Jo Taylor1,2,3, Elizabeth Fradgley4,5,6,7, Tara Clinton-McHarg5,6,8, Emma Byrnes4,9, Christine Paul4,5,6,10. 1. School of Medicine and Public Health, University of Newcastle, Level 4 West, HMRI Building, Callaghan, NSW, 2308, Australia. jtaylor1@newcastle.edu.au. 2. Priority Research Centre for Health Behaviour, University of Newcastle, Callaghan, Australia. jtaylor1@newcastle.edu.au. 3. Priority Research Centre for Cancer Research Innovation and Translation, University of Newcastle, Callaghan, Australia. jtaylor1@newcastle.edu.au. 4. School of Medicine and Public Health, University of Newcastle, Level 4 West, HMRI Building, Callaghan, NSW, 2308, Australia. 5. Priority Research Centre for Health Behaviour, University of Newcastle, Callaghan, Australia. 6. Priority Research Centre for Cancer Research Innovation and Translation, University of Newcastle, Callaghan, Australia. 7. Cancer Institute New South Wales, Eveleigh, Australia. 8. School of Psychology, University of Newcastle, Callaghan, Australia. 9. Priority Research Centre for Generational Health and Aging, University of Newcastle, Callaghan, Australia. 10. Hunter Research Cancer Alliance, HMRI Building, New Lambton Heights, Australia.
Abstract
PURPOSE: Caring for a person diagnosed with cancer is associated with elevated distress that may impact on caregiver health and patient outcomes. However, caregivers' distress is relatively under-researched. This Australian study explored a range of caregivers' reported sources of distress. METHODS: The grounded theory approach informed semi-structured interviews that were conducted with a purposive and broad range sample of distressed caregivers identified through the 'Structured Triage And Referral by Telephone' (START) trial. A grounded theory framework was used to generate themes with data analysed by two independent coders using the NVivo software. RESULTS: Caregivers (n = 14) were aged from 25 to 80 years, including two bereaved caregivers. The relationships of the caregivers to the patients were as follows: partner (n = 8), parent (n = 1), child (n = 3), sibling (n = 1), and friend (n = 1). Six major themes emerged in relation to sources of distress: (1) a lack of sufficient and timely information; (2) uncertainty; (3) the role and duties of caregiving; (4) lack of family-centred services; (5) practical challenges; and (6) impact of distress. CONCLUSION: Caregivers face a number of specific challenges beyond those experienced by patients. It is essential to ensure that caregivers are actively well-informed and well-supported alongside the person who is diagnosed with cancer.
PURPOSE: Caring for a person diagnosed with cancer is associated with elevated distress that may impact on caregiver health and patient outcomes. However, caregivers' distress is relatively under-researched. This Australian study explored a range of caregivers' reported sources of distress. METHODS: The grounded theory approach informed semi-structured interviews that were conducted with a purposive and broad range sample of distressed caregivers identified through the 'Structured Triage And Referral by Telephone' (START) trial. A grounded theory framework was used to generate themes with data analysed by two independent coders using the NVivo software. RESULTS: Caregivers (n = 14) were aged from 25 to 80 years, including two bereaved caregivers. The relationships of the caregivers to the patients were as follows: partner (n = 8), parent (n = 1), child (n = 3), sibling (n = 1), and friend (n = 1). Six major themes emerged in relation to sources of distress: (1) a lack of sufficient and timely information; (2) uncertainty; (3) the role and duties of caregiving; (4) lack of family-centred services; (5) practical challenges; and (6) impact of distress. CONCLUSION: Caregivers face a number of specific challenges beyond those experienced by patients. It is essential to ensure that caregivers are actively well-informed and well-supported alongside the person who is diagnosed with cancer.
Authors: Laurel L Northouse; Maria C Katapodi; Lixin Song; Lingling Zhang; Darlene W Mood Journal: CA Cancer J Clin Date: 2010-08-13 Impact factor: 508.702