City Research Online

Abstract

This grounded theory research explores patients’ experiences and the supportive care implications of living with the incurable and progressive bone marrow cancer multiple myeloma. Patients (n=17), family members (n=11) and healthcare professionals (n=12) participated in the research. A total of 46 semi-structured and recorded interviews were undertaken and transcribed verbatim (three couples were interviewed twice n=6). Some participants were interviewed individually while others were interviewed as a couple or small family group. The methodology employed aimed to generate theory in an area of limited qualitative exploration and findings were determined through the procedures of theoretical sampling and constant comparative analysis. ‘Contention’ was the core category that emerged in the form of ‘struggle’ with close affiliation to other prominent interrelating concepts such as ‘battle’ or ‘fight’, ‘disruption’ and ‘disharmony’. The findings are described within four categories of ‘Ways of communication’, ‘Nature of the disease’, ‘Impact on life’ and ‘Supportive care needs’.

This research provides insight of individuals’ life experiences living with a complex haematological malignancy that is poorly understood. Implications for practice relate to development of collaborative approaches to healthcare and the identification of supportive care needs. This work contributes increased awareness and understanding of multiple myeloma and the impact that the disease has on the individual and on family life. It also highlights the value of effective communication and collaboration between patients, families and healthcare professionals to identify supportive care needs at specific times along the illness trajectory and inform service provision and the development of effective care pathways. Indications for further research are included. A Family Self-Assessment Referral Plan and Model of Supportive Care, based on the research findings, are currently being developed in collaboration with patients, families, professionals and Myeloma UK.

Publication Type:	Thesis (Doctoral)
Subjects:	R Medicine > RT Nursing
Departments:	Doctoral Theses School of Health & Psychological Sciences > School of Health & Psychological Sciences Doctoral Theses School of Health & Psychological Sciences > Nursing

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