Shaouli Shahid

'Nowhere to room … nobody told them': logistical and cultural impediments to Aboriginal peoples' participation in cancer treatment

BACKGROUND Cancer mortality among Indigenous Australians is higher compared to the non-Indigenous population and attributed to poor access to cancer detection, screening, treatment and support services. A large proportion of Indigenous Australians live in rural and remote areas which makes access to cancer treatment services more challenging. Factors, such as transport, accommodation, poor socio-economic status and cultural appropriateness of services also negatively affect health service access and, in turn, lead to poor cancer outcomes. DESIGN, SETTING AND PARTICIPANTS Qualitative research with 30 in-depth interviews was conducted with Aboriginal people affected by cancer from across WA, using a variety of recruitment approaches. RESULTS The infrastructure around the whole-of-treatment experience affected the decision-making and experiences of Aboriginal patients, particularly affecting rural residents. Issues raised included transport and accommodation problems, travel and service expenses, displacement from family, concerns about the hospital environment and lack of appropriate support persons. These factors are compounded by a range of disadvantages already experienced by Aboriginal Australians and are vital factors affecting treatment decision-making and access. CONCLUSION To improve cancer outcomes for Aboriginal people, logistical, infrastructure and cultural safety issues must be addressed. One way of ensuring this could be by dedicated support to better coordinate cancer diagnostic and treatment services with primary healthcare services.

Identifying barriers and improving communication between cancer service providers and Aboriginal patients and their families: the perspective of service providers

BackgroundAboriginal Australians experience poorer outcomes from cancer compared to the non-Aboriginal population. Some progress has been made in understanding Aboriginal Australians’ perspectives about cancer and their experiences with cancer services. However, little is known of cancer service providers’ (CSPs) thoughts and perceptions regarding Aboriginal patients and their experiences providing optimal cancer care to Aboriginal people. Communication between Aboriginal patients and non-Aboriginal health service providers has been identified as an impediment to good Aboriginal health outcomes. This paper reports on CSPs’ views about the factors impairing communication and offers practical strategies for promoting effective communication with Aboriginal patients in Western Australia (WA).MethodsA qualitative study involving in-depth interviews with 62 Aboriginal and non-Aboriginal CSPs from across WA was conducted between March 2006 - September 2007 and April-October 2011. CSPs were asked to share their experiences with Aboriginal patients and families experiencing cancer. Thematic analysis was carried out. Our analysis was primarily underpinned by the socio-ecological model, but concepts of Whiteness and privilege, and cultural security also guided our analysis.ResultsCSPs’ lack of knowledge about the needs of Aboriginal people with cancer and Aboriginal patients’ limited understanding of the Western medical system were identified as the two major impediments to communication. For effective patient–provider communication, attention is needed to language, communication style, knowledge and use of medical terminology and cross-cultural differences in the concept of time. Aboriginal marginalization within mainstream society and Aboriginal people’s distrust of the health system were also key issues impacting on communication. Potential solutions to effective Aboriginal patient-provider communication included recruiting more Aboriginal staff, providing appropriate cultural training for CSPs, cancer education for Aboriginal stakeholders, continuity of care, avoiding use of medical jargon, accommodating patients’ psychosocial and logistical needs, and in-service coordination.ConclusionIndividual CSPs identified challenges in cross-cultural communication and their willingness to accommodate culture-specific needs within the wider health care system including better communication with Aboriginal patients. However, participants’ comments indicated a lack of concerted effort at the system level to address Aboriginal disadvantage in cancer outcomes.

Telephone lifestyle coaching: Is it feasible as a behavioural change intervention for men?

This study assessed the feasibility of a telephone lifestyle coaching intervention for middle aged and older men in a service club setting and evaluated its impact on behavioural change in terms of BMI, physical activity, dietary habits, self-reported quality of life and stages of change. Forty participants from Rotary clubs in Western Australia participated in this pilot intervention. Findings showed significant improvements in lifestyle risk modification indicators. Participants were very satisfied with the interaction with their coaches and rated highly the telephone as a medium for coaching. Findings suggested that telephone coaching was a feasible means of delivering a lifestyle intervention in a ‘real-world’ setting for a hard to reach population group.

The role and influence of 'Champions' in a community-based lifestyle risk modification programme

This article describes the training and implementation of the Waist Disposal Challenge in service clubs in Western Australia in 2009–2010. Ninety-three Champions from 52 clubs were trained to deliver educational presentations to 1100 peers and facilitate a BMI competition among 764 peers. Champions reported significant improvements in their knowledge and confidence to motivate their peers to make changes to their diet and physical activity with 82% of participants completing the BMI competition and on average 58% experiencing and sustaining a BMI reduction for 12 months. It is evident that the Champions had influenced the uptake and success of the intervention.

Improving palliative care outcomes for Aboriginal Australians: service providers' perspectives

BackgroundAboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families.MethodsIn-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data.ResultsFifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers.ConclusionEarly referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team.

Factors influencing cancer treatment decision-making by indigenous peoples : a systematic review

We aim to systematically review studies that identify factors influencing cancer treatment decision‐making among indigenous peoples.

‘Connecting tracks’: exploring the roles of an Aboriginal women's cancer support network

Aboriginal Australians are at higher risk of developing certain types of cancer and, once diagnosed, they have poorer outcomes than their non-Aboriginal counterparts. Lower access to cancer screening programmes, deficiencies in treatment and cultural barriers contribute to poor outcomes. Additional logistical factors affecting those living in rural areas compound these barriers. Cancer support groups have positive effects on people affected by cancer; however, there is limited evidence on peer-support programmes for Aboriginal cancer patients in Australia. This paper explores the roles played by an Aboriginal womens cancer support network operating in a regional town in Western Australia. Data were collected through semi-structured interviews with 24 participants including Aboriginal and mainstream healthcare service providers, and network members and clients. Interviews were audiotaped and transcribed verbatim. Transcripts were subjected to inductive thematic analysis. Connecting and linking people and services was perceived as the main role of the network. This role had four distinct domains: (i) facilitating access to cancer services; (ii) fostering social interaction; (iii) providing a culturally safe space; and (iv) building relationships with other agencies. Other network roles included providing emotional and practical support, delivering health education and facilitating engagement in cancer screening initiatives. Despite the networks achievements, unresolved tensions around role definition negatively impacted on the working relationship between the network and mainstream service providers, and posed a threat to the networks sustainability. Different perspectives need to be acknowledged and addressed in order to build strong, effective partnerships between service providers and Aboriginal communities. Valuing and honouring the Aboriginal approaches and expertise, and adopting an intercultural approach are suggested as necessary to the way forward.

Addressing unresolved tensions to build effective partnerships: lessons from an Aboriginal cancer support network

BackgroundCancer is the second leading cause of death among Aboriginal and Torres Strait Islander people and their survival once diagnosed with cancer is lower compared to that of other Australians. This highlights the need to improve cancer-related health services for Indigenous Australians although how to achieve this remains unclear. Cancer support groups provide emotional and practical support, foster a sense of community and belonging and can improve health outcomes. However, despite evidence on their positive effects on people affected by cancer, there is scarce information on the function and effectiveness of Indigenous-specific cancer peer-support programs in Australia.Using qualitative data from an evaluation study, this paper explores different understandings of how a cancer support group should operate and the impact of unresolved tensions following the establishment of an Indigenous women cancer peer-support network in a regional town in Western Australia.MethodsData were collected through semi-structured interviews with 24 participants purposively selected among Indigenous and mainstream healthcare service providers, and group members and clients. Interviews were audiotaped and transcribed verbatim. Transcripts were subjected to inductive thematic analysis. NVivo was used to manage the data and assist in the data analysis. Rigour was enhanced through team member checking, coding validation and peer debriefing.ResultsFlexibility and a resistance to formal structuring were at the core of how the group operated. It was acknowledged that the network partly owned its success to its fluid approach; however, most mainstream healthcare service providers believed that a more structured approach was needed for the group to be sustainable. This was seen as acting in opposition to the flexible, organic approach considered necessary to adequately respond to Indigenous women’s needs. At the core of these tensions were opposing perspectives on the constructs of ‘structure’ and ‘flexibility’ between Indigenous and non-Indigenous participants.ConclusionsDespite the group’s achievements, unresolved tensions between opposing perspectives on how a support group should operate negatively impacted on the working relationship between the group and mainstream service providers, and posed a threat to the Network’s sustainability. Our results support the need to acknowledge and address different perspectives and world views in order to build strong, effective partnerships between service providers and Indigenous communities.

Making progress: The role of cancer councils in Australia in indigenous cancer control

BackgroundIndigenous Australians have poorer outcomes from cancer for a variety of reasons including poorer participation in screening programs, later diagnosis, higher rates of cancer with poor prognosis and poorer uptake and completion of treatment. Cancer prevention and support for people with cancer is part of the core business of the State and Territory Cancer Councils. To support sharing of lessons learned, this paper reports an environmental scan undertaken in 2010 in cancer councils (CCs) nationwide that aimed to support Indigenous cancer control.MethodsThe methods replicated the approach used in a 2006 environmental scan of Indigenous related activity in CCs. The Chief Executive Officer of each CC nominated individuals for interview. Interviews explored staffing, projects, programs and activities to progress cancer control issues for Indigenous Australians, through phone or face-to-face interviews. Reported initiatives were tabulated using predetermined categories of activity and summaries were returned to interviewees, the Aboriginal and Torres Strait Islander Subcommittee and Chief Executive Officers for verification.ResultsAll CCs participated and modest increases in activity had occurred in most states since 2006 through different means. Indigenous staff numbers were low and no Indigenous person had yet been employed in smaller CCs; no CC had an Indigenous Board member and efforts at capacity building were often directed outside of the organisation. Developing partnerships with Indigenous organisations were ongoing. Acknowledgement and specific mention of Indigenous people in policy was increasing. Momentum increased following the establishment of a national subcommittee which increased the profile of Indigenous issues and provided collegial and practical support for those committed to reducing Indigenous cancer disparities. Government funding of “Closing the Gap” and research in the larger CCs have been other avenues for increasing knowledge and activity in Indigenous cancer control.ConclusionsThis environmental scan measured progress, allowed sharing of information and provided critical assessment of progress across areas of importance for increasing Indigenous cancer control. Structured examination of policies, institutional support systems, programs and interventions is a useful means of highlighting opportunities for progress with minority groups relevant for many organisations. Progress has occurred with momentum likely to increase in the future and benefit from commitment to long-term monitoring and sharing of achievements.

Experiential learning to increase palliative care competence among the Indigenous workforce: an Australian experience

Objectives Improving Indigenous people’s access to palliative care requires a health workforce with appropriate knowledge and skills to respond to end-of-life (EOL) issues. The Indigenous component of the Program of Experience in the Palliative Approach (PEPA) includes opportunities for Indigenous health practitioners to develop skills in the palliative approach by undertaking a supervised clinical placement of up to 5 days within specialist palliative care services. This paper presents the evaluative findings of the components of an experiential learning programme and considers the broader implications for delivery of successful palliative care education programme for Indigenous people. Methods Semistructured interviews were conducted with PEPA staff and Indigenous PEPA participants. Interviews were recorded, transcribed and key themes identified. Results Participants reported that placements increased their confidence about engaging in conversations about EOL care and facilitated relationships and ongoing work collaboration with palliative care services. Management support was critical and placements undertaken in settings which had more experience caring for Indigenous people were preferred. Better engagement occurred where the programme included Indigenous staffing and leadership and where preplacement and postplacement preparation and mentoring were provided. Opportunities for programme improvement included building on existing postplacement and follow-up activities. Conclusions A culturally respectful experiential learning education programme has the potential to upskill Indigenous health practitioners in EOL care.