State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

Abstract

Background: In recent years, there has been a growing international interest in family quality of life The objective of this systematic review is to understand and analyze the conceptualization of the quality of life of families with children with disabilities between 0 and 6 years of age, the instruments for their measurement and the most relevant research results. Method: A bibliographic search was conducted in the Web of Science, Scopus and Eric databases of studies published in English and Spanish from 2000 to July 2019 focused on “family quality of life” or “quality of family life” in the disability field. A total of 63 studies were selected from a total of 1119 and analyzed for their theoretical and applied contributions to the field of early care. Results: The functional conceptualization of family quality of life predominates in this area, and a nascent and enriching holistic conceptualization is appreciated. There are three instruments that measure family quality of life in early care, although none of them is based on unified theory of FQoL; none of them focus exclusively on the age range 0–6 nor do they cover all disabilities. Conclusions: The need to deepen the dynamic interaction of family relationships and to understand the ethical requirement that the methods used to approach family quality of life respect the holistic nature of the research is noted.

Siblings of children with intellectual and developmental disabilities: Quality of life perceptions from Catalonia

“…Likewise, Luijkx et al (2016) noted that siblings' reports differ from those of their parents when asked about their quality of life. This is consistent with an ongoing concern in the FQOL field that it is desirable to collect the views of all family members, since we already know that family members may have somewhat different perceptions from each other (Francisco Mora et al, 2020;Gardiner & Iarocci, 2015;Wang et al, 2006).…”

Assessing the quality of life in the families of patients with epidermolysis bullosa: The mothers as main caregivers

“…The FQoL in families with disabled children is often impaired because of several factors, including familial, social, and economic issues ( Francisco Mora et al, 2020 ). Providing care for family members with a chronic disease can be very stressful and time consuming for caregivers and thus impact their quality of life.…”

Quality of life of Brazilian families who have children with Williams syndrome

“…A significant number of studies relate intellectual disability and lower FQoL, showing that rehabilitation and social support to address the rights and needs of disabled people and their families are an emerging priority in many countries (Balcells-Balcells et al, 2019; Francisco Mora et al, 2020; Oliveira et al, 2019; Rodrigues et al, 2019; Staunton et al, 2020; Vanderkerken et al, 2019; Vilaseca et al, 2017). However, to the best of our knowledge, there are no specific studies on FQoL in families who have children with WS.…”

“…There has also been growing interest in studies that seek to identify aspects of family unity and dynamics, including sociodemographic aspects, which have an impact on FQoL (Schlebusch et al, 2017; Vanderkerken et al, 2019; Algood and Davis, 2019). In this context, FQoL has been identified as an important framework for policy and social support for families of children with disabilities, which may lead to improved family well-being (Francisco Mora et al, 2020; Fong et al, 2020).…”