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Supportive Care in Cancer

, Volume 21, Issue 3, pp 749–756 | Cite as

Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers’ role perception and supportive care needs

  • Joanne ShawEmail author
  • James Harrison
  • Jane Young
  • Phyllis Butow
  • Charbel Sandroussi
  • David Martin
  • Michael Solomon
Original Article

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

Keywords

Caregiving Upper gastrointestinal cancer Family carers Interviews 

Notes

Acknowledgments

This project was supported by a Cancer Institute NSW competitive grant. The views expressed herein are those of the authors and are not necessarily those of the Cancer Institute NSW

Disclosures

None.

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Copyright information

© Springer-Verlag 2012

Authors and Affiliations

  • Joanne Shaw
    • 1
    • 2
    Email author
  • James Harrison
    • 1
    • 2
  • Jane Young
    • 1
    • 2
  • Phyllis Butow
    • 1
    • 4
  • Charbel Sandroussi
    • 5
  • David Martin
    • 6
  • Michael Solomon
    • 1
    • 3
    • 7
  1. 1.Surgical Outcomes Research Centre (SOuRCe), Sydney Local Health District and School of Public Health, Royal Prince Alfred HospitalUniversity of SydneySydneyAustralia
  2. 2.Sydney School of Public HealthUniversity of SydneySydneyAustralia
  3. 3.Discipline of SurgeryUniversity of SydneySydneyAustralia
  4. 4.Centre for Medical Psychology and Evidence-based Decision Making (CeMPED), School of PsychologyUniversity of SydneySydneyAustralia
  5. 5.Department of SurgeryRoyal Prince Alfred HospitalSydneyAustralia
  6. 6.Department of SurgeryConcord Repatriation General HospitalSydneyAustralia
  7. 7.Sydney Local Health DistrictSydneyAustralia

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