Providing Care to People Living with a Chronic Hematological Malignancy: A Qualitative Evidence Synthesis of Informal Carers’ Experiences

Objective: Chronic hematological malignancies such as multiple myeloma, chronic lymphocytic leukemia (CLL), indolent B-cell lymphomas, and myelodysplastic syndromes (MDS) have seen significant advances in treatment. Treatment developments have resulted in patients living for many years, often between periods of being acutely unwell, relapses, and remission. Informal carers play a major role in supporting patients through the uncertain and long illness trajectory. This qualitative evidence synthesis (QES) aims to synthesize qualitative research evidence on the experiences of informal carers caring for a patient with a chronic hematological malignancy (CHM). Data Sources: This qualitative evidence synthesis followed the Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) guidelines and adopted a “best fit” framework synthesis approach using a “redefining normal” conceptual framework. A systematic search of seven databases was undertaken. Conclusion: Sixteen qualitative studies were synthesized in this review. Eight review findings illuminated carers’ unmet information needs, challenges with caring responsibilities, end-of-life care, and changes in the dyad carer-patient relationship. Implications for Nursing Practice: This best-fit framework synthesis illuminates the wide-ranging challenges experienced by informal caregivers of people living with a chronic hematological malignancy. Carers’ fear for the future highlights the need for interventions to support them with their fears. Carers’ priority on their loved one's quality of life is impaired by late end-of-life discussions often not occurring until a sudden deterioration in the patient's condition. Early supportive relationships between carers and health care providers can promote conversations on poor prognosis and end-of-life care. Future research should focus on qualitative longitudinal studies with caregiver-patient dyads.