What We Need to Know About Cancer Immunotherapy: A Qualitative Study of Patient, Family and Healthcare Professional...

This study explored the educational needs, preferences and preferred formats of patients with cancer, their caregivers, and healthcare professionals regarding immune checkpoint inhibitor (ICI) therapy with attention to varying levels of health literacy.

A qualitative hermeneutic design was applied. Semi-structured interviews were conducted with patients receiving ICI therapy and their caregivers: six dyadic and eight individual interviews. A focus group with healthcare professionals complemented the interview data. Data collection took place from September to December 2024. Data were analysed collectively using systematic text condensation.

Three themes were identified: (1) factors affecting perception and understanding of information, (2) core educational needs for understanding treatment with immunotherapy, and (3) preferences for educational material. Caregivers supported patients in understanding treatment-related information. Emotional distress and limited health literacy reduced the capacity to absorb and understand information. Participants emphasised preferences for simple, repeated information delivered through multicomponent educational materials combining written, visual, and audio formats.

Caregiver support, health literacy, and emotional state influence how patients and caregiver perceive and understand information on ICI therapy. A multicomponent educational model-comprising information pathways with oncologists and nurses and using visual tools-may address diverse emotional needs and varying levels of health literacy and caregiver support.

Nurses participate in delivering education for patients receiving ICI therapy and their caregivers. Integrating written, visual, and audio materials into existing information pathways may support diverse comprehension levels. Educational efforts should actively involve caregivers and prioritise simplicity and repeated access to information.