Family quality of life when there is a child with disability: a mixed methods study

Introduction:Having a child with disability has an influence on parents, family mem-bers and family quality of life (FQOL). Many parents give up their previous occupa-tions such as self-care, and paid work to be able to provide long-term caregiving.This research investigated parent perspectives of their FQOL when there is a childwith disability in an Australian context. Relationships between early childhood inter-vention services (ECIS), parent occupations, and FQOL were also examined.Method:Two mixed methods studies were conducted including 122 participants, and24 in-depth interviews. The Beach Center family quality of life survey (BC-FQOLS),and a demographic questionnaire were used. Data were analysed using Spearman’scorrelations, descriptive scores and qualitative coding analyses. A two-way analysisof variance (ANOVA) was conducted to compare scores from both studies. A com-parative analysis of qualitative data was conducted.Findings:There were associations between parent occupations, ECIS/disability-related support and FQOL in both groups. The significant differences in the ANOVAscores from the BC-FQOLS between the groups indicated that FQOL scores reducedas children got older.Positive adaptations, positive beliefs and positive transformations contributed tobetter levels of FQOL. Parents in the ECIS group hoped to return to their previousoccupations; however, most parents/caregivers from the school-aged group wereunable to return to their previous occupations, especially work.Necessary occupations such as sleep and health care continued to be compro-mised. Family-centred care had a positive influence on FQOL. Respite care and peri-ods of short-term residential care, were crucial for parents and helped FQOL.Conclusion:This study concludes that even though parents are happy to adopt thecaregiver role, loss of occupations can have detrimental impacts on their long-termwell-being, and consequently on their FQOL. Despite feeling satisfaction with theirFQOL, the challenges of caregiving increase, as the child gets older.