Making sense of advanced cancer: using narrative at the end of life to identify information and supportive care needs

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Abstract

Introduction

Narrative research methods are widely used in social sciences to gain insight into illness experiences and social constructions of health. Qualitative analysis of narrative interviews are increasingly utilised to improve knowledge of individuals’ unmet needs at the end of life. However, use of storytelling to understand concepts of hope and meaning has been relatively underexplored in palliative care settings.

Aims

Explore the experiences of hospice patients with advanced cancer and their close relatives, and the impact of these on cancer beliefs.

Methods

Semi-structured interviews were conducted with 14 patients with breast, bowel or lung cancer in the last weeks or months of life, and their close family members. The social science literature and theory of narrative coherence guided qualitative analysis using a constant comparison method.

Results

Patient narratives followed a pattern of initial confusion and chaos at the time of diagnosis which later transcended to accounts focused on creating sense, hope and meaning. Leaving a legacy was an important part of fostering hope in the face of acceptance of dying. In contrast, narratives from relatives were dominated by persistent chaos, exemplified by a sense of helplessness and fear. Diagnostic delays, awareness of their own mortality and perceptions of ‘feeling out of the loop’ exacerbated these negative experiences, which frequently resulted in cancer fatalism and information avoidance.

Conclusion

Narrative analysis of individuals’ stories can facilitate development of client-centred palliative care services. Case studies are presented that demonstrate important points at which information provision and supportive care could be improved.

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