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.

"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.

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.

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.

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.