'Nowhere to Room . . . Nobody Told Them': Logistical and Cultural Impediments to Aboriginal Peoples' Participation in Cancer Treatment
Shahid, Shaouli, Finn, Lizzie, Bessarab, Dawn, Thompson, Sandra C., Australian Health Review
Death rates for IndigenousA Australians are three times higher than for non-Indigenous Australians,1,2 with markedly higher cancer mortality rates.3-6 Poorer Indigenous cancer outcomes are occurring despite advances in detection and treatment techniques and overall improvements in cancer outcomes in Australia.7 Indigenous Australians are less likely to access cancer screening; are diagnosed at a more advanced stage of cancer; have poorer continuity of care; lower compliance with treatment; and lower five-year survival rates.4,8,9 This situation clearly warrants consideration and appropriate action by both primary healthcare services and cancer treatment services.
Health service access is an important determinant of health outcomes for both preventive care and treatment.10,11 Access to healthcare is particularly difficult in geographically extensive territories like Australia1 where many people need to travel large distances to health centres and services.12,13 Poorer access to cancer detection, screening, treatment and support services for rural and remote people as compared to urban dwellers, is a primary reason for a reduced likelihood of cancer survival.2,14 Thus, poorer cancer outcomes for Indigenous Australians are compounded by the rural and remote residency of over half of Australia's Indigenous people.2,15
This paper utilises information from research undertaken to investigate the experiences and barriers of Aboriginal people in accessing cancer services and treatment inWA.Anexplicit aim of the research was to explore differences in experiences for Aboriginal people based upon their residence in urban, rural or remote settings. Basic infrastructure and logistical problems in accessing hospital-based treatment along with communication issues16 and lack of culturally appropriate service delivery mechanisms were frequently mentioned by the participants. Inevitably, additional problems were reported by those who travelled from rural areas to receive cancer assessment and treatment. This paper focusses on what could be considered as infrastructure necessities for Aboriginal patients on their cancer journey including transport, accommodation, preparation for hospital-based cancer treatment, service affordability and support services. The study outcomes indicated that reconfiguration of cancer care, with a greater emphasis on support in local communities and better coordination with primary healthcare services is necessary to improve Aboriginal patient outcomes.
Ethics approval was obtained from the Human Research Ethics Committee of four organisations including the Western Australian Aboriginal Health Information and Ethics Committee. An Aboriginal Reference Group (ARG) consisting of Aboriginal health professionals was established, involved and consulted throughout the study period.
Data collection and analysis
The research design ensured a culturally sensitive research approach by involving and supporting Indigenous people.17 Descriptive qualitative research methods were utilised. Prior to commencement of the interview, steps were taken to ensure an introduction from someone trusted and known by the participant, to build rapport and develop a relationship. Participants were encouraged to tell their story in describing their cancer journey. This mode of data gathering known as 'yarning' is an acceptable means of collecting data, aligning with Indigenous cultural oral traditions offering Indigenous people a voice by applying a nonthreatening research paradigm.18
Thirty in-depth interviews were conducted between March 2006 and September 2007 in Perth (urban) (n = 11) and in one rural (9) and two remote areas (7) of WA. Several patients from other areas of WA who came to Perth for treatment around this time were also interviewed (n = 3). Aboriginal interviewees were adult cancer patients, survivors (14) and family members (16) of people with cancer or people who had died from cancer. …