Informing Social Work Practice Through Research With Parent Caregivers of a Child With a Life-Limiting Illness

Abstract

Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful experience that compounds the usual challenges of parenting. The negative aspects of caring for a child with an LLI are well documented. In the face of such adversity, parent caregivers can also experience positive changes caring for children with even the most serious conditions. This article presents results from a research study of posttraumatic growth in parents who are caring for a child with a LLI. Using mixed methods, two overarching themes were prominent in both the quantitative and qualitative data. The first describes stress related to financial burden associated with caregiving. The second theme concerns the posttraumatic growth experienced by the parent caregivers. The quantitative and qualitative data have been woven together to underscore issues and parental perspectives related to these two themes. This provides a unique and important platform for parent caregivers' experiences that can inform the work of social workers and other pediatric palliative care professionals.

KEYWORDS:

• family caregivers
• mixed-methods research
• pediatric palliative care
• posttraumatic growth

Acknowledgments

This work was supported by Canadian Institutes of Health Research Grants PET–69769 and MOP–79526.

Notes

Note. Numbers do not always add up to 273 because of missing data.

Note. Three families did not provide information about their child's diagnosis. Quadrant descriptions (Anonymous, 1997).

Note. Numbers do not always add up to 273 because of missing data.

Note. PTGI = Posttraumatic Growth Inventory.