Exploring the experience of parent caregiving: How parent caregivers of children with a disabilities create well-being in their lives

Abstract

A phenomenological study was used to explore the unique experience of parent caregiving in dual-parent families. Specifically, this study examines the similarities and differences in relation to the construction and maintenance of healthy caregiving and leisure lifestyles. The participants of the research study were deemed, by the study gatekeeper, to be living well in their caregiving role. The data collected through a focus group and individual interviews with each family gained insight in relation to the lived experiences, values and motivations of the parents and families to create a life of well-being. The results of the research study addressed the “ingredients to living well” that illustrate the individual approach each family took to create a caregiving and leisure lifestyle influenced by the follow four components, 1) values-based parenting and family life, 2) the acceptance of disability in family life, 3) leisure a source of positivity and connection and 4) leisure as self-care in a caregiving lifestyle. The “ingredients to living well” concluding that the ability of a caregiving family to look beyond the limitations of the child with a disability, acceptance of the child as a contributing family member, using leisure to connect as a family with the child with a disability and establishing self-care practices for parents to maintain balance are foundational aspects of creating well-being in the highly demanding lives of parent caregivers.