Caring for someone with cancer in rural Australia

Abstract

Purpose To explore the experiences of people caring for someone with cancer, while living in rural Australia, and the impact of the cancer-caring role on their well-being. Method Eighteen adults in regional or remote (‘rural’) Australia who cared for a person with cancer took part in semi-structured telephone interviews. Participants were aged 32–77 years and mainly female (66%). Data were analysed using thematic analysis and an essentialist approach. Results Eight themes were identified: (1) travel is hard, but supports are available; (2) frustration with systems that do not demonstrate understanding of the rural context; (3) the importance of lay and peer support; (4) the impact of access to trusted, local health care services; (5) the importance of access to rurally relevant information (particularly on relevant services and what to expect); (6) living with uncertainty and balancing loss with hope; (7) reluctance to seek or accept psychological support; and (8) the gendered nature of care. Conclusion Rural cancer carers’ roles can be made easier by improving health systems and coordination to ease the burden of travel, providing information about available support and what to expect throughout cancer treatment that is relevant to the rural context, and increasing access to quality health, community, and support services, including palliative care, in rural areas. More training on the specific needs of rural patients and their carers is needed for urban health care professionals. Peer support groups may have particular value for cancer carers in rural settings, where there are known to be multiple barriers to accessing professional sources of psychosocial support.

Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

“…In all these studies, clear distinctions were made between the family carers' perspective and others' perspectives, making it possible to include only carers' experiences in our study. Six of the twelve studies included only bereaved carers [38-40, 43, 45, 46], while two included both family carers and beavered carers [47,48]. In four studies, close friends had been defined as family carers [38,42,44,46], while another four studies [40,43,44,46] did not specify family/next-of-kin relationships.…”

“…In addition, out-of-hours prescriptions became a problem due to the shortage of local doctors [41]. Due to long distances, health professionals were not able to respond quickly enough [39,43,45,48].…”

Changes in rural caregivers' health behaviors while supporting someone with cancer: A qualitative study

“…Barriers to accessing support for their own health and wellbeing may also need further investigation. Previous research among rural caregivers identified many who do not seek support for themselves while caring for someone with cancer 45 and reluctance to use professional emotional support due to the time required and potential discomfort 28 . It is not known how a decline in health behaviors while caring for someone with cancer affects caregivers' long‐term health outcomes, particularly where caregivers' support extends well beyond initial diagnosis and treatment phases.…”

“…In Australia, an estimated 28% of the population resides in a ‘rural’ area, 25 referring to anywhere outside of major cities, including inner and outer regional, remote, and very remote areas 26 . Compared to their urban counterparts, rural caregivers must navigate longer travel distances and associated costs for the patient to access treatment 27–29 . Many rural caregivers also experience disruptions to employment and financial stress while caring for someone with cancer 30,31 .…”

Factors associated with cancer survival disparities among Aboriginal and Torres Strait Islander peoples compared with other Australians: A systematic review

“…Aboriginal and Torres Strait Islander peoples experience disadvantage across a range of socioeconomic and health indicators, have lower average life expectancy, and are more likely to live in more remote areas than other Australians ( 2 ), with Australian oncology services typically concentrated in major cities ( 12 ). There is also a substantial travel burden for cancer patients in more remote areas to attend oncology care in cities ( 13 , 14 ). There is evidence that Aboriginal and Torres Strait Islander peoples face additional logistical, systemic, health system and social barriers, including perceptions about cancer and its treatment and a lack of culturally appropriate care ( 2 , 15 – 18 ) that likely contribute to disparate health outcomes.…”