Family Caregivers of Individuals with Intellectual Disability: Perspectives on Life Quality and the Role of Vacations

Abstract

Existing literature on quality of life (QOL) among individuals with intellectual disability and their families is largely etic in nature and, although leisure is often advanced as a core contributor, the role vacations play has not been directly examined. Drawn from phase one results of a larger, multi-year study, our purpose in this paper is to highlight the perspectives of family caregivers (i.e., biological and adoptive parents, and adult siblings) of individuals with intellectual disability on the meaning of QOL and the influence of vacation behaviour in its construction. Data collection was done via focus groups, while a grounded theory approach was employed as the analytical framework. For the participants in this study, personal health and basic need fulfillment were foundational elements, with QOL being a much broader and encompassing concept that integrates meaningful and enriching social connections with friends and family, and perceived control, freedom and independence. Financial resources, quality respite, and health and impairment concerns specific to the family member with a disability also were key factors that had the capacity to facilitate or constrain life quality. Respite and health/impairment issues also demonstrate how caregivers' personal perspectives about QOL often meld with concerns affecting other family members—hence blurring the distinction between individual and family conceptions of life quality. Revealed as unique to this research and population group, are the complex features of family vacations that involve a child with intellectual disability (e.g., “outsiders” on vacations), which illustrate how typical and atypical costs and benefits of vacationing are magnified.

KEYWORDS:

• Quality of life
• intellectual disability
• family caregiving
• vacation
• leisure