Partnering with support persons and clinicians to improve the health care experiences of patients with cirrhosis.

AIM: To explore the care experiences of Aboriginal and Torres Strait Islander Australians diagnosed with cirrhosis with a focus on support needed. BACKGROUND: Cirrhosis disproportionately affects Indigenous Australians, and liver diseases contribute to the mortality gap between Indigenous and other Australian adults. DESIGN: A qualitative study. METHODS: Using yarning methods, Indigenous patients (n = 13) and support persons (n = 3) were interviewed by an Aboriginal researcher during April-July, 2020. Thematic analysis was used to identify common themes using an inductive approach. RESULTS: Six themes emerged. (1) Experience of diagnosis. This theme included stories of delays in the system, self-awareness of signs and symptoms and relief of being diagnosed. (2) 'Shame, shame, shame'. Experiences of prejudices and discrimination from health professionals, the lack of understanding of cirrhosis among health professionals, and stories about alcohol cessation and counselling around alcohol cessation. (3) Health literacy. Participants' understanding of cirrhosis was variable. While the importance of knowledge was recognised, 'what works for someone might not work for others'. Several patients partnered with their support persons and clinicians to bridge the health literacy gap. (4) Sources of support included family and friends, transport facilities, health professionals and peers. (5) Positive and negative aspects of communication and patient consultation were discussed. (6) Psychosocial counselling to 'look after the caring side'. The need for more mental health care services was raised. CONCLUSION: Barriers related to poor health literacy, stigma and lack of practical and emotional support, and issues with communication and patient consultation, may lead to inequitable access to cirrhosis care and treatment for Indigenous Australians. RELEVANCE TO CLINICAL PRACTICE: Gaining knowledge of the experiences of Indigenous Australians with cirrhosis is important for providing patient-centred and culturally appropriate care. Liver specialist nurses have an important role in bridging the health literacy gap and in supporting Indigenous patients and families.

Australian general practitioners' perceptions of the barriers and opportunities for community-based care of patients with viral hepatitis: a mixed methods study.

Introduction Engagement of general practitioners (GPs) is essential to improving rates of diagnosis and treatment of viral hepatitis, as traditional tertiary hospital-based models of care often face challenges. Aim We investigated Australian general practitioners' perceptions of a community-based model of care for patients with viral hepatitis. Methods We conducted a mixed methods study using survey questionnaires (23 GPs) and an open-ended interview guide (10 GPs) at primary care clinics in Brisbane, Queensland, Australia. Quantitative data were analysed using descriptive statistics in Stata 15.1 and qualitative data were analysed using thematic analysis following an inductive approach. Results Patient loss to follow up and high cost of diagnostic tests were identified as the biggest challenges to providing care for patients with viral hepatitis. Most GPs interviewed believe a more community-based model of care with support to GPs may improve uptake of care and increase both GP and patient engagement. General practitioners felt a community-based model of care could also improve viral hepatitis testing and follow-up rates. Discussion For Australian GPs, improving patient retention and diagnostics access were key pressure points in the viral hepatitis care pathway. A broader and more profound capacity-building allows community-based viral hepatitis care to be sustainable.

"We Have to Be Strong Ourselves": Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer.

Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers' needs: managing multiple responsibilities; maintaining the carer's own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

End-of-life care for Aboriginal and Torres Strait Islander people with cancer: an exploratory study of service utilisation and unmet supportive care needs.

BACKGROUND: Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs. PURPOSE: To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life. METHOD: Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted. RESULTS: In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%). CONCLUSIONS: Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.

Contemporary Educational Interventions for General Practitioners (GPs) in Primary Care Settings in Australia: A Systematic Literature Review.

Background: The primary purpose of educational interventions is to optimize the clinical management of patients. General practitioners (GPs) play a major role in the detection and management of diseases. This systematic literature review will describe the type and outcomes of educational interventions designed for general practitioners (GPs) in the Australian context. Methods: PubMed, CINHAL, and Scopus databases were systematically searched for studies on educational interventions conducted for GPs in Australia during 1st January 2008 to 11th June 2018. Data collected on the methodology of the interventions, GPs satisfaction regarding the educational intervention, changes in knowledge, confidence, skills and clinical behavior of the GPs. We also assessed whether the acquired clinical competencies had an impact on organizational change and on patient health. Results: Thirteen publications were included in this review. The methods with which educational interventions were developed and implemented varied substantially and rigorous evaluation was generally lacking particularly in detailing the outcomes. The reported GP response rate varied between 2 and 96% across studies, depending upon the method of recruitment, the type of intervention and the study setting (rural vs. urban). The most effective recruitment strategy was a combination of initial contact coupled with a visit to GP practices. Nine of the studies reviewed reported improvement in at least one outcome measure: gaining knowledge, improving skills or change in clinical behavior which was translated into clinical practice. In the 3 pre- and post-intervention analysis studies, 90-100% of the participating GPs reported improvement in their knowledge and attitudes. Conclusion: Education interventions for GPs in Australia had low response (recruitment) and retention (GPs that participated in follow-ups) rates, even when financial benefits or CPD points were used as incentives. Higher GP response rates were achieved through multiple recruitment strategies. Multifaceted interventions were more likely to achieve the primary outcome by improving knowledge, skills or changing practice, but the effect was often modest. Inconsistent results were reported in studies involving the use of multiple contact methods within an intervention and conducting online interventions.

Indigenous compared with non-Indigenous Australian patients at entry to specialist palliative care: Cross-sectional findings from a multi-jurisdictional dataset.

BACKGROUND: There are few quantitative studies on palliative care provision to Indigenous Australians, a population known to experience distinctive barriers to quality healthcare and to have poorer health outcomes than other Australians. OBJECTIVES: To investigate equity of specialist palliative care service provision through characterising and comparing Indigenous and non-Indigenous patients at entry to care. METHODS: Using data (01/01/2010-30/06/2015) from all services participating in the multi-jurisdictional Palliative Care Outcomes Collaboration, Indigenous and non-Indigenous patients entering palliative care were compared on proportions vis-à-vis those expected from national statutory datasets, demographic characteristics, and entry-to-care status across fourteen 'problem' domains (e.g., pain, functional impairment) after matching by age, sex, and specific diagnosis. RESULTS: Of 140,267 patients, 1,465 (1.0%, much lower than expected from statutory data) were Indigenous, 133,987 (95.5%) non-Indigenous, and 4,905 (3.5%) had a missing identifier. The proportion of patients with a missing identifier diminished markedly over the study period, without a corresponding increase in the proportion identified as Indigenous. Indigenous compared with non-Indigenous patients were younger (mean 62.8 versus 73.0 years, p<0.001), a higher proportion were female (51.5% versus 46.3%; p<0.001) or resided outside major cities (44.2% versus 21.5%, p<0.001). Across all domains, Indigenous compared with matched non-Indigenous patients had lower or equal risk of status requiring prompt intervention. CONCLUSIONS: Indigenous patients (especially those residing outside major cities) are substantially under-represented in care by services participating in the nationwide specialist palliative care Collaboration, likely reflecting widespread access barriers. However, the similarity of status indicators among Indigenous and non-Indigenous patients at entry to care suggests that Indigenous patients who are able to access these services do not disproportionately experience clinically important impediments to care initiation.

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.

Australian cancer services: a survey of providers' efforts to meet the needs of Indigenous patients.

OBJECTIVE: To examine where Indigenous Australians undergo cancer treatment and learn about specific service initiatives that have been implemented to meet their needs. METHODS: Public cancer treatment centres across Australia were invited to participate in an online survey about various characteristics of their centre, including the type of service provided, Indigenous patient numbers and policy, and implementation of Indigenous-specific initiatives. RESULTS: Surveys were completed for 58 of 125 public cancer treatment centres. Almost half (47%) of the services saw more than 10 Indigenous patients per year, although Indigenous patients generally represented a small minority of patients. The most commonly reported initiatives were "having links with Indigenous health organisations in the community" (74% of services), "making a dedicated effort to address the needs of Indigenous patients" (69%) and proactively "creating partnerships with Indigenous communities and health organisations" (69%). CONCLUSIONS: The majority of respondents indicated that they were working to meet the needs of Indigenous patients and were interested in learning strategies from others to improve their services. More work is needed to describe and evaluate the specific initiatives that have been implemented. Implications for public health: Information from this study can assist cancer service providers to identify gaps in current services, plan new service delivery initiatives and ultimately improve Indigenous cancer outcomes.

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review.

BACKGROUND: Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. OBJECTIVES: To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. METHODS: A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. RESULTS: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. CONCLUSIONS: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas.

Cancer Services and Their Initiatives to Improve the Care of Indigenous Australians.

Indigenous Australians continue to experience significantly poorer outcomes from cancer than non-Indigenous Australians. Despite the importance of culturally appropriate cancer services in improving outcomes, there is a lack of awareness of current programs and initiatives that are aimed at meeting the needs of Indigenous patients. Telephone interviews were used to identify and describe the Indigenous-specific programs and initiatives that are implemented in a subset of the services that participated in a larger national online survey of cancer treatment services. Fourteen services located across Australia participated in the interviews. Participants identified a number of factors that were seen as critical to delivering culturally appropriate treatment and support, including having a trained workforce with effective cross-cultural communication skills, providing best practice care, and improving the knowledge, attitudes, and understanding of cancer by Indigenous people. However, over a third of participants were not sure how their service compared with others, indicating that they were not aware of how other services are doing in this field. There are currently many Indigenous-specific programs and initiatives that are aimed at providing culturally appropriate treatment and supporting Indigenous people affected by cancer across Australia. However, details of these initiatives are not widely known and barriers to information sharing exist. Further research in this area is needed to evaluate programs and initiatives and showcase the effective approaches to Indigenous cancer care.

Exploring treatment decision-making in cancer management for rural residents: Patient and provider perspectives on a recently established regional radiotherapy service.

AIM: The aim of this study was to examine stakeholders' views of how the establishment of the South West Radiation Oncology Service in Bunbury, Western Australia, has affected treatment decision-making, and the extent to which patients are involved in the decision-making process. METHODS: Semi-structured in-depth interviews were undertaken with 21 service providers involved in the treatment and care of people with cancer, and 17 adults diagnosed with cancer who opted to undergo radiotherapy (RT) treatment at the Service. Data were subject to thematic analysis using the qualitative data analysis software NVivo 10. RESULTS: Patients were overwhelmingly positive about their experiences at the Service, praising the quality of the care provided and noting the convenience associated with receiving treatment locally. Most patients reported feeling involved in decision-making, but tended to rely on and generally adopt advice from medical professionals regarding type and location of treatment. Although service providers in the region had become more aware of the regional RT service and referrals had increased, some patients continued to travel to the metropolitan area for treatment. Reasons identified for this included the need for more specialized RT treatment and the more extensive range of allied health services offered. CONCLUSION: Increased convenience and a lower financial burden are key reasons why rural cancer patients prefer treatment at a regional RT service rather than travelling to metropolitan centers. These factors highlight the need for ongoing improvement in access to local RT services so that disparities in cancer outcomes between rural and metropolitan patients are reduced.

An Exploration of Underrepresentation of Aboriginal Cancer Patients Attending a Regional Radiotherapy Service in Western Australia.

Travel logistics impede Aboriginal patients' uptake of cancer treatments and is one reason for the poorer outcomes of Aboriginal people with cancer. This research examined benefits of a newly established rurally based radiotherapy unit in southwest Western Australia (WA), and included exploring the experience of Aboriginal patients and possible reasons for Aboriginal people's underrepresentation in treatment. Semi-structured in-depth interviews with 21 service providers involved in the treatment and care of people with cancer, and 3 Aboriginal patients with cancer who undertook radiotherapy at the Service were undertaken. Data were subject to thematic analysis involving immersion in the data for familiarization, inductive coding, investigator discussion and refining of emerging themes and triangulation of patient and provider interviews. Aboriginal cancer patients were positive about the treatment and support they had received, highlighting the often complex challenges faced by rural Aboriginal cancer patients in accessing and maintaining treatment. Service providers offered suggestions for small numbers presenting to the Service, including late presentation, potential perceptions of cultural insensitivity on the part of service providers, out-of-pocket costs and under-ascertainment of Aboriginal status. The Service has put in place practices and initiatives to support patient health and wellbeing, including making the facility more welcoming towards Aboriginal people and ensuring culturally appropriate care.

Reducing barriers to consulting a General Practitioner in patients at increased risk of lung cancer: a qualitative evaluation of the CHEST Australia intervention.

Background: Lung cancer has one of the lowest survival outcomes of any cancer because over two-thirds of patients are diagnosed when curative treatment is no longer possible, partly due to later presentation with symptoms to a healthcare provider. Objective: To explore the theoretical underpinning of the Scottish CHEST intervention in participants randomized to the intervention group within the CHEST Australia trial. Methods: A purposive maximum variation sample of participants who received the intervention in the CHEST trial in Perth, Western Australia (N = 13) and Melbourne, Victoria, (N = 7) were interviewed. Patients were asked about their experience of the CHEST consultation, their recall of the main messages, their symptom appraisal and issues relating to help seeking when they develop symptoms. Thematic analysis was conducted to draw common themes between the participants. Results: We identified themes consistent with the theoretical basis of the CHEST intervention. Barriers to consultation identified in the CHEST Australia trial participants were smoker stigmatization, guilt, fatalism and symptom normalization. We identified a general perceived mistrust of GPs based on previous negative experiences of visiting their GP in relation to their smoking. The intervention tackled barriers around lecturing and feelings of guilt and stigma related to smoking. We identified expected effects on salience and personal relevance of symptoms. Participants reported a clearer understanding of what to look out for and when to take action after the CHEST intervention. Conclusions: These findings suggest that the CHEST Australia intervention is achieving the desired objectives at the qualitative level through the proposed theoretical mechanisms.

"Champion" behavior in a community obesity reduction program: Feedback from peers.

Current interventions to reduce obesity have limited success. This study aimed to determine the characteristics of successful champions (non health professional/community leaders) and to assess how these relate to acceptability ratings of an obesity reduction intervention-the Waist Disposal Challenge. A total of 200 peer participants completed questionnaires. Positive ratings of champions' performance were significantly correlated with perceptions of the success and suitability of the Waist Disposal Challenge. The qualitative feedback concurred that the program prompted weight loss and was a positive social experience which resulted in actual behavioral changes. Selecting suitable champions is likely to influence the success of such community health programs.

Talking about the not talked about: use of, and reactions to, a DVD promoting bowel cancer screening to Aboriginal people.

OBJECTIVE: To examine a) the implementation and use of a DVD developed to educate Aboriginal people about bowel cancer and bowel cancer screening; and b) broader aspects of Aboriginal participation in the National Bowel Cancer Screening Program. METHODS: Qualitative methods and descriptive approaches were used. Data were collected using face-to-face and telephone interviews and focus group discussions. There were 67 participants, including those involved in the development and distribution of the DVD, health professionals and Aboriginal community members. RESULTS: Although the DVD received a positive reaction from participants, fewer than half the DVDs had been distributed. Furthermore, the small number of DVDs that had been distributed were under-utilised. CONCLUSION: The weaknesses do not appear to lie with the resource itself but can be attributed partly to poor distribution and promotion. This may have been compounded by the structure of the National Bowel Cancer Screening Program, which limited the engagement of Aboriginal community members and health providers whose focus is largely directed towards more pressing health care issues. IMPLICATIONS: Interest in the resource may increase once the Aboriginal component of the screening program is more closely linked with primary care.

Factors contributing to delayed diagnosis of cancer among Aboriginal people in Australia: a qualitative study.

BACKGROUND/OBJECTIVES: Delayed presentation of symptomatic cancer is associated with poorer survival. Aboriginal patients with cancer have higher rates of distant metastases at diagnosis compared with non-Aboriginal Australians. This paper examined factors contributing to delayed diagnosis of cancer among Aboriginal Australians from patient and service providers' perspectives. METHODS: In-depth, open-ended interviews were conducted in two stages (2006-2007 and 2011). Inductive thematic analysis was assisted by use of NVivo looking around delays in presentation, diagnosis and referral for cancer. PARTICIPANTS: Aboriginal patients with cancer/family members (n=30) and health service providers (n=62) were recruited from metropolitan Perth and six rural/remote regions of Western Australia. RESULTS: Three broad themes of factors were identified: (1) Contextual factors such as intergenerational impact of colonisation and racism and socioeconomic deprivation have negatively impacted on Aboriginal Australians' trust of the healthcare professionals; (2) health service-related factors included low accessibility to health services, long waiting periods, inadequate numbers of Aboriginal professionals and high staff turnover; (3) patient appraisal of symptoms and decision-making, fear of cancer and denial of symptoms were key reasons patients procrastinated in seeking help. Elements of shame, embarrassment, shyness of seeing the doctor, psychological 'fear of the whole health system', attachment to the land and 'fear of leaving home' for cancer treatment in metropolitan cities were other deterrents for Aboriginal people. Manifestation of masculinity and the belief that 'health is women's domain' emerged as a reason why Aboriginal men were reluctant to receive health checks. CONCLUSIONS: Solutions to improved Aboriginal cancer outcomes include focusing on the primary care sector encouraging general practitioners to be proactive to suspicion of symptoms with appropriate investigations to facilitate earlier diagnosis and the need to improve Aboriginal health literacy regarding cancer. Access to health services remains a critical problem affecting timely diagnosis.

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

OBJECTIVE: We aim to systematically review studies that identify factors influencing cancer treatment decision-making among indigenous peoples. METHODS: Following the outline suggested by the Preferred Reporting Items for Systematic Review and Meta-analysis, a rigorous systematic review and meta-synthesis were conducted of factors that influence cancer treatment decision-making by indigenous peoples. A total of 733 articles were retrieved from eight databases and a manual search. After screening the titles and abstracts, the full text of 26 articles were critically appraised, resulting in five articles that met inclusion criteria for the review. Because the five articles to be reviewed were qualitative studies, the Critical Appraisal Skills Program toolkit was used to evaluate the methodological quality. A thematic synthesis was employed to identify common themes across the studies. RESULTS: Multiple socio-economic and cultural factors were identified that all had the potential to influence cancer treatment decision-making by indigenous people. These factors were distilled into four themes: spiritual beliefs, cultural influences, communication and existing healthcare systems and structures. CONCLUSION: Although existing research identified multiple factors influencing decision-making, this review identified that quality studies in this domain are scarce. There is scope for further investigation, both into decision-making factors and into the subsequent design of culturally appropriate programmes and services that meet the needs of 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 women's 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 network's 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 network's 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.

BACKGROUND: Cancer 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. METHODS: Data 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. RESULTS: Flexibility 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. CONCLUSIONS: Despite 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.

BACKGROUND: Indigenous 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. METHODS: The 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. RESULTS: All 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. CONCLUSIONS: This 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.