Empowering Voice through the Creation of a Safe space: An experience of Aboriginal Women in Regional Queensland.

BACKGROUND: Sharing stories creates a space for respectful conversation and contributes to both knowledge and a sense of fellowship. This paper reflects on the experience of the research team in supporting a group of Aboriginal women to create safe spaces and to share their stories of healing, social and emotional wellbeing. METHODS: Secondary data of a study exploring community perceptions about cancer were analysed using the holistic model of Indigenous Wellbeing developed by the Rumbalara Aboriginal Cooperative (2008). Qualitative data were collected during yarning sessions with a group of Aboriginal women while creating a quilt. RESULTS: Four elements of the Indigenous Wellbeing model were identified: connectedness, sense of control, threats and relationship with the mainstream. The yarning sessions promoted dialogue, identified needs and supported the voices of the participants. A duality of forces (positive and negative) influencing community wellbeing was identified. CONCLUSION: This project highlights the need for spaces that support people and the community to express concerns, identify needs, propose solutions and begin a dialogue that encourages empowerment. Community-driven conversation and the identification of safe and empowering spaces can serve to empower social and emotional wellbeing.

Patterns of primary health care service use of Indigenous Australians diagnosed with cancer.

PURPOSE: The role of general practitioners in cancer care has expanded in recent years. However, little is known about utilization of primary health care (PHC) services by patients with cancer, particularly among socio-economically disadvantaged groups. We describe utilization of PHC services by patients with cancer, and the nature of the care provided. The study focuses on a disadvantaged group in Australia, namely Indigenous Australians. METHODS: A retrospective audit of clinical records in ten PHC services in Queensland, Australia. Demographic and clinical data of Indigenous Australians diagnosed with cancer during 2010-2016 were abstracted from patient's medical records at the PHC services. The rates of cancer-related visits were calculated using person years at risk as a denominator. RESULTS: A total of 138 patients' records were audited. During 12 months following the cancer diagnosis, patients visited the PHC service on average 5.95 times per year. Frequency of visits were relatively high in remote areas and among socioeconomic disadvantaged patients (IRR = 1.87, 95%CI 1.61-2.17; IRR = 1.79, 95%CI 1.45-2.21, respectively). Over 80% of visits were for seeking attention for symptoms, wound care, and emotional or social support. Patients who did not undergo surgery, had greater comorbidity, received chemotherapy and/or radiotherapy, and male gender had significantly greater rate of visits than their counterparts. CONCLUSION: The frequency of utilization of PHC services, especially by patients with comorbidities, and the range of reasons for attendance highlights the important role of PHC services in providing cancer care. The reliance on PHC services, particularly by patients in remote and disadvantaged communities, has important implications for appropriate resourcing and support for services in these locations.

Are general practitioners getting the information they need from hospitals and specialists to provide quality cancer care for Indigenous Australians?

BACKGROUND: Cancer care involves many different healthcare providers. Delayed or inaccurate communication between specialists and general practitioners (GP) may negatively affect care. AIM: To describe the pattern and variation of communication between primary healthcare (PHC) services and hospitals and specialists in relation to the patient's cancer care. METHODS: A retrospective audit of clinical records of Indigenous Australians diagnosed with cancer during 2010-2016 identified through 10 PHC services in Queensland is described. Poisson regression was used to model the dichotomous outcome availability of hospital discharge summary versus not. RESULTS: A total of 138 patient records was audited; 115 of those patients visited the PHC service for cancer-related care after cancer diagnosis; 40.0% visited the service before a discharge summary was available, and 36.5% of the patients had no discharge summary in their medical notes. While most discharge summaries noted important information about the patient's cancer, 42.4% lacked details regarding the discharge medications regimen. CONCLUSIONS: Deficits in communication and information transfer between specialists and GP may adversely affect patient care. Indigenous Australians are a relatively disadvantaged group that experience poor health outcomes and relatively poor access to care. The low proportion of discharge summaries noting discharge medication regimen is of concern among Indigenous Australians with cancer who have high comorbidity burden and low health literacy. Our findings provide an insight into some of the factors associated with quality of cancer care, and may provide guidance for focus areas for further research and improvement efforts.

"I'm a Survivor": Aboriginal and Torres Strait Islander Cancer Survivors' Perspectives of Cancer Survivorship.

BACKGROUND: Disparity in outcomes between Indigenous and non-Indigenous people after cancer diagnosis is multifactorial, including lower cancer screening participation, later diagnosis, reduced access and uptake of cancer treatment, higher rate of comorbidities, and barriers accessing the health system. Little is known about cancer survivorship experiences. OBJECTIVE: The aim of this study was to explore Indigenous Australian cancer survivor's perspectives of cancer survivorship. METHODS: Indigenous people who completed cancer treatment 6 months to 5 years before fieldwork were recruited from a tertiary hospital and remote primary health service for this qualitative study. Data collection was guided by yarning methods, a culturally appropriate method emphasizing storytelling. Data were interpreted using a social constructionist framework. RESULTS: Thirteen women and 6 men were interviewed. Participants' past experiences contributed to their specific identity as survivors. Participants described factors affecting a positive transition from cancer patient to cancer survivor and the importance of ongoing family support in helping to manage survivorship. Finally, participants described a range of community support they received and provided to others and how this improved their cancer survivorship. CONCLUSION: Although a range of experiences are presented, this study provides evidence that the survivorship perspectives of Indigenous cancer survivors may be, in part, shared by non-Indigenous cancer survivors. IMPLICATIONS FOR PRACTICE: Acknowledging Indigenous cancer survivors' past experiences and how these influence their overall well-being is important for providing patient-centered and culturally appropriate care. Nurses and other healthcare professionals may use this knowledge to foster a range of coping strategies to assist Indigenous cancer survivors to live well.

Tele-Rheumatology to Regional Hospital Outpatient Clinics: Patient Perspectives on a New Model of Care.

Background: Telehealth has the potential to improve access to specialist rheumatology services. The timely and appropriate delivery of care to those living with rheumatological diseases is crucial to ensuring excellent long-term outcomes. Introduction: The outcomes of a tele-rheumatology service delivered to regional hospital outpatient clinics were evaluated with patient perspectives and acceptability analyzed. Materials and Methods: A tele-rheumatology clinic was commenced in Australia from a metropolitan hospital to five regional clinics. The model of care included a trained nurse at the spoke site linked to a rheumatologist from the hospital hub site for follow-up consultations of stable review patients using videoconferencing. Surveys assessing perspectives on the tele-rheumatology encounter were completed and a subsample participated in focus groups to further explore acceptability. Results: Forty-eight patients with a diverse range of conditions participated. Patient travel was reduced on average by 95 km and 42% avoided time off work. Eighty-eight to 100% of participants agreed/strongly agreed with statements relating to acceptability, quality of physician-patient interaction, and nurse involvement. Twenty-nine percent expressed the need for a physical examination by a specialist rheumatologist and 25% felt that an in-person consultation would establish better patient-physician rapport. Qualitatively, participants viewed tele-rheumatology as equivalent to in-person care after an initial adjustment period. Discussion: Tele-rheumatology through videoconferencing for follow-up of patients with established disease is acceptable to patients and demonstrates the potential to improve time, travel, and cost burdens placed on patients who live remotely compared with traditional, face-to-face rheumatology care. Conclusions: Implementation of sustainable and patient acceptable models of tele-rheumatology care may allow timely access to all patients living with rheumatological conditions.

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.

Unmet supportive care needs among people with cancer: A cross-cultural comparison between Indigenous and Non-Indigenous Australians.

OBJECTIVES: This study describes and compares the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer. METHODS: Data from two cross-sectional supportive care needs studies were matched in a 1:1 ratio for Indigenous (n = 125) and Non-Indigenous (n = 125) Australian adults diagnosed with cancer. Descriptive statistics were used to compare type and prevalence of 24 need items measured by the SCNS-SF34 and SCNAT-IP. RESULTS: A higher proportion of Non-Indigenous participants compared to Indigenous participants reported having any moderate-to-high level of unmet needs (70% vs. 54%, p = 0.013) and the difference was consistently observed across non-matched characteristics. While concerns for caregivers, fear of recurrence and pain were central needs for both Indigenous participants and Non-Indigenous participants, there were some key differences in the specific unmet needs between groups. Physical issues including doing usual daily activities and dealing with fatigue were the top priorities for Non-Indigenous people, while money worries, dealing with psychological issues such as how to keep their spirit strong or hope about their future appeared to be priorities for Indigenous people. CONCLUSIONS: Variations in the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer may guide health professionals to target specific needs when preparing care plans.

'We just don't talk about it': Aboriginal and Torres Strait Islander peoples' perceptions of cancer in regional Queensland.

INTRODUCTION: Disparities in cancer outcomes between Indigenous and non-Indigenous people are well reported. Some Australian Indigenous communities' beliefs about cancer may influence health behaviours, support for those with cancer and ,ultimately, treatment outcomes. This project was instigated by request of a cultural adviser from a regional Queensland community and aims to make community perceptions of cancer visible, facilitate development of resources representing these perceptions and briefly evaluate the project from the community's perspective. METHODS: The project was guided by qualitative, participatory and visual research methodology. Community participation was engaged by identifying community champions who helped recruit interested community members and continued project momentum. The project was defined and driven by community, and a consensus decision making approach was used to select resources or activities to represent community perceptions of cancer and raise cancer awareness. Qualitative data were collected from yarning groups at two community forums and subsequent group sessions to explore and define community perceptions of cancer. Informed consent was obtained prior to audio-taped yarning groups. Data were also included from publicly available interviews broadcast on radio and television. All data about community perceptions of cancer and of the project were thematically analysed. Photovoice using cameras was the visual method chosen to capture images and stories representing community cancer beliefs. RESULTS: Three main themes were derived from thematic analysis of data collected about community perceptions of cancer, identified by participants as important to improving cancer outcomes: (1) silence in the community, (2) support is important for survivorship and (3) awareness of cancer and the importance of sharing positive stories. A consensus decision-making approach resulted in the community choosing two resources to stimulate community discussion about cancer, raise awareness and reduce stigma. These were creating a community quilt, with each quilt square representing community perceptions of cancer, and producing a community calendar, with messages promoting healthy behaviours and cancer screening. The overall project was viewed as valuable for facilitating and improving the conversation about cancer with family, friends, the broader community and health professionals. Group sessions were considered important for providing a shared, safe space for support, for asking health related questions and as an instigator to share cancer related knowledge and stories with others. CONCLUSION: Silence around cancer may influence awareness and discussion about cancer, screening participation and help-seeking behaviour in this community. In this project, engaging with the community created a safe space for conversation around a previously taboo topic, which could lead to improved screening and help seeking behaviour. The role of primary health care in reducing health disparities by partnering with community to conduct awareness and prevention activities and by providing culturally appropriate care for Indigenous people is emphasised.

Community-identified recommendations to enhance cancer survivorship for Aboriginal and Torres Strait Islander people.

Indigenous Australians diagnosed with cancer experience higher mortality and lower survival rates compared to non-Indigenous Australians. Reasons are multifaceted and complex. Knowledge about Indigenous cancer survivors' perspectives of positive cancer survivorship is a gap in research evidence. The study explored cancer survivorship perspectives of Indigenous cancer survivors, their support people and healthcare workers with a view to developing recommendations for cancer survivorship. Indigenous Australians who completed cancer treatment in the previous 6 months to 5 years, their support people and primary healthcare workers were recruited from primary healthcare centres and a large tertiary Queensland hospital. Semi-structured interviews and focus groups were conducted with written and informed consent obtained prior. Participants emphasised key action areas and recommendations to enhance cancer survivorship, namely: establishing a community cancer advocate and peer support program, availability and use of a cancer-specific Indigenous primary healthcare worker and hospital-based Indigenous patient navigator, as well as adoption of question prompt lists and cancer survivorship care plans. Existing research suggests significant benefits from implementing the key recommendations identified in this study. Greater support and commitment across health sectors and funding bodies is needed to promote institutional change and health system development.

Exploring Positive Survivorship Experiences of Indigenous Australian Cancer Patients.

Amongst Indigenous Australians, "cancer" has negative connotations that detrimentally impact upon access to cancer care services. Barriers to accessing cancer services amongst Indigenous Australians are widely reported. In contrast, factors that facilitate this cohort to successfully navigate cancer care services ("enablers") are scarcely reported in the literature. Through qualitative interviews, this article examines factors that assist Indigenous Australians to have positive cancer experiences. Semi-structured interviews were conducted with twelve adult Indigenous oncology patients recruited from a tertiary hospital in Queensland, Australia during 2012-2014. Data generated from the interviews were independently reviewed by two researchers via inductive thematic analytical processes. Discussions followed by consensus on the major categories allowed conclusions to be drawn on potential enablers. Two major categories of enablers were identified by the researchers: resilience and communication. Individual's intrinsic strength, their coping strategies, and receipt of support improved participant's resilience and consequently supported a positive experience. Communication methods and an effective patient-provider relationship facilitated positive experiences for participants. Despite potential barriers to access of care for Indigenous cancer patients, participants in the study demonstrated that it was still possible to focus on the positive aspects of their cancer experiences. Many participants explained how cancer changed their outlook on life, often for the better, with many feeling empowered as they progressed through their cancer diagnosis and treatment processes.

Identification of Australian Aboriginal and Torres Strait Islander Cancer Patients in the Primary Health Care Setting.

BACKGROUND: Aboriginal and Torres Strait Islander Australians have poorer cancer outcomes and experience 30% higher mortality rates compared to non-Indigenous Australians. Primary health care (PHC) services are increasingly being recognized as pivotal in improving Indigenous cancer patient outcomes. It is currently unknown whether patient information systems and practices in PHC settings accurately record Indigenous and cancer status. Being able to identify Indigenous cancer patients accessing services in PHC settings is the first step in improving outcomes. METHODS: Aboriginal Medical Centres, mainstream (non-Indigenous specific), and government-operated centers in Queensland were contacted and data were collected by telephone during the period from 2014 to 2016. Participants were asked to (i) identify the number of patients diagnosed with cancer attending the service in the previous year; (ii) identify the Indigenous status of these patients and if this information was available; and (iii) advise how this information was obtained. RESULTS: Ten primary health care centers (PHCCs) across Queensland participated in this study. Four centers were located in regional areas, three in remote areas and three in major cities. All participating centers reported ability to identify Indigenous cancer patients attending their service and utilizing electronic Patient Care Information Systems (PCIS) to manage their records; however, not all centers were able to identify Indigenous cancer patients in this way. Indigenous cancer patients were identified by PHCCs using PCIS (n = 8), searching paper records (n = 1), and combination of PCIS and staff recall (n = 1). Six different types of PCIS were being utilized by participating centers. There was no standardized way to identify Indigenous cancer patients across centers. Health service information systems, search functions and capacities of systems, and staff skill in extracting data using PCIS varied between centers. CONCLUSION: It is crucial to be able to easily identify Indigenous cancer patients accessing health services in the PHC setting to monitor progress, improve and evaluate care, and ultimately improve Indigenous cancer outcomes. It is also important for PHC staff to receive adequate training and support to utilize PCISs efficiently and effectively.

The role of the GP in follow-up cancer care: a systematic literature review.

PURPOSE: The purpose of the present study is to explore the role of the general practitioners, family physicians and primary care physicians (GP) in the provision of follow-up cancer care. METHODS: PubMed, MEDLINE and CINAHL were systematically searched for primary research focussing on the role of the GP from the perspective of GPs and patients. Data were extracted using a standardised form and synthesised using a qualitative descriptive approach. RESULTS: The initial search generated 6487 articles: 25 quantitative and 33 qualitative articles were included. Articles focused on patients' and GPs' perspectives of the GP role in follow-up cancer care. Some studies reported on the current role of the GP, barriers and enablers to GP involvement from the perspective of the GP and suggestions for future GP roles. Variations in guidelines and practice of follow-up cancer care in the primary health care sector exist. However, GPs and patients across the included studies supported a greater GP role in follow-up cancer care. This included greater support for care coordination, screening, diagnosis and management of physical and psychological effects of cancer and its treatment, symptom and pain relief, health promotion, palliative care and continuing normal general health care provision. CONCLUSION: While there are variations in guidelines and practice of follow-up cancer care in the primary health care sector, GPs and patients across the reviewed studies supported a greater role by the GP. IMPLICATIONS FOR CANCER SURVIVORS: Greater GP role in cancer care could improve the quality of patient care for cancer survivors. Better communication between the tertiary sector and GP across the cancer phases would enable clear delineation of roles.

Uptake of influenza vaccination in pregnancy amongst Australian Aboriginal and Torres Strait Islander women: a mixed-methods pilot study.

BACKGROUND: Influenza infection during pregnancy causes significant morbidity and mortality. Immunisation against influenza is recommended during pregnancy in several countries however, there are limited data on vaccine uptake, and the determinants of vaccination, in pregnant Australian Aboriginal and/or Torres Islander women. This study aimed to collect pilot data on vaccine uptake and attitudes towards, and perceptions of, maternal influenza vaccination in this population in order to inform the development of larger studies. METHODS: A mixed-methods study comprised of a cross-sectional survey and yarning circles (focus groups) amongst Aboriginal and Torres Strait Islander women attending two primary health care services. The women were between 28 weeks gestation and less than 16 weeks post-birth. These data were supplemented by data collected in an ongoing national Australian study of maternal influenza vaccination. Aboriginal research officers collected community data and data from the yarning circles which were based on a narrative enquiry framework. Descriptive statistics were used to analyse quantitative data and thematic analyses were applied to qualitative data. RESULTS: Quantitative data were available for 53 women and seven of these women participated in the yarning circles. The proportion of women who reported receipt of an influenza vaccine during their pregnancy was 9/53. Less than half of the participants (21/53) reported they had been offered the vaccine in pregnancy. Forty-three percent reported they would get a vaccine if they became pregnant again. Qualitative data suggested perceived benefits to themselves and their infants were important factors in the decision to be vaccinated but there was insufficient information available to women to make that choice. CONCLUSIONS: The rates of influenza immunisation may continue to remain low for Aboriginal and/or Torres Strait Islander women during pregnancy. Access to services and recommendations by a health care worker may be factors in the lower rates. Our findings support the need for larger studies directed at monitoring and understanding the determinants of maternal influenza vaccine uptake during pregnancy in Australian Aboriginal and Torres Strait Islander women. This research will best be achieved using methods that account for the social and cultural contexts of Aboriginal and Torres Strait Islander communities in Australia.

International variations in childhood cancer in indigenous populations: a systematic review.

Although the cancer burden in indigenous children has been reported in some countries, up to now, no international comparison has been made. We therefore aimed to assess the available evidence of the burden of childhood cancer in indigenous populations. We did a systematic review of reports on cancer incidence, mortality, and survival in indigenous children worldwide. Our findings highlight the paucity of accessible information and advocate the pressing need for data by indigenous status in countries where population-based cancer registries are established. The true extent of disparities between the burden in the indigenous community needs to be measured so that targeted programmes for cancer control can be planned and implemented.

How people construct their experience of living with secondary lymphoedema in the context of their everyday lives in Australia.

PURPOSE: The purpose of this work was to explore how men and women construct their experiences living with lymphoedema following treatment for any cancer in the context of everyday life. METHODS: The design and conduct of this qualitative study was guided by Charmaz' social constructivist grounded theory. To collect data, focus groups and telephone interviews were conducted. Audiotapes were transcribed verbatim and imported into NVivo8 to organize data and codes. Data were analyzed using key grounded theory principles of constant comparison, data saturation, and initial, focused, and theoretical coding. RESULTS: Participants were 3 men and 26 women who had developed upper- or lower-limb lymphoedema following cancer treatment. Three conceptual categories were developed during data analysis and were labeled "accidental journey," "altered normalcy," and "ebb and flow of control." "Altered normalcy" reflects the physical and psychosocial consequences of lymphoedema and its relationship to everyday life. "Accidental journey" explains the participants' experiences with the health care system, including the prevention, treatment, and management of their lymphoedema. "Ebb and flow of control" draws upon a range of individual and social elements that influenced the participants' perceived control over lymphoedema. These conceptual categories were interrelated and contributed to the core category of "sense of self," which describes their perceptions of their identity and roles. CONCLUSIONS: Results highlight the need for greater clinical and public awareness of lymphoedema as a chronic condition requiring prevention and treatment, and one that has far-reaching effects on physical and psychosocial well-being as well as overall quality of life.