What are the sources of distress in a range of cancer caregivers? A qualitative study

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.