"It feels like you are the only one": A qualitative study of the unmet needs of lymphoma survivors.

PURPOSE: To explore the experiences of lymphoma survivors one to five years post-diagnosis, focusing on unmet supportive care needs and quality of life, to inform the development of responsive survivorship care.

METHODS

A qualitative descriptive study using semi-structured interviews was conducted with 14 lymphoma survivors recruited from five hospitals across Ireland. Participants were purposively sampled using a maximum variation sampling strategy. Interviews were analysed using reflexive thematic analysis.

RESULTS

Three interconnected themes were generated: (1) navigating the complexity of a lymphoma diagnosis, (2) complex care coordination, and (3) the cost of cancer. Survivors described diagnostic pathways as uncertain and protracted, contributing to distress which shaped subsequent care experiences. Experiences of care coordination revealed fragmented services, difficulties managing physical health concerns, and the added complexity of living with impaired immune defence. The burden of cancer extended well beyond financial cost, encompassing disruptions to employment, travel, relationships, and family roles, alongside persistent psychosocial challenges. Collectively, survivors' accounts highlighted the interconnected and cumulative effects of lymphoma on quality of life, reflecting the broader personal, social, and emotional impact.

CONCLUSION

Lymphoma survivorship is characterised by complex, interrelated unmet needs that extend beyond clinical care to encompass psychosocial, practical, and system-level challenges. Diagnostic challenges, fragmented care coordination, and insufficient psychosocial support continue to shape quality of life in early survivorship. Addressing these issues requires coordinated, person-centred survivorship models that integrate supportive care and improve continuity across healthcare settings. Greater awareness of lymphoma as a cancer may help reduce isolation and better address ongoing needs.