.

BACKGROUND: Raising children with severe or profound intellectual and multiple disabilities (PIMD) is expected to put extreme pressure on parental time use patterns. The aim of this study was to examine the total time use of mothers and fathers raising children with PIMD and compare it with the time use of parents of typically developing children. METHOD: Twenty-seven fathers and 30 mothers raising children with PIMD completed a time use diary on a mobile phone or tablet app, as did 66 fathers and 109 mothers of typically developing children. Independent t-tests and Mann-Whitney tests were performed to compare mean time use. RESULTS: There are no differences in the time use of parents of children with PIMD on contracted time (paid work and educational activities) and necessary time (personal care, eating and drinking and sleeping) when compared with parents of typically developing children. There are significant differences between the parents of children with PIMD and the parents of typically developing children in terms of committed time (time for domestic work and the care and supervision of their children) and free time. The mothers of children with PIMD spend significantly less time on domestic work and more time on care and supervision than mothers of typically developing children. CONCLUSIONS: 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.

Does the severity of disability matter? The opinion of parents about professional support in residential facilities.

BACKGROUND: Researchers have shown that the characteristics of a person with an intellectual disability (ID), in particular the severity of the disability, are related to the outcomes of professional support. Hardly any studies have asked parents and/or legal guardians for their own opinion about the quality of support given to their child/family member with ID. Therefore, this study examined the relationship between the severity of a person's disability and the opinions voiced by the parents and/or other legal guardians of that person concerning several aspects of the quality of support received in residential care. METHOD: Questionnaires were completed by 1058 parents and/or legal guardians of people with ID living in residential facilities. A multiple covariance analysis was conducted to explore the relationship between the severity of the disability and the parents' and/or legal guardians' opinions. RESULTS: Only small differences in the opinions about the quality of support were observed between parents and/or legal guardians of people with mild to moderate ID and those of people with severe to profound ID. CONCLUSION: This study showed that there are differences in parental opinions about the quality of support, but that most of these differences are not related to the severity of disability. The only significant difference related to the severity of disability is on the leisure activities domain. Parents and/or legal guardians of a person with severe/profound ID were less satisfied with leisure activities than parents and/or legal guardians of persons with mild/moderate ID. It is important to determine to what other factors parental opinions are related, as these opinions concerning the quality of support are important measures alongside client self-reports and measures of the facility itself. The quality of support should be measured using a combination of methods for different stakeholders.