The hidden psychosocial impact of caregiving with chronic haematological cancers: A qualitative study

Purpose: People living with a chronic haematological malignancy (CHM) are living longer due to the continued emergence of novel treatments. Their care is mostly delivered in an outpatient setting, and little is known about their experience of this disease trajectory. The aim of this qualitative study was to explore carers’ experiences, expressed needs and psychosocial vulnerability. Method: In-depth interviews with a purposive sample of carers (n=11) explored their experiences of caring for someone with a CHM and the impact it had on their lives. Reflexive thematic analysis guided data analysis. Results: Two main themes were developed from the interview data: 1) restructured living, and 2) sustaining caring, with six subthemes: shrinking world, constant carer, healthcare professional support, needing information, particularly in the early days, peer support, and taking control. Conclusions: Caregivers of patients with a CHM undergo a significant life change which is often invisible to others. Identifying carers at risk of psychosocial vulnerability and recognising the caregiver as a member of the care team are significant steps towards addressing the support needs of this population.