Understanding rural caregivers’ experiences of cancer care when accessing metropolitan cancer services: a qualitative study

Abstract

ObjectiveTo explore the experiences of cancer caregivers who live in rural Australia and travel to a metropolitan cancer health service to access cancer treatment.DesignA qualitative study using semistructured, audio-recorded interviews conducted between December 2017 and July 2018 with caregivers and social workers. Thematic analysis using interpretative descriptive techniques performed on textual interview data within a critical realist paradigm to develop understanding of rural caregivers’ lived experiences.SettingParticipants were from rural areas attending a metropolitan cancer centre in Australia and social workers.Participants21 caregivers (16 female) of people with cancer living in rural Australia within a minimum distance of 100 km from the metropolitan cancer centre where they access treatment, and five social workers employed at a metropolitan cancer service with experience of working with rural patients and caregivers.ResultsThematic analysis developed two overarching themes: theme 1:caregiving in the rural settingdescribes the unique circumstance in which caregiving for a person with cancer takes place in the rural setting at considerable distance from the cancer service where the person receives treatment. This is explored in three categories: ‘Rural community and culture’, ‘Life adjustments’ and ‘Available supports’. Theme 2:accessing metropolitan cancer servicescaptures the multiplicity of tasks and challenges involved in organising and coordinating the journey to access cancer treatment in a metropolitan hospital, which is presented in the following categories: ‘Travel’, ‘Accommodation’ and ‘Health system navigation’.ConclusionsCaregivers who live in rural areas face significant challenges when confronting geographic isolation between their rural home environment and the metropolitan setting, where the patient accessed cancer treatment. There is a need for healthcare services to identify this group to develop feasible and sustainable ways to provide interventions that have the best chance of assisting rural caregivers in supporting the patient while maintaining their own health and well-being.

The psychosocial experiences and supportive care preferences of organ transplant recipients and their carers who live in regional Australia

“…Further, the belief that carers must remain optimistic and maintain a constant presence at the transplant hospital (away from home) can result in them neglecting to take care of themselves. The rural caregiving strain has been documented in the cancer field, 30 which highlights the problematic lack of practical at‐home assistance, uptake of patients’ farm work, loss of family income and the burden of long‐distance travel to appointments in the city. There is a need for rurally accessible carer‐specific psychosocial support tools.…”

Effective integration of caregivers and families as part of the care team for people with cancer

“…They can be responsible for care coordination 3 including attendance at and travel to appointments, which can be a significant burden for families in rural or regional areas. 11 Caregivers have a significant role in communication with the broader family. They also often assume responsibility of all household tasks and related stressors, including financial burdens.…”

Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers

“…Secondly, people with cancer who are from ethnic minority backgrounds who rely more heavily on their caregivers for advocacy and health system navigation [ 14 , 15 ]. Finally, people with cancer living in regional or rural areas in which they are separated from specialist centres or services by geographical distance and therefore who rely more heavily on their informal caregivers to monitor symptoms, provide supportive and symptom-related care, and assist in travel to metropolitan treatment centres than people with cancer who reside in cities [ 16 , 17 ].…”