Family experiences of the cancer journey

• Main Author: Seal, Karen
• Published: Lancaster University 2011
• Subjects: 616.196994
• Online Access: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.587080

This doctoral thesis broadly details the experience of informal caregivers throughout the cancer journey. The thesis is composed of a literature review, a research paper and a critical review. Finally, a section is dedicated to the ethical procedures undertaken prior to undertaking the research. The literature review uses a meta-ethnographic approach to synthesise the findings of 17 qualitative papers focusing upon the experience of providing care for a loved one with cancer. Through this, four key concepts arose: "identity and adopting the caring role", "the perception of care tasks", "relationship dynamic changes as a result of caring" and "growth and change following caring". Additionally, through the synthesis of translation, a model depicting the caregiving experience is proposed. The implications of this upon clinical practice are discussed. The research paper uses a narrative framework for interviewing and analysis to explore the stories of 10 family members who were involved in their loved one's care. Specifically, the sample includes participants whose loved one had expressed a wish to die at home, but this had not been fulfilled. The analysis presented a temporal description of the narrators' journey, from diagnosis through to , reflections after death. Through the stories, various reasons were presented for a home death being impossible. Finally, there is a discussion around the clinical and practice implications of the findings. Finally, the critical review presents personal reflections about the process of conducting research with bereaved participants. In particular, there is a consideration of the ethical issues, along with the utility of narrative approaches in such studies. Overall, the thesis presents the finding that cancer and palliative care services need to account for the psychological well-being of families and others providing care, in addition to the person with cancer.