Barriers to participation of Aboriginal people in cancer care: communication in the hospital setting

Rates of mortality from cancer are markedly higher for Indigenous compared with non-Indigenous Australians,1-4 even after adjustment for stage at diagnosis, cancer treatment and comorbidities.5 Treatment disparity accounts for most of the survival deficit.6

Effective doctor–patient communication, particularly crucial in cancer care,7 positively correlates with the development of a strong therapeutic bond, adherence to therapy, understanding of treatment risks, reduced patient anxiety, patient satisfaction and reduced risk of medical mishaps or malpractice claims.8-10 Miscommunication can have adverse consequences, including misdiagnosis, procedures being carried out without informed consent, poor adherence to treatment and persistent health-damaging behaviours.11

Communication can be adversely affected by people’s socioeconomic, historical and cultural backgrounds. Culture is a complex phenomenon encompassing knowledge, folklore, language, rules, rituals, habits, lifestyles, attitudes, beliefs and customs that link and give a common identity to a particular group of people at a specific point in time,12 and doctor–patient communication can occur in a context where there is interplay between cultures. Concerns about communication between Indigenous patients and health professionals have been previously identified.13-15 Physicians have been found to deliver less information and less supportive talk to patients of black and Hispanic background and of lower socioeconomic class, and to be less proficient in their clinical performance with such patients.16 A study with Native Canadians identified history, trust and concept of time as influencing communication between them and physicians,15 while physicians have documented the significant role of non-verbal communication in interaction with patients of native and First Nations (original inhabitants of Canada and their descendants) ethnicity.17 If unaccustomed to these non-verbal signals, clinicians could easily misinterpret patient behaviour.

In Australia, few studies have looked at the extent, nature and consequences of (mis)communication between Aboriginal patients and service providers.11,13 A 2002 study identified sources of miscommunication such as lack of patient control over language, timing, content and circumstances of interactions, differing modes of discourse, dominance of biomedical knowledge, cultural and linguistic distance, and lack of resources including trained interpreters.13 In this research, we explored Aboriginal people’s views and experiences of cancer-related services in WA and their impact on decisions about uptake of cancer treatment.

Our study was approved by four Human Research Ethics Committees. An Aboriginal Reference Group established through invitation was consulted throughout the study period, providing input and feedback from and to Aboriginal stakeholders.

We conducted indepth interviews between 1 March 2006 and 30 September 2007 with urban and regional Aboriginal adult patients with cancer and family members who had been closely involved in the journey of the Aboriginal person with cancer or who had died from cancer. Purposive recruitment occurred through the networks of the researchers and reference group and through health professionals in primary or tertiary care to ensure inclusion of participants from different regions, sex and cancer types. Limited snowball recruitment (whereby existing participants recruit future participants from among their acquaintances) occurred in rural settings.

All participants spoke English and gave written informed consent. In semi-structured interviews, participants were asked to share the story of their journey with cancer or their journey with a family member with cancer, and to recommend ways of addressing any problems they faced. Difficulties encountered in accessing cancer treatment were explored.

In light of Aboriginal Australians’ previous negative experiences with research,18 relationship building was prioritised and interviews were conducted in a setting of the participants’ choice. On rural visits, a respected appropriate local person nominated by the health service introduced the interviewer, and often remained throughout the interview.

Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. The interviewer maintained a reflective journal throughout. NVivo 7 (QSR International, Melbourne, Vic) software was used to assist data management and analysis. Participants’ narratives were divided into broad categories to allow identification of key themes. Feedback sessions with available participants clarified whether emerging themes were an accurate reflection of participants’ experiences. A social-ecological and holistic approach was considered for interpreting data.19,20 Social-ecological epistemology considers the interrelatedness of several social elements21 and looks at effects and relationships at multiple levels.19,22 The holistic approach considers overall wellbeing in terms of physical, mental, emotional and spiritual aspects of healing and wellness.20

Thirty interviews were conducted with 14 Aboriginal patients with cancer and 16 family members. Demographic characteristics of the 30 interviewees are shown in Box 1.

Thematic analysis identified many concerns relating to hospital treatment. Communication issues with service providers were a salient concern, with subthemes of contextual barriers, impediments to communication and loss of trust (Box 2). These themes were often coded concurrently, highlighting the connection between them. These results align with the social-ecological model, highlighting the complex interplay between factors at different levels (individual, family, community, societal) and their impact on patient–provider communication. Although many of the issues identified are applicable to non-Aboriginal people when accessing treatment, their severity and impact on Aboriginal people is compounded by an aggregation of factors including their collective historical experience, cultural background and preferences, and poorer socioeconomic circumstances.

Our study findings indicated that the tools needed to facilitate the entry of Aboriginal people into the medical system and to manage effective treatment are culturally sensitive and empathetic personal contact, acknowledgement and respect for Aboriginal family structures, culture and life circumstances, and the importance of land and community. Although Aboriginal peoples’ experiences with cancer are not unique, they are overlaid by a collective experience of systemic racism within a public health care system.27 There was considerable commonality in the reports of participants, irrespective of whether they were patients or family members, and despite variation in their demographic backgrounds.

Effective communication between patients and health care providers is essential for quality health care delivery,16 and is inevitably affected by the culture(s) of those involved.12 The dissimilarities between Aboriginal beliefs and cultural considerations and the approach of the Western medical system help explain Aboriginal people’s underuse of health services.28,29 Typically, health professionals focus on educating Aboriginal people to increase their biomedical understanding of disease processes. However, if health service providers are to be really effective as “healers”, there are strong arguments for their making efforts to understand a patient’s culture and social circumstances.

Sensitivity in patient care requires attention to the patient as a person, and this requires focus on patient–provider communication, understanding and relationship. Minorities around the world report less involvement in medical decisions, less partnership, and lower levels of satisfaction with their care providers.15,16,30

Limitations of our study include the under-representation of male participants. Possible reasons for this include: the main interviewer being female; women predominating as health care professionals and carers; there being a differential cancer survival according to sex; and higher use of health services by women.31,32 The larger number of selected quotations from family members suggests that the family members were able to frame the experience of Aboriginal people better, and were more coherent and succinct in reporting.

The higher mortality rate from cancer among Aboriginal Australians reflects the fact that their cancer diagnoses tend to be made later, and their unwillingness to participate in mainstream cancer services. The focus for solving these problems must shift from considering Aboriginal people responsible (“why don’t they come”) to hospitals and staff accepting a responsibility for ensuring optimal care (including psychosocial care and cultural safety) for Aboriginal patients. The experience reported by Aboriginal participants shows that there is a need for attention at a systems level, and not at the level of the individual patient–provider interaction, although the importance of both and the nexus between them is evident. Health care providers who do care have a vital role in creating system reform both inside and outside the hospital, so that the racism, the alienating environment, and the lack of culturally appropriate support, information and understanding reported in this study are addressed. Advocating for more Aboriginal health staff is an important part, and will help overcome current language and communication barriers.

Participants wanted an ongoing, trusting relationship with a provider who genuinely cared about them, but Aboriginal people often felt their wishes were not heeded and that their trust was betrayed. Good care must acknowledge that people care about relational issues such as being treated with dignity and respect and being heard.33 Trust is crucial for patients in accepting difficult diagnoses, following complex treatment plans,34 and for being satisfied with their medical care and having positive clinical outcomes.35 The system appears to focus too much on clinical competence and too little on other psychosocial characteristics that encourage patient trust — equality, benevolence, integrity, respect, and honesty.36 If treatment outcomes are to improve, the health system must become responsive to Aboriginal needs and heed their suggestions (Box 6). Participation and representation of Aboriginal people at a decision-making level in hospitals will help ensure these issues are addressed; such inclusion will, in itself, be an important symbol of progress. Increasing Aboriginal health literacy requires access to appropriate information and dedicated employment of Aboriginal staff.24

Much of this has been stated many times before, with little action or provision of resources to match the recommendations and promises. Inevitably, change has opportunity costs, but hospital resources need to be devoted to cultural safety in health care for Aboriginal people. While not challenging the value of randomised controlled trials of oncology treatments, improving (expensive) treatments for some should not be prioritised over the importance of reducing profound health disparities. Change also requires health service staff to undertake greater outreach to Aboriginal communities to build understanding and enhance relationships and support within communities.

Culturally appropriate, integrated and sustainable care for Aboriginal people with cancer requires a coordinated person-centred approach, involving patients, family members, Aboriginal health staff, and clinicians. Relationships developed through such networks are likely to help Aboriginal patients cope with the hospital settings, and ultimately enhance their confidence in communicating with the doctors. Many of the issues raised here are again identified in current national review processes, emphasising that the needs of Aboriginal people are indicative of the need for a broader health care reform process.37

2 Barriers to effective communication between Aboriginal patients and health service providers in the hospital setting