ORIGINAL ARTICLE Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers’ role perception and supportive care needs Joanne Shaw & James Harrison & Jane Young & Phyllis Butow & Charbel Sandroussi & David Martin & Michael Solomon Received: 26 February 2012 / Accepted: 13 August 2012 # Springer-Verlag 2012 Abstract Background Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experi- encing psychological distress and carer burden. The early post- operative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investi- gate how family caregivers perceive their role during this time. Methods Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured tele- phone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative ap- proach. Sampling was discontinued when information redun- dancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview. Results Family caregivers reported significant information and support needs. Family caregiver distress was exacerbat- ed by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility. Conclusions This study provides new insight into the sup- portive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer Keywords Caregiving . Upper gastrointestinal cancer . Family carers . Interviews Background Patients with upper gastrointestinal (GI) cancers (oesophagus, stomach, pancreas, biliary system and liver) have a poor prognosis with 5-year survivals amongst the lowest for any J. Shaw (*) : J. Harrison : J. Young : P. Butow : M. Solomon Surgical Outcomes Research Centre (SOuRCe), Sydney Local Health District and School of Public Health, Royal Prince Alfred Hospital, University of Sydney, PO Box M157, Missenden Road Camperdown, 2050, Sydney, NSW, Australia e-mail: joanne.shaw@sydney.edu.au J. Shaw : J. Harrison : J. Young Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia M. Solomon Discipline of Surgery, University of Sydney, Sydney, NSW, Australia P. Butow Centre for Medical Psychology and Evidence-based Decision Making (CeMPED), School of Psychology, University of Sydney, Sydney, NSW, Australia C. Sandroussi Department of Surgery, Royal Prince Alfred Hospital, Sydney, NSW, Australia D. Martin Department of Surgery, Concord Repatriation General Hospital, Sydney, NSW, Australia M. Solomon Sydney Local Health District, Sydney, NSW, Australia Support Care Cancer DOI 10.1007/s00520-012-1575-8