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

Abstract

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.

Well-Being of Families with a Child with Profound Intellectual and Multiple Disabilities

“…Family resilience is especially recommended, as it can help understand from a family systems perspective the differences in how families deal with challenges, such as managing pervasive support needs. Systemic and support factors should be considered as well, as more insight into how these factors affect FQOL is needed (Chiu, 2013; Luitwieler et al, 2021). Interviews with family members may also help to better understand how these families function and why, and what their support needs are.…”

“…Informed by previous studies, the following variables were included to determine how each affected FQOL. Age of the child with PIMD (in years; e.g., Boehm & Carter, 2019; Giné et al, 2015; Luitwieler et al, 2021; Schertz et al, 2016), age of the respondent (in years; e.g., Davis & Gavidia-Payne, 2009; Luitwieler et al, 2021; Vanderkerken et al, 2018), gender of the participant (male or female; e.g., Khoury, 2010; Vanderkerken et al, 2018; Wang et al, 2006), employment status of the parent(s) (in weekly hours; e.g., Giné et al, 2015; Mas et al, 2016; Vanderkerken et al, 2018), residence of the child with PIMD (at home or partly at home/out of home; McFelea & Raver, 2012), and annual family income (less than € 65,000 per year or more than € 65,000 per year; e.g., Boehm & Carter, 2019; Luitwieler et al, 2021; Wang et al, 2004). A high income can be defined as the median income doubled (Pew Research Center, 2021).…”

“…Age of the respondent has been found to affect FQOL positively (Luitwieler et al, 2021), negatively (Vanderkerken et al, 2018), or not at all (Davis & Gavidia-Payne, 2009). Family income too has (Boehm & Carter, 2019; Davis & Gavidia-Payne, 2009; Luitwieler et al, 2021; Wang et al, 2004) and has not (Luitwieler et al, 2021) been found to affect FQOL. No studies have looked into how these factors influence the FQOL scores of families with a child with PIMD specifically, and we therefore included these in our study.…”

“…Apart from understanding how families with a child with PIMD experience their FQOL, we are also interested in what factors affect the well-being of these families (Zuna et al, 2010). A growing number of studies have generated more insights into the influence of various factors on the well-being of families with a child with an intellectual disability (Luitwieler et al, 2021). Residence of the child has been found to have an impact on FQOL, in that families whose child with severe disabilities lives at home report higher FQOL scores compared with families whose child lives in a residential facility (McFelea & Raver, 2012).…”

“…For example, parental employment status has (Giné et al, 2015;Vanderkerken et al, 2018) and has not (Mas et al, 2016) been found to affect FQOL. Similarly, age of the child with an intellectual disability has (Giné et al, 2015;Luitwieler et al, 2021) and has not (Boehm & Carter, 2019;Davis & Gavidia-Payne, 2009;Luitwieler et al, 2021;Schertz et al, 2016;Vanderkerken et al, 2018) been found to affect FQOL. Age of the respondent has been found to affect FQOL positively (Luitwieler et al, 2021), negatively (Vanderkerken et al, 2018), or not at all (Davis & Gavidia-Payne, 2009).…”