"The support has been brilliant": experiences of Aboriginal and Torres Strait Islander patients attending two high performing cancer services.

BACKGROUND: Improving health outcomes for Indigenous people by providing person-centred, culturally safe care is a crucial challenge for the health sector, both in Australia and internationally. Many cancer providers and support services are committed to providing high quality care, yet struggle with providing accessible, culturally safe cancer care to Indigenous Australians. Two Australian cancer services, one urban and one regional, were identified as particularly focused on providing culturally safe cancer care for Indigenous cancer patients and their families. The article explores the experiences of Indigenous cancer patients and their families within the cancer services and ascertains how their experiences of care matches with the cancer services' strategies to improve care. METHODS: Services were identified as part of a national study designed to identify and assess innovative services for Indigenous cancer patients and their families. Case studies were conducted with a small number of identified services. In-depth interviews were conducted with Indigenous people affected by cancer and hospital staff. The interviews from two services, which stood out as particularly high performing, were analysed through the lens of the patient experience. RESULTS: Eight Indigenous people affected by cancer and 23 hospital staff (Indigenous and non-Indigenous) were interviewed. Three experiences were shared by the majority of Indigenous cancer patients and family members interviewed in this study: a positive experience while receiving treatment at the cancer service; a challenging time between receiving diagnosis and reaching the cancer centre; and the importance of family support, while acknowledging the burden on family and carers. CONCLUSIONS: This article is significant because it demonstrates that with a culturally appropriate and person-centred approach, involving patients, family members, Indigenous and non-Indigenous staff, it is possible for Indigenous people to have positive experiences of cancer care in mainstream, tertiary health services. If we are to improve health outcomes for Indigenous people it is vital more cancer services and hospitals follow the lead of these two services and make a sustained and ongoing commitment to strengthening the cultural safety of their service.

Cancer support services: Are they meeting the needs of rural radiotherapy patients?

This paper examines the supportive care in place to meet the needs of patients receiving radiotherapy at a regional oncology service in Bunbury, Western Australia. Semi-structured in-depth interviews with 21 service providers and 17 adults diagnosed with cancer who underwent radiotherapy at the Service were recorded, transcribed and analysed thematically. Key themes relevant were co-operation and collaboration of interdisciplinary team members; support from organisations to assist with accommodation, transport, emotional support and provision of practical assistance, as well as barriers to accessing support. Most participants were positive about the support available, recognising the needs of rural radiotherapy patients for assistance with travel, accommodation and psychosocial support to help deal with the stressors they face. Collaboration between the various service providers maximised the support available to patients but the drop off in psychosocial support once the intensity of treatment was completed was identified as a weakness in the support available. The support system, established around a regional radiotherapy service, was enhanced by the collaborative professional relationships developed among service providers. The service extends beyond clinical service delivery by recognising financial, logistical and psychosocial support needs, factors to be considered to ensure rural radiotherapy patients are provided with holistic care.

Passing on wisdom: exploring the end-of-life wishes of Aboriginal people from the Midwest of Western Australia.

INTRODUCTION: Indigenous patients with life-limiting conditions have complex needs, experience reduced access to and uptake of treatment, and have lower utilisation of palliative care services than the general population. Lack of understanding of the role of palliative care and poor availability of culturally safe specialist palliative care services impact on Indigenous people's end-of-life decision-making. METHODS: To understand Aboriginal people's perspectives and experiences at the end of life, an exploratory study using facilitated group discussions in community settings in a region of Western Australia was undertaken. Local Aboriginal people were engaged to talk frankly about their wishes and concerns around end of life. The community consultations included two meetings at the local Aboriginal corporation, an evening meeting for invited community members, a meeting at the local Aboriginal community controlled health service and two further meetings of community members at local gathering places. These were supplemented by the analysis of previous in-depth video-recorded interviews that were undertaken with Aboriginal people with cancer reporting on their concerns and wishes. RESULTS: The community consultations raised considerable discussion about wills, where to die, burial versus cremation, and the cost of funerals. Possibilities emerging from participants' reflections on the issue were public celebrations to honour someone's life, the potential use of sorting cards to help discussions about end-of-life personal wishes, and interest in making and decorating coffins. Aboriginal people with cancer raised similar issues, and focused on avoiding family disharmony by ensuring their family were aware of their end-of-life wishes. CONCLUSION: Within a safe space, Aboriginal people were happy to talk about end-of-life wishes, although certain aspects of death remain contentious. Sorting cards, ceremonies, education and care roles involving Aboriginal people offer potential means for effectively engaging Aboriginal people in preparing for death and dealing with grief.

Yarning quiet ways: Aboriginal carers' views on talking to youth about sexuality and relationships.

ISSUE ADDRESSED: Research suggests that young Indigenous people want carers to take a more active role in discussions about sexual health. The aim of this study was to ascertain carers' perspectives of: the importance of providing young people with information about sex and sexual health; what they want young people to know about sex and sexual health; and facilitators and barriers to discussing sex and sexual health with youth. METHODS: Thirteen focus groups and three interviews were conducted with 81 carers in four rural and urban regions of Western Australia. Data were coded using a thematic approach, analysed using inductive Framework Analysis, and interpreted using the Aboriginal Family Wellbeing Model of Empowerment. RESULTS: Many participants recognised the need for talking with young people about sex, and said they drew upon resources such as books, pamphlets and television and used humour to impart lessons. However, a large proportion of participants reported difficulties in educating youth about sex. Participants noted that colonisation had disrupted traditional structures for educating young people, and that sex was a challenging topic. The forced removal of children had interfered with Indigenous family structures and deprived some participants of the opportunity to acquire knowledge and skills from their own parents. CONCLUSIONS: Our findings emphasise the potential role of culture and empowerment in further improving outcomes related to relationships and sexual health. There is a need for more research into models of culturally-empowering, family-centred strategies for improving the sexual literacy of Indigenous youth.

Putting Policy into Practice: How Three Cancer Services Perform against Indigenous Health and Cancer Frameworks.

Improving cancer outcomes for Indigenous people by providing culturally safe, patient-centred care is a critical challenge for health services worldwide. This article explores how three Australian cancer services perform when compared to two national best practice guidelines: the National Aboriginal and Torres Strait Islander Cancer Framework (Cancer Framework) and the National Safety and Quality Health Service (NSQHS) User Guide for Aboriginal and Torres Strait Islander Health (User Guide). The services were identified through a nationwide project undertaken to identify cancer services providing treatment to Indigenous cancer patients. A small number of services which were identified as particularly focused on providing culturally safe cancer care participated in case studies. Interviews were conducted with 35 hospital staff (Indigenous and non-Indigenous) and 8 Indigenous people affected by cancer from the three services. The interviews were analysed and scored using a traffic light system according to the seven priorities of the Cancer Framework and the six actions of the NSQHS User Guide. While two services performed well against the User Guide, all three struggled with the upstream elements of the Cancer Framework, suggesting that the treatment-focused Optimal Care Pathway for Aboriginal and Torres Strait Islander People with Cancer (Cancer Pathway) may be a more appropriate framework for tertiary services. This article highlights the importance of a whole-of-organisation approach when addressing and embedding the six actions of the User Guide. Health services which have successfully implemented the User Guide are in a stronger position to implement the Cancer Framework and Cancer Pathway.

"We're very much part of the team here": A culture of respect for Indigenous health workforce transforms Indigenous health care.

BACKGROUND: Improving health outcomes for Indigenous people by strengthening the cultural safety of care is a vital challenge for the health sector, both in Australia and internationally. Although Indigenous people have long requested to have Indigenous practitioners involved in their health care, many health services report difficulties with recruiting and retaining Indigenous staff. This article describes Indigenous workforce policies and strategies from two Australian health services, as well as cancer-service specific strategies. METHODS: Services were identified as part of a national study designed to identify and assess innovative services for Indigenous cancer patients and their families. In-depth interviews were conducted in a small number of identified services. The interviews from two services, which stood out as particularly high performing, were analysed through the lens of Indigenous health workforce. RESULTS: Twenty-four hospital staff (Indigenous and non-Indigenous), five Indigenous people with cancer and three family members shared their views and experiences. Eight themes were identified from the way that the two services supported their Indigenous workforce: strong executive leadership, a proactive employment strategy, the Indigenous Health Unit, the Indigenous Liaison Officer, multidisciplinary team inclusion, professional development, work environment and a culture of respect. Participants reported two positive outcomes resulting from the active implementation of the eight workforce themes: 'Improved Indigenous patient outcomes' and 'Improved staff outcomes'. CONCLUSIONS: These two cancer services and their affiliated hospitals show how positive patient outcomes and a strong Indigenous health workforce can be achieved when a health service has strong leadership, commits to an inclusive and enabling culture, facilitates two-way learning and develops specific support structures appropriate for Indigenous staff. It is hoped that the strategies captured in this study will be used by health services and cancer services to inform their own policies and programs to support building their Indigenous workforce.

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.

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.

Overcoming barriers to use of child car seats in an urban Aboriginal community-formative evaluation of a program for Aboriginal Community Controlled Health Services.

BACKGROUND: Little is known about the barriers to use of child car seats in Australian Aboriginal communities, or the acceptability of programs to increase appropriate car seat use. This formative evaluation sought to consult and partner with Aboriginal Community Controlled Health Services (ACCHS) to develop and evaluate the feasibility and acceptability of a program intended to improve optimal use of child car seats. METHODS: Focus groups were conducted with parents and carers of Aboriginal children to identify the barriers and facilitating factors for child car seat use, and staff of two ACCHS were interviewed to inform program development. Following the implementation of the resulting multi-faceted program, consisting of staff training, education, hands-on demonstrations and a subsidised car seat distribution scheme, interviews were conducted to assess process issues and acceptability with 13 staff members. RESULTS: Parents and carers in the focus groups reported a lack of awareness of child car seat use, confusion about the right car seats for different aged children but agreed about the importance of safety and community responsibility to keep children safe in cars. Interviews with service staff informed an approach to deliver relevant information. Information and resources were delivered to families, while the car seat distribution scheme supplied 33 families with child car seats. Following the conclusion of the program, staff reported that the program was relevant to their role. They also valued the car seat distribution scheme. Staff training in selection and installation of car seats increased confidence in staff knowledge. CONCLUSIONS: We developed a program to promote child car seat use in ACCHS, which focused on developing capacity, made use of existing infrastructure and developed resources for use in this setting. The program shows promise as a means to promote child car seat use in Aboriginal communities; however, the impact on child car seat use will need to be evaluated in a larger scale prospective trial.

"He's the Number One Thing in My World": Application of the PRECEDE-PROCEED Model to Explore Child Car Seat Use in a Regional Community in New South Wales.

We explored the factors influencing the use of age-appropriate car seats in a community with a high proportion of Aboriginal families in regional New South Wales. We conducted a survey and three focus groups with parents of children aged 3-5 years enrolled at three early learning centres on the Australian south-east coast. Survey data were triangulated with qualitative data from focus groups and analysed using the PRECEDE-PROCEED conceptual framework. Of the 133 eligible families, 97 (73%) parents completed the survey including 31% of parents who reported their children were Aboriginal. Use of age-appropriate car seats was reported by 80 (83%) of the participants, and awareness of the child car seat legislation was high (91/97, 94%). Children aged 2-3 years were less likely reported to be restrained in an age-appropriate car seat than were older children aged 4-5 years (60% versus 95%: χ² = 19.14, p < 0.001). Focus group participants highlighted how important their child's safety was to them, spoke of the influence grandparents had on their use of child car seats and voiced mixed views on the value of authorised child car seat fitters. Future programs should include access to affordable car seats and target community members as well as parents with clear, consistent messages highlighting the safety benefits of using age-appropriate car seats.

Gender inequalities in cardiovascular risk factor assessment and management in primary healthcare.

OBJECTIVES: To quantify contemporary differences in cardiovascular disease (CVD) risk factor assessment and management between women and men in Australian primary healthcare services. METHODS: Records of routinely attending patients were sampled from 60 Australian primary healthcare services in 2012 for the Treatment of Cardiovascular Risk using Electronic Decision Support study. Multivariable logistic regression models were used to compare the rate of CVD risk factor assessment and recommended medication prescriptions, by gender. RESULTS: Of 53 085 patients, 58% were female. Adjusting for demographic and clinical characteristics, women were less likely to have sufficient risk factors measured for CVD risk assessment (OR (95% CI): 0.88 (0.81 to 0.96)). Among 13 294 patients (47% women) in the CVD/high CVD risk subgroup, the adjusted odds of prescription of guideline-recommended medications were greater for women than men: 1.12 (1.01 to 1.23). However, there was heterogeneity by age (p <0.001), women in the CVD/high CVD risk subgroup aged 35-54 years were less likely to be prescribed the medications (0.63 (0.52 to 0.77)), and women in the CVD/high CVD risk subgroup aged ≥65 years were more likely to be prescribed the medications (1.34 (1.17 to 1.54)) than their male counterparts. CONCLUSIONS: Women attending primary healthcare services in Australia were less likely than men to have risk factors measured and recorded such that absolute CVD risk can be assessed. For those with, or at high risk of, CVD, the prescription of appropriate preventive medications was more frequent in older women, but less frequent in younger women, compared with their male counterparts. TRIAL REGISTRATION NUMBER: 12611000478910, Pre-results.

Effect of a computer-guided, quality improvement program for cardiovascular disease risk management in primary health care: the treatment of cardiovascular risk using electronic decision support cluster-randomized trial.

BACKGROUND: Despite effective treatments to reduce cardiovascular disease risk, their translation into practice is limited. METHODS AND RESULTS: Using a parallel arm cluster-randomized controlled trial in 60 Australian primary healthcare centers, we tested whether a multifaceted quality improvement intervention comprising computerized decision support, audit/feedback tools, and staff training improved (1) guideline-indicated risk factor measurements and (2) guideline-indicated medications for those at high cardiovascular disease risk. Centers had to use a compatible software system, and eligible patients were regular attendees (Aboriginal and Torres Strait Islander people aged ≥ 35 years and others aged ≥ 45 years). Patient-level analyses were conducted using generalized estimating equations to account for clustering. Median follow-up for 38,725 patients (mean age, 61.0 years; 42% men) was 17.5 months. Mean monthly staff support was <1 hour/site. For the coprimary outcomes, the intervention was associated with improved overall risk factor measurements (62.8% versus 53.4% risk ratio; 1.25; 95% confidence interval, 1.04-1.50; P=0.02), but there was no significant differences in recommended prescriptions for the high-risk cohort (n=10,308; 56.8% versus 51.2%; P=0.12). There were significant treatment escalations (new prescriptions or increased numbers of medicines) for antiplatelet (4.3% versus 2.7%; P=0.01), and BP lowering (18.2% versus 11.0%; P=0.02) but not lipid-lowering medications. CONCLUSIONS: In Australian primary healthcare settings, a computer-guided quality improvement intervention, requiring minimal support, improved cardiovascular disease risk measurement but did not increase prescription rates in the high-risk group. Computerized quality improvement tools offer an important, albeit partial, solution to improving primary healthcare system capacity for cardiovascular disease risk management. CLINICAL TRIAL REGISTRATION URL: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=336630. Australian New Zealand Clinical Trials Registry No. 12611000478910.

Buckle up safely (shoalhaven): a process and impact evaluation of a pragmatic, multifaceted preschool-based pilot program to increase correct use of age-appropriate child restraints.

OBJECTIVE: To conduct a process and impact evaluation of a multifaceted education-based pilot program targeting correct use of age-appropriate restraints in a regional setting with a high proportion of Aboriginal and Torres Strait Islander families. METHODS: The program was delivered in 2010 in 3 early learning centers where 31 percent of the children were of Aboriginal and Torres Strait Islander descent. Each component of the program was assessed for message consistency and uptake. To measure program effectiveness, participating children were matched 1:1 by age, language spoken at home, and annual household income with 71 children from the control arm of a contemporaneous trial. The outcome measure in the control and program centers (a 4-category ordinal scale of restraint use) was compared using ordinal logistic regression accounting for age of the parent. RESULTS: Process evaluation found that though program components were delivered with a consistency of message, uptake was affected by turnover of all staff at one center and by parents experiencing difficulty in paying for subsidized restraints at each of the centers. Impact evaluation found that children from the centers receiving the program had nearly twice the odds of being in a better restraint category than children matched from the control group (adjusted odds ratio [ORadj] = 2.06, 95% confidence interval [CI], 1.09-3.90). CONCLUSIONS: This was a pragmatic study reflecting the real-life issues of implementing a program in preschools where 57 percent of families had a low income and turnover of staff was high. Despite these issues, impact evaluation showed that the integrated educational program showed promise in increasing correct use of age-appropriate restraints. The findings from this pilot study support the use of an integrated educational program that includes access to subsidized restraints to promote best practice child restraint use among communities that include a high proportion of Aboriginal and Torres Strait Islander families in New South Wales. Future trials in similar settings should consider offering more support in centers with high turnover of staff and offering alternative methods of payment when families experience financial difficulties in purchasing the subsidized restraints. If proven in larger trials, this approach could reduce death and injuries in child passengers in this vulnerable group.

Understanding the extent and impact of Indigenous road trauma.

While transport-related injuries represent a leading cause of death for all Australians, several disparities exist between Indigenous and non-Indigenous populations. Compared to non-Indigenous Australians, Indigenous Australians are more than twice as likely to have a transport-related fatal injury, with fatality risk remaining high with age while declining among the non-Indigenous community. Few studies and appropriate databases exist to elucidate the causes and solutions to this over-representation. This paper presents a summary of known risk factors, discusses the impact of road injury at multiple levels and suggests steps towards addressing this significant public health problem.

Injury prevention in Australian Indigenous communities.

Injury prevention in Indigenous communities in Australia is a continuing national challenge, with Indigenous fatality rates due to injury three times higher than the general population. Suicide and transport are the leading causes of injury mortality, and assault, transport and falls the primary causes of injury morbidity. Addressing the complex range of injury problems in disadvantaged Indigenous communities requires considerable work in building or enhancing existing capacity of communities to address local safety issues. Poor data, lack of funding and absence of targeted programs are some of the issues that impede injury prevention activities. Traditional approaches to injury prevention can be used to highlight key areas of need, however adaptations are needed in keeping with Indigenous peoples' holistic approach to health, linked to land and linked to community in order to address the complex spiritual, emotional and social determinants of Indigenous injury.