Strengths of family carers: Looking after a terminally ill adult under 65 years of age

Abstract

Introduction: To learn of a terminal illness is devastating at any age. How much more so when it occurs in early or mid-adulthood, when people are busy with family and career goals. Those facing death when under 65 years of age are a group whose voice is virtually invisible in the palliative caregiving literature. Yet one in every five people die in New Zealand before 65 years of age. For Māori, almost half will die under the age of 65.Methods: Eight bereaved family carers were interviewed with particular focus on the strengths that underpinned and sustained them through the spouse’s illness and death. The research utilised a social construction methodology and thematic analysis of the narratives was undertaken to identify the key themes.Findings: Following analysis, themes emerged relating to the Medical Circle of Care, the Home Circle of Care, Saying Goodbye, and Picking Up the Threads. Further analysis revealed the strengths of love, hope, family, teamwork and resilience in coping with these experiences.Conclusion: Three key findings for palliative care teams emerge from the research. These are to prioritise support for family carers, to enable access to Social Work, and the provision of targeted support for bereaved family carers.