The holistic model of leukaemia survivorship care: derived from a qualitative exploration of leukaemia survivorship.

Abstract

Purpose: Increasing survival rates have left many leukaemia survivors with debilitating effects from the disease and its treatments. However, little is known about the persistent unmet needs of people living with leukaemia.

Methods: We aimed to qualitatively explore the experiences of individuals living with leukaemia and suitability of the Clinical Oncology Society of Australia's (COSA) Model of Survivorship Care (2016) to reflect leukaemia survivorship. We used an inductive qualitative approach, conducting semi-structured interviews with leukaemia survivors recruited via social media and cancer advocacy organisations. Interviews were continued until information power was deemed appropriate. Reflexive thematic analysis (RTA) was used to describe and interpret key themes and meta-themes in the data.

Results: Overall findings were examined alongside the COSA Model. Twenty-four leukaemia survivors were interviewed; six themes were identified: (1) leukaemia is impactful, life-altering, and unexpected; (2) leukaemia is enduring, life-limiting, and uncertain; (3) survivorship is a team effort; (4) centrality of work as identity, focus, and financial security; (5) the dynamic landscape of coping; and (6) survivorship as adjusting. Overall, participants described leukaemia survivorship as (1) recursive and (2) holistic.

Conclusions: Our findings, while broadly corresponding with the COSA Model, demonstrate it lacks nuances specific to leukaemia survivorship. We recommended the HMLS be used to guide future leukaemia-specific development of the COSA Model and survivorship services.

Implications for cancer survivors: We identified key domains and stages common across leukaemia survivorship, presented in our proposed Holistic Model of Leukaemia Survivorship (HMLS), addressing these domains are critical to the provision of quality survivorship care.