Capturing the Lived Experiences of Informal Care in Acute Leukaemia: A Multinational Qualitative Study

BACKGROUND AND OBJECTIVE: Acute leukaemia is an aggressive rapidly-progressing form of blood cancer that often requires intensive treatment, placing substantial demands on informal carers. In this study, we aimed to explore the lived experience of informal carers of adults with acute leukaemia, including the impact of caregiving on their quality of life and their role in treatment decisions, across six countries.

We conducted a multinational mixed-methods study using semi-structured interviews with 60 informal carers of adults with acute leukaemia in the UK (n = 20), USA (n = 20), France (n = 5), Germany (n = 5), Italy (n = 5) and Spain (n = 5). Demographic data and data from the administration of Family Reported Outcome Measure (FROM-16) were collected prior to the interviews. Interview transcripts were analysed using reflexive thematic analysis.

Informal carers reported a substantial burden: 59% scored in the top two FROM-16 bands, a very large to extremely large impact. We identified four interlinked themes explaining this burden: (1) the carer-patient dynamic reshapes relationships, often deepening emotional closeness while sometimes straining intimacy and family roles; (2) balancing multiple roles, with carers juggling employment, personal and household responsibilities, and caregiving responsibilities, contributing to role conflict, fatigue and financial pressure; (3) putting the patient first, whereby carers become advocates and "lay experts", frequently deprioritising their own health, leisure and social connection; and (4) navigating a role in treatment decisions, with involvement that ranges from exclusion to leadership and carers rarely factoring their own interests into treatment choices.

Informal caregiving in acute leukaemia is associated with a substantial multidimensional burden. Findings support proactive identification and support of carers within acute leukaemia care pathways and more consistent consideration of carer spillovers in health technology assessment and reimbursement decision making.