Navigating the pancreatic cancer journey: exploring the lived experiences and support needs of family caregivers

Objectives/ Purpose<br/><br/>Family caregivers to people with pancreatic cancer experience high levels of unmet need, poorer quality life and increased risk of various psychiatric disorders compared to caregivers of other cancers. Family caregivers frequently report feeling unprepared for their role and a lack of adequate support. This qualitative study aims to explore the lived experiences of family caregivers across the disease trajectory, focusing on their psychosocial adjustment and perceptions of support.<br/><br/>Sample and Setting<br/><br/>Participants are family caregivers of people living with pancreatic cancer at any stage of the disease trajectory in Northern Ireland. Recruitment is ongoing through social media and local charity networks, with a target sample size of 12-15, guided by information power. To date, six participants have completed interviews, including four spouses, and two adult children. Participants are supporting people with pancreatic cancer at various disease stages including palliative care, living with treatable but not curable cancer and living well after cancer.<br/><br/>Procedure<br/><br/>Semi-structured interviews are being conducted to explore family caregivers’ psychosocial and emotional experiences, and coping strategies. Interviews also explore the perceived availability, utilisation, and impact of support services. All interviews are audio-recorded, transcribed verbatim, and analysed using reflexive thematic analysis.<br/><br/>Results<br/><br/>Preliminary analysis suggests family caregivers feel excluded from critical conversations, particularly around diagnosis and prognosis. They also experience feelings of uncertainty and isolation, especially during treatment breaks or discontinuation. Findings also indicate opportunities for connection and shared understanding, such as those provided by local charity communities, may offer valuable support. <br/><br/>Conclusion<br/><br/>Early findings highlight communication and support gaps for family caregivers of people with pancreatic cancer, particularly during transitions in care. Enhanced signposting to peer and community support may help to reduce isolation and promote psychosocial wellbeing. Further research will increase understanding and inform the development of interventions to better support this population.