Opportunities for participation, inclusion and recreation in school-aged children with disability influences parent occupations and family quality of life: A mixed-methods study

Abstract

Introduction Parents of children with disabilities experience long-term loss of occupations and increased caregiving responsibilities, which affect their individual and family quality of life. There is limited knowledge about the factors that influence the family quality of life of families when their child with disability is at school. This study examined the relationships between family quality of life, disability-related supports provided and parental occupations, and identified factors influencing family quality of life. Method A mixed-methods approach was utilised using the Beach Center Family Quality of Life Survey, a demographic questionnaire ( n = 50) and 12 qualitative interviews. Descriptive analyses and Spearman’s Rho correlations were conducted. Both sets of data were analysed and triangulated. Findings Participants reported high satisfaction with their family quality of life, with strong associations between parental occupations and family quality of life. Four qualitative themes highlighted that their family quality of life was hard, challenging and fluctuating; however, there were positives about having a child with disability, and receiving services and supports (formal and informal) for their child with disability helped family quality of life. In spite of this, caregiving was long-term and impacted their everyday occupations, challenging their family quality of life. Conclusion This study concludes that even though parents of a school-aged child with disability are happy to adopt the caregiver role and appreciate the positives of having a child with disability, lack of support within the mainstream schooling system and prolonged caregiving has a detrimental impact on the parents’ occupations, their health and wellbeing, and consequently on their family quality of life. Inadequate opportunities for recreation and lack of resources to manage persistent behaviours of concern highlight unequal participation opportunities for school-aged children with disabilities.