Providing Cancer and Palliative Care in Rural Areas: A Review of Patient and Carer Needs

Abstract

Of 72 papers identified, 71 were obtained and 20 were considered to meet the inclusion criteria. One paper could not be traced by library sources, due to incorrect referencing. Of the total of 20, 11 focused on needs of patients or carers; five were surveys of place of death or end-of-life care; and four were reviews of services in specific areas, which included reporting of patient and caregiver needs. The papers identified all originate from the developed world and there were no studies specifically relating to ethnic minorities. Papers Focusing on Patient and Carer Needs Eleven papers specifically examined needs of patients and carers (Table 1). Two of the four papers using survey methods arose from a demonstration project in Montana, U.s.A. (17,18). Sullivan et al. report on the responses to the final open-ended question "What have we not asked you about living with cancer that we should have asked?" (17). The 290 responses revealed a range of themes: coping, knowledge, support, interpersonal relationships, effe~t of treatment, life view, and a range of emotional concerns. The authors do not comment on whether these concerns differ from those of urban dwellers, but do suggest that health professionals consider them in the light of other work

Are rural and remote patients, families and caregivers needs in life‐limiting illness different from those of urban dwellers? A narrative synthesis of the evidence

“…This review expands on previous reviews by contrasting the key deficit of reduced availability and skills of primary care professionals with the advantages of rural resilience and community and patient and caregiver support. Unmet PEOLC need was related to lack of local services and reduced access to specialist services.…”

“…Previous reviews have not identified specific rural and remote PEOLC needs, but recognised the negative impact of geography and workforce. The positive influence of rurality on human attributes, such as resilience and community connectedness, which in turn influence health outcomes, has also been identified . Specific problems in symptom control and management of emotional issues have been reported in rural studies as well as difficulties in accessing specialist services, such as hospices and bereavement counselling and information .…”

“…As rural family structures change, more rural caregivers are younger and friends, rather than family members. Understanding how community networks mobilise and maintain support for patients and caregivers at the end‐of‐life (EOL) is crucial in planning PEOLC in the future . A deeper understanding of the impact of rural/urban differences in community EOL support networks on PEOLC need is also essential.…”

“…The positive influence of rurality on human attributes, such as resilience and community connectedness, which in turn influence health outcomes, has also been identified. [4][5][6] Specific problems in symptom control and management of emotional issues have been reported in rural studies as well as difficulties in accessing specialist services, such as hospices and bereavement counselling and information. 7 Direct comparative evidence from rural and urban data is necessary to pinpoint differences and/or similarities and understand rural PEOLC need and to inform service design.…”

Be known, be available, be mutual: a qualitative ethical analysis of social values in rural palliative care

“…This socially oriented context of care that invites going beyond 'the call of duty' can be associated with high personal cost [27] and can lead to a sense of isolation and burnout [28]. It has been noted that there is also a high degree of family caregiver burden associated with rural palliative care [29]. So, while rewarding, being present and available is not without risks.…”