Understanding how individual, family and societal influences impact on Indigenous women’s health and wellbeing

Introduction This PhD study explores issues of stress, psychosocial health and chronic disease (CD) affecting Indigenous Australian women. It seeks to understand the impact of the roles and responsibilities Indigenous women have in their families and communities on their ability to manage their own health. Background In relation to the social determinants of health, Indigenous Australian women are the most socially and economically disadvantaged women in Australia. They face considerable disparity in relation to their health and wellbeing compared to other women in Australia. Indigenous Australian women are predominantly the sole care providers for close family members and are called upon to support family and community members through extended kinship networks. These women often experience limited educational and employment opportunities as a consequence. Women with such limited opportunities often face a lifelong trajectory of inadequate housing, reduced access to services and poverty. Under these circumstances, Indigenous Australian women suffer a heavy burden of CD and ill-health. Premature mortality due to diabetes, chronic kidney disease (CKD) and cardiovascular disease (CVD) contributes significantly to the gap in life expectancy (LE) for Indigenous women in Australia. Despite the reality of the lived experiences of Indigenous women, positive stories of resilience, strength and outstanding leadership exist throughout the country. These stories are not only remarkable success stories in their own right, they are even more remarkable given that these stories of success and resilience were achieved within a society that had at its structural core, seemingly insurmountable impediments, often present from birth. For example, such impediments saw the author taken home to a tent on the outskirts of town from the hospital following her birth; and until the age of three, she was not counted as a person or citizen of this country. Laws such as the various Aboriginal Protectionist Acts that were in force across Australia from 1838 to the 1970s, reinforced oppression and thwarted the aspirations of many Aboriginal people (Sherwood, 2013). This reality continues to impact on Indigenous people today. As recent as 1980, the author’s own aspirations to become a nurse were seriously eroded by career guidance officers who enthusiastically promoted early school departure and a career as a hospital domestic and cleaner instead of directing her towards further education or a professional career in health. A particularly important focus of this thesis is the research study involving interviews with 72 Australian Indigenous women from four Aboriginal health services in Australia about their roles and responsibilities to their family and community. The author listened to stories of strength, resilience and cohesiveness underpinned by pride and a strong sense of identity and belonging. These women shared how they juggled hectic workplace responsibilities, with having to provide care and support for extended family. This was both a strongly positive factor in their lives, yet the research will also explore the potential impact of their caring roles upon their own health and wellbeing. Methods This study reviewed the published evidence exploring the impact on Indigenous women of living with a CD, and reports on the burden of stress and psychosocial issues for Indigenous women. A systematic review examined intervention programs to address CD and mental health. This review was focused on issues as they affected Indigenous women and highlighted interventions occurring within Aboriginal Medical Services (AMS). Findings from two qualitative research projects are reported. In-depth interviews were undertaken with 21 Indigenous men and women and their healthcare providers as part of the process evaluation accompanying the Kanyini-GAP clinical trial, which aimed to improve health outcomes for people with high cardiovascular risk. In-depth qualitative interviews were also undertaken with 72 Indigenous women from four AMS around Australia to explore their experiences of living with CD and seeking to understand the factors that impacted on their ability to manage their own health. Research findings A review of the literature outlined the historical, social and economic factors that impact on Indigenous women’s health. These social determinants result in a greater incidence and prevalence of CD and premature death. The review also explored the heavy burden of psychosocial stress faced by Indigenous women. A systematic review explored evidence regarding programs addressing CD and mental health or social and emotional wellbeing (SEWB) for Indigenous people. We found a lack of high quality intervention studies, with poor delineation of key outcome measures and indicators of success, and a strong potential for bias in the reporting of results. We were unable to determine the efficacy, cost-effectiveness, or the potential for using programs beyond the original research setting. The in-depth interviews of women from four AMS explored the roles and responsibilities that Indigenous women have in their family and community, and if these roles and responsibilities impacted on the women managing their CD. Women took on significant roles and responsibilities within extended family networks. These responsibilities affected the study participants’ wellbeing and management of their CD was also affected by additional factors such as the incarceration of family members. The heavy burden of CD on the individual, family and wider community was highlighted. The impact of domestic violence is also highlighted, as was the grief related to repeated accounts of death and family members dying. Protective factors that promoted resilience included family support, cultural identity and belonging, education and health service access. The impact upon the author as an Aboriginal woman undertaking this research and the potential for Indigenous researchers to suffer vicarious trauma (VT) through conducting such research is discussed in Chapter 6. Implications of the research The findings presented in this thesis have implications for service delivery, resource allocation and policy development. For Indigenous women to be better able to manage their own health, to support earlier presentation with illness, health maintenance, improved self-management and enhanced quality of life, the extended family and community caring responsibilities of these women need to be taken into account. Better resources to support new mothers, culturally appropriate safe houses for women fleeing family and domestic violence, and flexible models of service delivery to more communities to better accommodate the competing demands placed upon Indigenous women are required to bring about improvements in health and wellbeing

The impact of Vicarious Trauma on Indigenous health researchers

Objective(s): To describe and reflect on an Indigenous researcher’s experience of vicarious trauma arising from a qualitative study of Indigenous women with chronic disease. Design: In-depth semi-structured interviews with thematic analysis were under-taken to explore the psychosocial factors experienced by Indigenous women as they managed their chronic disease. As part of the research process, reflecting on the experience of an Indigenous research team member, an Indigenous woman’s standpoint theoretical approach was adopted to frame discussion of the potential impact of vicarious trauma. Setting: Interviews were conducted with participants from four Aboriginal Medical Services from urban, rural and remote Australia. Analysis of the interviews, and reflection regarding the researcher’s experiences, occurred within the context of a multi-disciplinary team. Participants: Participant selection for the interview study was purposive. Seventy-two participants were selected for this study. The duration of the study was two years and was undertaken between March and December 2014, and finalised in December 2016. Results: n exploring how Indigenous women managed their own health and wellbeing, compelling stories of trauma, domestic violence and generational incarceration were shared with the researcher. Hearing and re-living some of these overwhelming experiences left her feeling iisolated and distressed. These compelling stories contributed to her experience of vicarious trauma. Conclusion: When Indigenous researchers conduct research in Indigenous communities, we should monitor, prepare for and provide appropriate care and support to researchers to address the potential for vicarious trauma. These considerations are paramount if we are to build the capacity of Indigenous and non-Indigenous researchers to conduct Indigenous health research

Mice Transgenic for the Human Carcinoembryonic Antigen Gene Maintain Its Spatiotemporal Expression Pattern

The tumor marker carcinoembryonic antigen (CEA) is predominantly expressed in epithelial cells along the gastrointestinal tract and in a variety of adenocarcinomas. As a basis for investigating its in vivo regulation and for establishing an animal model for tumor immunotherapy, transgenic mice were generated with a 33-kilobase cosmid clone insert containing the complete human CEA gene and flanking sequences. CEA was found in the tongue, esophagus, stomach, small intestine, cecum, colon, and trachea and at low levels in the lung, testis, and uterus of adult mice of independent transgenic strains. CEA was first detected at day 10.5 of embryonic development (embryonic day 10.5) in primary trophoblast giant cells and was found in the developing gut, urethra, trachea, lung, and nucleus pulposus of the vertebral column from embryonic day 14.5 onwards. From embryonic day 16.5 CEA was also visible in the nasal mucosa and tongue. Because this spatiotemporal expression pattern correlates well with that known for humans, it follows that the transferred genomic region contains all of the regulatory elements required for the correct expression of CEA. Furthermore, although mice apparently lack an endogenous CEA gene, the entire repertoire of transcription factors necessary for correct expression of the CEA transgene is conserved between mice and humans. After tumor induction, these immunocompetent mice will serve as a model for optimizing various forms of immunotherapy, using CEA as a target antigen

Breaking the silence: Insights into the lived experiences of WA Aboriginal/LGBTIQ+ people: Community summary report 2021

The ‘Breaking the Silence’ research project is one of the first to focus on the unique experiences of Aboriginal and/or Torres Strait Islander LGBTIQ+ people living in Western Australia. Research focusing on the intersection of Indigeneity and gender/sexual diversity is severely lacking in Australia. This is the first survey to comprehensively capture the experiences of Aboriginal and Torres Strait Islander LGBTIQ+ Western Australians. Previously, major research pertaining to LGBTIQ+ Australians rarely just focused on Aboriginal and Torres Strait Islander same sex attracted or gender variant individuals (Bonson, 2017; Dudgeon, et. al., 2017; Growing Up Queer, 2014; Hill, et. al., 2021; Uink, et. al., 2020; Whitton, et. al, 2015). This summary report presents the key findings of a state-wide survey completed by Aboriginal and/or Torres Strait Islander people, living in Western Australia and identifying as LGBTIQ+. Findings about discrimination, homophobia and the ways in which participants are included and accepted within their own families and the wider community are presented. The report also provides a focus on the positive aspects of participants’ lives; including how they experience pride and inclusion and a sense of belonging to their Aboriginal and/or Torres Strait Islander and/or LGBTIQ+ communities. This summary report has important information for organisations that provide health and social support services to Aboriginal and Torres Strait Islander people who identify as LGBTIQ+, including the extent to which diverse health, social and emotional wellbeing; education and community services meet the needs of participants.This report also includes a section describing how the findings from the community compare and contrast with those of workers in a range of health, social support and education services from the first phase of the study. (See: “Breaking the Silence: Insights from WA Services Working with Aboriginal/ LGBTIQ+ People,”)

Breaking the silence: Insights from WA services working with Aboriginal/ LGBTIQ+ people: Organisations summary report 2021

The ‘Breaking the Silence’ research project is one of the first to focus on the unique experiences of Aboriginal and/or Torres Strait Islander LGBTIQ+ people living in Western Australia. The report presents the first phase of a twopart research project that explores how a range of health, social support and education organisations respond to the needs of Aboriginal and/or Torres Strait Islander people, living in Western Australia and identifying as LGBTIQ+. This report presents the findings of focus groups, interviews and surveys with staff employed within a range of organisations that work closely with Aboriginal and/or LGBTIQ+ individuals. The discussion explores the extent to which diverse health, social and emotional wellbeing, education and community services meet the needs of participants, how staff working in these organisations are supported and what else is needed to provide effective and responsive services for Aboriginal and/or Torres Strait Islander clients who also identify as LGBTIQ+. Please see the ’Breaking the Silence: Insights into the Lived Experiences of WA Aboriginal/LGBTIQ+ People, Community Summary Report’ on findings from a survey distributed to Aboriginal and/or Torres Strait Islander LGBTIQ+ in the community of Western Australia

Process evaluation of a primary healthcare validation study of a culturally adapted depression screening tool for use by Aboriginal and Torres Strait Islander people: study protocol

Process evaluations are conducted alongside research projects to identify the context, impact and consequences of research, determine whether it was conducted per protocol and to understand how, why and for whom an intervention is effective. We present a process evaluation protocol for the Getting it Right research project, which aims to determine validity of a culturally adapted depression screening tool for use by Aboriginal and Torres Strait Islander people. In this process evaluation, we aim to: (1) explore the context, impact and consequences of conducting Getting It Right, (2) explore primary healthcare staff and community representatives' experiences with the research project, (3) determine if it was conducted per protocol and (4) explore experiences with the depression screening tool, including perceptions about how it could be implemented into practice (if found to be valid). We also describe the partnerships established to conduct this process evaluation and how the national Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research is met. Realist and grounded theory approaches are used. Qualitative data include semistructured interviews with primary healthcare staff and community representatives involved with Getting it Right. Iterative data collection and analysis will inform a coding framework. Interviews will continue until saturation of themes is reached, or all participants are considered. Data will be triangulated against administrative data and patient feedback. An Aboriginal and Torres Strait Islander Advisory Group guides this research. Researchers will be blinded from validation data outcomes for as long as is feasible. The University of Sydney Human Research Ethics Committee, Aboriginal Health and Medical Research Council of New South Wales and six state ethics committees have approved this research. Findings will be submitted to academic journals and presented at conferences. ACTRN12614000705684. [Abstract copyright: © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Generating sustainable collective action: Models of community control and governance of alcohol supply in Indigenous minority populations

Restrictions on the supply of alcohol are amongst the most effective and cost effective interventions to address harmful use. However, despite international human rights bodies recognising that self determination must be pre-eminent in efforts to improve Indigenous health, little is known about the role of Indigenous communities in designing and implementing alcohol controls as well as the degree to which government resourcing and/or regulation is utilised. This commentary explores Australian examples of the governance models used to ensure Indigenous participation and leadership when developing regulatory interventions for alcohol control within communities. We identify four models of Indigenous governance: alcohol control interventions that were community conceived and implemented, government-facilitated community-led, community coalitions backed by government intervention and government initiated community partnerships. Each model is underpinned by specific governance arrangements which incorporate rules and processes that determine authority, accountability and Indigenous participation in decision-making. The aim of this paper is to benchmark these models of governance along a spectrum of community engagement beginning with forms of non-participation and ending with full citizen control. In addition, we put forward recommendations for governments at all levels to facilitate culturally acceptable and robust models of Indigenous governance that have the potential to improve health and social outcomes

'We're here to listen and help them as well': a qualitative study of staff and Indigenous patient perceptions about participating in social and emotional wellbeing research at primary healthcare services

Research can inform culturally-appropriate care to strengthen social and emotional wellbeing (SEWB) among Aboriginal and Torres Strait Islander (hereafter, the term 'Indigenous Peoples' is respectfully used and refers to all Aboriginal and/or Torres Strait Islander Peoples of Australia). We acknowledge the cultural diversity of Australia's Indigenous First Peoples and they do not represent a homogenous group.) (hereafter Indigenous) Peoples. We explore the perspectives of primary healthcare staff and Indigenous patients about their willingness to and experiences participating in SEWB research. Process evaluation using grounded theory approaches of Getting it Right: The validation study, a national validation designed Indigenous SEWB research project (N = 500). Primary healthcare staff (n = 36) and community members (n = 4) from nine of ten primary healthcare services involved with the research project completed qualitative semi-structured interviews. Interview data were triangulated with participant feedback (responses to structured questions and free-text feedback collected during Getting it Right), study administrative data (participant screening logs, communication logs, study protocol, deviation logs and ethics correspondence) and interviewer field notes. Three themes about staff, patient and community perspectives concerning research participation developed: (1) considering the needs, risk, preferences and impact of participation in research for staff, patients and community; (2) building staff confidence speaking to patients about research and SEWB problems and (3) patients speaking openly about their SEWB. Some staff described pressure to ensure patients had a positive experience with the research, to respond appropriately if patients became upset or SEWB problems were identified during interviews, or due to their dual role as community member and researcher. Patients and staff reported that patients were more likely to participate if they knew the staff outside of the service, especially staff with a shared cultural background, and they perceived SEWB as a community priority. Staff reported their skills speaking to patients about the research and SEWB improved during the research, which built their confidence. Contrary to staff preconceptions, staff and patients reported that many patients appreciated the opportunity to speak about their SEWB and contributing to research that may eventually enhance SEWB in their community. Our research project was considered acceptable by most staff and patients. The positive outcomes reported by staff and feedback from patients highlights the importance of providing opportunities for people to speak about their SEWB and for research-informed SEWB PHC care. Getting it Right is registered on ANZCTR12614000705684

Process evaluation of the Getting it Right study and acceptability and feasibility of screening for depression with the aPHQ-9

The Getting it Right study determined the validity, sensitivity, specificity and acceptability of the culturally adapted 9-item Patient Health Questionnaire (aPHQ-9) as a screening tool for depression in Aboriginal and Torres Strait Islander (hereafter referred to as Indigenous) people. In this process evaluation we aimed to explore staff perceptions about whether Getting it Right was conducted per protocol, and if the aPHQ-9 was considered an acceptable and feasible screening tool for depression in primary healthcare. This process evaluation will provide information for clinicians and policy makers about the experiences of staff and patients with Getting it Right and what they thought about using the aPHQ-9. Process evaluation using grounded theory approaches. Semi-structured interviews with primary healthcare staff from services participating in Getting it Right were triangulated with feedback (free-text and elicited) from participants collected during the validation study and field notes. Data were thematically analysed according to the Getting it Right study protocol to identify the acceptability and feasibility of the aPHQ-9. Primary healthcare staff (n = 36) and community members (n = 4) from nine of the ten participating Getting it Right services and Indigenous participants (n = 500) from the ten services that took part. Most staff reported that the research was conducted according to the study protocol. Staff from two services reported sometimes recruiting opportunistically (rather than recruiting consecutive patients attending the service as outlined in the main study protocol), when they spoke to patients who they knew from previous interactions, because they perceived their previous relationship may increase the likelihood of patients participating. All Getting it Right participants responded to at least six of the seven feedback questions and 20% provided free-text feedback. Most staff said they would use the aPHQ-9 and most participants said that the questions were easy to understand (87%), the response categories made sense (89%) and that they felt comfortable answering the questions (91%). Getting it Right was predominantly conducted according to the study protocol. The aPHQ-9, the first culturally adapted, nationally validated, freely available depression screening tool for use by Indigenous people, appears to be acceptable and feasible to use. Australian New Zealand Clinical Trial Registry ANZCTR12614000705684 , 03/07/2014

Factors that influence participation in self-management of wound care in three Indigenous communities in Western Australia: Clients' perspectives

The purpose of this study was to identify any barriers or enablers as influences on wound care self-management by Indigenous people. A qualitative, interpretive study sought to investigate how participants perceived their wounds and their general health, and to identify the influences on them accessing wound care services. There is a dearth of information on culturally appropriate practice in wound management for Indigenous Australians. This research project was therefore significant in attempting to bridge the gap in nursing knowledge of Indigenous clients' perceptions of barriers and enablers for seeking wound care services,especially in relation to lower leg ulcers. The lack of culturally sensitive wound management practices potentially impacts on Indigenous clients' behaviours in seeking treatment from their health service providers. Participant observations and semi-structured interviews with the research participants investigated the management of their wounds, and the ways in which their culture influences wound management. The main aim was to understand participants' comprehension of the importance of wound care through reflection. Understanding the enhancing or obstructive influences on wound management practices was expected to provide a foundation for teaching self care of wounds in Indigenous populations and inform health professionals' approach to health education. The data were analysed using thematic analysis, which generated common themes related to the research questions. These themes are: visibility, of the problem,4 perceived versus actual level of knowledge, acceptance of co-morbid health conditions and pre-determined path of ill health. These findings indicated that in one region, participants' perception of poor health was related to visibility of the problem. Participants chose to have their visible wounds managed by Silver Chain Nursing Association, whereas Diabetes and Hypertension and any other non-visible disorders were seen as appropriate to the Aboriginal Medical Service (AMS). Further to this finding, most participants displayed a sense of helplessness and hopelessness when sharing information about their diagnosis of diabetes, believing this was the norm. Many also believed that having a strong family history of a particular disease resulted in the participants also inheriting the disease. During post interview educational sessions many of the Indigenous participants were surprised by the evidence based-research reported to them by the researcher that diabetes is a manageable disease with life style changes. Another issue highlighted was the perceived level of knowledge the participants had about wound care. Reassurance was given by the participants that their level of knowledge about how to manage their wounds was adequate. However, none of the participants were concerned about the length of time that their wound/s had or were being managed, between 3 months and 5 years. This acceptance that although a wound is not getting any worse and not getting any better was the norm is cause for concern, and indicates a low level of health literacy. This theme was 'perceiving an imbalance in perceptions of wound care knowledge with actual knowledge'. The most important recommendation from the study findings is the need to consider health literacy more carefully in the development of health promotion and health education for Indigenous clients with wounds