In this study, information about community and allied health service use by Indigenous people diagnosed with cancer was collected. Overall, our findings indicate that in Queensland, Indigenous cancer patients accessed multiple community and allied health services. To our knowledge there is no study amongst non-Indigenous people with cancer (all cancers) that have investigated this issue. However, some studies have been conducted in specific cancer types. In comparing these studies, participants in our study utilised more community support services than that reported by gynaecological cancer survivors in Queensland (54%) [20]. The individual use of services in this study compared to the gynaecological cancer survivors study participants reported a higher use of information booklets (37%), similar internet use (23%) and lower use of telephone helplines (20%) [20]. Additionally, similar to the present study, Chisholm et al. [21] found that breast cancer patients treated in public hospitals utilized 50% or more of physiotherapist and social worker services. The higher use of community and allied health services reported by our participants may be explained by the strong association of service use and referral from a health care provider [20].
In general, no significant differences on service use were found by cancer type, age group, socio-economic status and place of residence. Females were more frequent users of ‘Information Sources’, and patients with higher levels of education were more frequent users of ‘Information resources’ and ‘Support Services’, whilst those with lower educational levels used more ‘Community Services’ more often.
Whilst not statistically significant a greater proportion of patients with breast and blood related cancers reported use of a wider range of health services than other cancer groups. Regarding breast cancer patients, the use of services might reflect a much greater volume of information available on breast cancer and a heightened awareness about the disease in the community. Additionally, there is perception that screening and treatment procedures for breast cancer are less invasive than those for other cancers e.g. cervical cancer. Research has shown that women especially in remote areas feel constrained to seek a Pap smear procedure. The reasons for this are many and include such issues as the patient may know the personnel who carry out the procedure (lack of privacy), [22] or the procedure is not clearly understood, or is carried out by a male professional. Patients with blood related cancer usually have rigorous monitoring of cell counts, blood transfusions, bone marrow transplantation, and control of infections that implies on constant medical appointments and hospital visits. These factors are likely to contribute to a higher proportion of these patients accessing different health services.
The demographic characteristics of the study population was similar to a previous study on cancer amongst Indigenous Australians [23] where Indigenous cancer cases were more likely to be women and under 59 years of age. However, the pattern of cancer types among the study sample differed from the patterns of cancers among Indigenous Queenslanders. In this study, breast and blood related were the most frequent cancer types, while the most commonly occurring cancers reported for Indigenous Queenslanders are lung and prostate among men, and breast and lung among women [2]. Nearly half of the patients included here were younger than 40 years of age at diagnosis; this accords with other studies reporting that cancer affects Indigenous Australian at younger ages than their non-Australian counterparts [5, 23].
The Indigenous Health Liaison Officers (IHLOs) were reported as the most frequent service used. This is probably an indication of the availability of such services in the community and/or hospitals where these patients received treatment. Also, our finding reinforce the results of previous studies [16, 24] that demonstrated Indigenous cancer patients have specific perceptions about quality of care and the cultural appropriateness of health services. Indigenous cancer patients have strong family and kin links that should be taken into account by care providers. The communication of health professionals and patients and decision making process appear to play a key role on the engagement of patients in the treatment [25]. There is increasing evidence indicating that the mainstream health delivery model is not the most culturally sensitive and comprehensive model for Indigenous patients in general (not specifically for cancer patients). The evidence suggests that collective community-governed health service delivery is a more appropriate model to overcome Indigenous health disadvantages [26]. Some evidence is also emerging overseas of community-based interventions to reduce cancer disparities among Alaska natives and American Indians [27].
It is important to highlight that less than one third of cancer patients in this study had completed high school or equivalent and that the participants level of Education was the most significant factor affecting health services utilization [16, 24]. It is imperative that this be considered when planning cancer support services, and developing information sheets/brochures about cancer, cancer treatment and support for this group.
These principal findings should be considered in the context of the methodological features of the study. Strengths included the use of face-to-face interviews with trained Indigenous and non-Indigenous interviewers, use of a standardised data collection sheet, and the inclusion of multiple hospitals recruiting patients from a large geographic area (including patients who live in remote and very remote areas). A response rate of 57.7% of Indigenous cancer patients is a limitation of the study. Selection bias in our study may have resulted in participants being of higher socio-economic status than the general Indigenous population, and therefore more likely to access services compared to those not included in the study. For example, in the study sample about 30% of the participants had completed high school while in the 2006 census 23% of Australian Indigenous population had completed high school or equivalent [28]. Given the information about health service use was collected retrospectively, recall bias may potentially have affected the results. Nevertheless, there is no reason to believe that there was differential among the different groups e.g. types of cancer, age groups. In Australia, ethnicity is defined by self-assessment [29] and therefore not all Indigenous people with cancer may have been identified. There is some evidence that, occasionally, an Indigenous patient might be reluctant to identify themselves as such, or that hospital staff might not ask or assume their Indigenous status [30]. However, we believe steps taken in study design (e.g. face-to-face contact to confirm Indigenous status) minimized misclassification.
In Queensland, more than half of the Indigenous population live in outer regional, remote or very remote areas [13]. When diagnosed with cancer, they have to travel to a large city (e.g. Brisbane, Townsville) for their treatment. Indeed, over half the patients indicated they were away from their usual place of residence at the time of the study. In this regard, there are a few limitations in this study. Firstly, there is no differentiation between the use of services ‘at home’ or ‘whilst away from home for treatment or follow up care for their cancer’ and secondly, the questionnaire used a preset list of health services/workers. It is possible that our reported high use of services was mostly due to services accessed ‘whilst at a tertiary centre’ and not services available at their place of residence. Moreover, health services/workers not listed (e.g. the general practitioner) may be were less likely to be recalled.
However, often access is inhibited not only due to geographical distance but also cultural factors, and thus this can be experienced in an urban, rural or remote setting [31].
We have no information about health service use among cancer patients who did not receive any treatment. We know from previous reports, that Indigenous patients have lower treatment participant rates than their non-Indigenous counterparts. In a Queensland study, Indigenous cancer patients were 24% less likely to have surgery, 20% less likely to have chemotherapy and 9% less likely to receive radiotherapy [32]. In addition, for a large number of patients included in the study, the Indigenous Liaison Officer was the person referring patients to the study, so most patients included would have had access to an Indigenous Health Worker/Service. Lastly, given the challenges in recruiting Indigenous people with cancer in Queensland, even though in this context it may be considered a ‘large study’, nevertheless it has limited power to detect small differences between the groups with certainty; consequently, there may have been differences that the study did not detect. This is particularly relevant when we consider that remoteness did not affect utilisation in this study, it’s likely that in a study with more power we would detect these differences.
