‘The missing discourse’: how does the family history of cancer affect the care needs of palliative care patients?

摘要

There is increasing scientific understanding and growing public awareness of the influence of genetics on the development of cancer. It is known that up to ten percent of cancers are associated with a genetic predisposition. This study asks ‘How does the family history of cancer affect the care needs of palliative care patients?’ in this context. This question is addressed using the principles of phenomenology to explore the meaning of a family history of cancer for palliative care patients and nurses. Data was collected through recorded, semi-structured interviews with purposively sampled participants. The information obtained was analyzed using Miles and Huberman’s (1994) framework, where data is displayed, reduced, and conclusions drawn. Emergent themes were organized around Van Manen’s (1990) schema for existential reflection, which considers the relationship between phenomena and four universal themes: lived-body, lived-relationship, lived-time and lived-space. Findings describe how the physical, social, emotional and cultural dimensions of care are modified when viewed through the genetic lens. Patients’ poor understanding of cancer and novice nursing practice (Benner 1984) were barriers to appropriately meeting the needs of this patient group. A new approach to the care of palliative patients with a family history of cancer is proposed.