A phenomenological exploration of caregivers of children with disabilities: Challenges and adaptation

This dissertation is a compilation of three studies related to understanding the caregiver's lived experiences of caring for a child with a disability. The research examined possible associated contextual factors that may lead to child maltreatment. These factors included stress brought on by such things as financial strain, social isolation, and limited education. The purpose of the three interrelated studies was to create an opportunity for a group of caregivers to share their personal perspectives of caring for a child with a disability.

In the first study (Chapter Three) seven caregivers of children with moderate to severe disabilities shared their personal perspectives and identified occupational challenges related to their caregiving experiences. Themes that emerged from the data were stress, emotional issues, views on occupation, and adaptation.

The purpose of the second study (Chapter Four) was to explore issues caregivers faced when caring for his or her child. In this contextual analysis, the same seven caregivers from the first study completed a questionnaire, were interviewed individually, and assisted the researcher in constructing an ecomap of their current living environment. Content from the interviews was analyzed. Themes that emerged from the data were relationships and context.

The third study (Chapter Five) employed a focus group format. The intent of this study was particularly important as it related not only to understanding the caregiver's perspective, but how various challenges often result in increased stress. The same seven caregivers were interviewed using semi-structured open-ended questions. Content from the interviews were analyzed to develop the following prominent themes: images of support, challenges, adaptation, and spirituality.

Chapter Six (discussion and implications) explains the significance of this research to occupational therapy in understanding the caregiver's perspective and provides implications for prevention of abuse and neglect of children with disabilities. The results from this research revealed that caregivers of children with disabilities are faced with many challenges and stressors. Increased stress may lead to child abuse and neglect. Further research is needed in occupational therapy on the prevention of child abuse and neglect.