title: Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers' role perception and supportive care needs.
abstract: BACKGROUND
  Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative 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) investigate how family caregivers perceive their role during this time.
  
  
  METHODS
  Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy 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 exacerbated 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 supportive 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.
authors.affiliation: Surgical Outcomes Research Centre, Sydney Local Health District and School of Public Health, Royal Prince Alfred Hospital, University of Sydney, Sydney, NSW, Australia. joanne.shaw@sydney.edu.au
authors.forename: Joanne
authors.initials: J
authors.lastname: Shaw
authors.forename: James
authors.initials: J
authors.lastname: Harrison
authors.forename: Jane
authors.initials: J
authors.lastname: Young
authors.forename: Phyllis
authors.initials: P
authors.lastname: Butow
authors.forename: Charbel
authors.initials: C
authors.lastname: Sandroussi
authors.forename: David
authors.initials: D
authors.lastname: Martin
authors.forename: Michael
authors.initials: M
authors.lastname: Solomon
mesh_terms: D000223:Adaptation, Psychological; D017028:Caregivers / Q000523:psychology*; D003625:Data Collection; D005260:Female; D005770:Gastrointestinal Neoplasms / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D011379:Prognosis; D012944:Social Support; D013315:Stress, Psychological / Q000209:etiology*; D013997:Time Factors