Better cardiac care - the patient experience - a qualitative study.

BACKGROUND: In 2015, a Brisbane tertiary hospital's cardiac unit implemented a new model of multidisciplinary care (Better Cardiac Care (BCC)) for Aboriginal and Torres Strait Islander patients. Since then, clinical indicators for Aboriginal and Torres Strait Islander cardiac patients have improved, but the recipients' voices have not been heard. This research aimed to determine the acceptability and appropriateness, features of value, and opportunities for improvements in this model of care, from the perspective of patients and their family members. METHODS: This descriptive qualitative study employed a narrative methodology. BCC Health Workers contacted prospective participants; with consent, interested individuals were then contacted by the Aboriginal Research Officer (RO) who arranged yarning sessions and consent. Family members were also invited to share their stories of their loved ones' hospitalisation. Two researchers conducted the interviews, using a yarning approach. Inductive narrative analysis, informed by Aboriginal and Torres Strait Islander ways of Being, Knowing, and Doing, focused on enabling participants' stories to be heard and understood from their perspectives. RESULTS: Relationality was at the heart of the BCC model of care, particularly between patients and Aboriginal and Torres Strait Islander staff. The relationality included a responsibility for holistic care, extending beyond hospital discharge, although support and handover for family members required improvement. The Aboriginal and Torres Strait Islander staff understood the contextual and structural challenges faced by participants, including the disempowerment and racism experienced in healthcare. This understanding was shared with the BCC team who, in turn, protected, advocated for, and holistically supported participants through their cardiac health journeys. CONCLUSIONS: Empowering (and employing) Aboriginal and Torres Strait Islander staff, and relating to patients as people, enabled BCC to meet Aboriginal and Torres Strait Islander patient's needs and improve outcomes. The wider health system and health academia could benefit from exploring and valuing Aboriginal and Torres Strait Islander discourses of relationality.

Quantitative evaluation of an outreach case management model of care for urban Aboriginal and Torres Strait Islander adults living with complex chronic disease: a longitudinal study.

BACKGROUND: Chronic diseases are the leading contributor to the excess morbidity and mortality burden experienced by Aboriginal and Torres Strait Islander (hereafter, respectfully, Indigenous) people, compared to their non-Indigenous counterparts. The Home-based Outreach case Management of chronic disease Exploratory (HOME) Study provided person-centred, multidisciplinary care for Indigenous people with chronic disease. This model of care, aligned to Indigenous peoples' conceptions of health and wellbeing, was integrated within an urban Indigenous primary health care service. We aimed to determine the impact of this model of care on participants' health and wellbeing at 12 months. METHODS: HOME Study participants were Indigenous, regular patients of the primary health care service, with a diagnosis of at least one chronic disease, and complex health and social care needs. Data were collected directly from participants and from their medical records at baseline, and 3, 6 and 12 months thereafter. Variables included self-rated health status, depression, utilisation of health services, and key clinical outcomes. Participants' baseline characteristics were described using frequencies and percentages. Generalized estimating equation (GEE) models were employed to evaluate participant attrition and changes in outcome measures over time. RESULTS: 60 participants were enrolled into the study and 37 (62%) completed the 12-month assessment. After receiving outreach case management for 12 months, 73% of participants had good, very good or excellent self-rated health status compared with 33% at baseline (p < 0.001) and 19% of participants had depression compared with 44% at baseline (p = 0.03). Significant increases in appointments with allied health professionals (p < 0.001) and medical specialists other than general practitioners (p = 0.001) were observed at 12-months compared with baseline rates. Mean systolic blood pressure decreased over time (p = 0.02), but there were no significant changes in mean HbA1c, body mass index, or diastolic blood pressure. CONCLUSIONS: The HOME Study model of care was predicated on a holistic conception of health and aimed to address participants' health and social care needs. The positive changes in self-rated health and rates of depression evinced that this aim was met, and that participants received the necessary care to support and improve their health and wellbeing.

A mixed methods exploratory study tackling smoking during pregnancy in an urban Aboriginal and Torres Strait Islander primary health care service.

BACKGROUND: Pregnancy can be a time of joy and a time of significant stress. For many Aboriginal and Torres Strait Islander (hereafter, respectfully, Indigenous) women, cigarette smoking, even during pregnancy, is a socially sanctioned behavioural response to stress. Indigenous women smoke during pregnancy at higher rates than their non-Indigenous counterparts. METHODS: A mixed methods, exploratory study, undertaken in an urban, Indigenous primary health care service, tested the impact and acceptability of a smoking cessation intervention for women pregnant with an Indigenous baby, their significant other (SO), and their primary health care service. The intervention included case management, incentivised smoking cessation support and culturally-based art activities. RESULTS: Thirty-one pregnant women and 16 SOs participated. Nearly half attempted to quit at least once during the study, 36% (4/11) of pregnant women had quit at the 3 month assessment and two remained smoke free 1 month postpartum. Most participants self-reported a reduction in tobacco smoking. Exhaled CO confirmed this for SOs (mean reduction - 2.2 ppm/assessment wave, 95% CI: -4.0, - 0.4 ppm/assessment wave, p = 0.015) but not for pregnant women. Many participants experienced social and economic vulnerabilities, including housing and financial insecurity and physical safety concerns. CONCLUSIONS: Tobacco smoking is normalised and socially sanctioned in Indigenous communities and smoking is frequently a response to the multitude of stressors and challenges that Indigenous people experience on a daily basis. Smoking cessation interventions for pregnant Indigenous women must be cognisant of the realities of their private lives where the smoking occurs, in addition to the impact of the broader societal context. Narrow definitions of success focussing only on smoking cessation ignore the psychological benefit of empowering women and facilitating positive changes in smoking behaviours. Our smoking cessation intervention supported pregnant women and their SOs to manage these stressors and challenges, thereby enabling them to develop a solid foundation from which they could address their smoking. A broad definition of success in this space is required: one that celebrates positive smoking behaviour changes in addition to cessation.

Investigating the feasibility, acceptability and appropriateness of outreach case management in an urban Aboriginal and Torres Strait Islander primary health care service: a mixed methods exploratory study.

BACKGROUND: The disparities in health and life expectancy of Aboriginal and Torres Strait Islander peoples compared to non-Indigenous Australians are well documented. Chronic diseases are a leading contributor to these disparities. We aimed to determine the feasibility, acceptability and appropriateness of a case management approach to chronic disease care integrated within an urban Aboriginal and Torres Strait Islander primary health care service. METHODS: The Home-based, Outreach case Management of chronic disease Exploratory (HOME) Study provided holistic, patient centred multidisciplinary care for Aboriginal and Torres Strait Islander people with chronic disease. A developmental evaluation approach supported the implementation and ongoing adaptations in the delivery of the model of care, and ensured its alignment with Aboriginal and Torres Strait Islander peoples' understandings of, and approaches to, health and wellbeing. In-depth, semi-structured interviews were conducted with nine patient participants (one interview also included a participant's spouse) and 15 health service staff and key themes were identified through an iterative reflective process. Quantitative data were collected directly from patient participants and from their medical records at baseline, 3 and 6 months. Patient participants' baseline characteristics were described using frequencies and percentages. Attrition and patterns of missing values over time were evaluated using binomial generalized estimating equation (GEE) models and mean differences in key clinical outcomes were determined using normal GEE models. RESULTS: Forty-one patients were recruited and nine withdrew over the 6 month period. There was no evidence of differential attrition. All participants (patients and health service staff) were very positive about the model of care. Patient participants became more involved in their health care, depression rates significantly decreased (p = 0.03), and significant improvements in systolic blood pressure (p < 0.001) and diabetes control (p = 0.05) were achieved. CONCLUSIONS: The exploratory nature of our study preclude any definitive statements about the effectiveness of our model of care. However, staff and patients' high levels of satisfaction and improvements in the health and wellbeing of patients are promising and suggest its feasibility, acceptability and appropriateness. Further research is required to determine its efficacy, effectiveness and cost-effectiveness in improving the quality of life and quality of care for Aboriginal and Torres Strait Islander peoples living with chronic disease.

The Benefits of Cooperative Inquiry in Health Services Research: Lessons from an Australian Aboriginal and Torres Strait Islander Health Study.

Health services research is underpinned by partnerships between researchers and health services. Partnership-based research is increasingly needed to deal with the uncertainty of global pandemics, climate change induced severe weather events, and other disruptions. To date there is very little data on what has happened to health services research during the COVID-19 pandemic. This paper describes the establishment of an Australian multistate Decolonising Practice research project and charts its adaptation in the face of disruptions. The project used cooperative inquiry method, where partner health services contribute as coresearchers. When the COVID-19 pandemic hit, data collection needed to be immediately paused, and when restrictions started to lift, all research plans had to be renegotiated with services. Adapting the research surfaced health service, university, and staffing considerations. Our experience suggests that cooperative inquiry was invaluable in successfully navigating this uncertainty and negotiating the continuance of the research. Flexible, participatory methods such as cooperative inquiry will continue to be vital for successful health services research predicated on partnerships between researchers and health services into the future. They are also crucial for understanding local context and health services priorities and ways of working, and for decolonising Indigenous health research.

"Our Mothers Have Handed That to Us. Her Mother Has Handed That to Her": Urban Aboriginal and Torres Strait Islander Yarning about Community Wellbeing, Healthy Pregnancies, and the Prevention of Fetal Alcohol Spectrum Disorder.

In Australia, fetal alcohol spectrum disorder (FASD) is a largely hidden disability that is currently under-recognized, under-resourced, and under- or misdiagnosed. Unsurprisingly, efforts to prevent FASD in urban Aboriginal and Torres Strait Islander communities are lacking. Further, mainstream approaches are not compatible with diverse and distinct Aboriginal and Torres Strait Islander ways of approaching family, pregnancy, and parenting life. To support the creation of culturally appropriate urban Aboriginal and Torres Strait Islander FASD prevention strategies, we sought to understand local perspectives, experiences, and priorities for supporting healthy and alcohol-free pregnancies. Using a narrative methodology, we undertook research yarns with eight female and two male community participants. Data were analyzed using a narrative, thematic analysis and guided by an Indigenist research practice of reflexive listening. Participant yarns provided important insights into local urban Aboriginal and Torres Strait Islander cultural, social, and structural determinants that support family and child health, alcohol-free pregnancies, and the prevention of FASD. The results provide critical guidance for Indigenizing and decolonizing FASD prevention strategies to support culturally safe, relevant, and strengths-based services. This approach has critical implications for all health and social professionals and can contribute to Aboriginal and Torres Strait Islander peoples' justice, recovery, and healing from colonization.

'The Drug Survey App': a protocol for developing and validating an interactive population survey tool for drug use among Aboriginal and Torres Strait Islander Australians.

BACKGROUND: Disadvantage and transgenerational trauma contribute to Aboriginal and Torres Strait Islander (Indigenous) Australians being more likely to experience adverse health consequences from alcohol and other drug use than non-Indigenous peoples. Addressing these health inequities requires local monitoring of alcohol and other drug use. While culturally appropriate methods for measuring drinking patterns among Indigenous Australians have been established, no similar methods are available for measuring other drug use patterns (amount and frequency of consumption). This paper describes a protocol for creating and validating a tablet-based survey for alcohol and other drugs ("The Drug Survey App"). METHODS: The Drug Survey App will be co-designed with stakeholders including Indigenous Australian health professionals, addiction specialists, community leaders, and researchers. The App will allow participants to describe their drug use flexibly with an interactive, visual interface. The validity of estimated consumption patterns, and risk assessments will be tested against those made in clinical interviews conducted by Indigenous Australian health professionals. We will then trial the App as a population survey tool by using the App to determine the prevalence of substance use in two Indigenous communities. DISCUSSION: The App could empower Indigenous Australian communities to conduct independent research that informs local prevention and treatment efforts.

"The Problem Is that We Hear a Bit of Everything ": A Qualitative Systematic Review of Factors Associated with Alcohol Use, Reduction, and Abstinence in Pregnancy.

Understanding the factors that contribute to women's alcohol use in pregnancy is critical to supporting women's health and wellness and preventing Fetal Alcohol Spectrum Disorder. A systematic review of qualitative studies involving pregnant and recently postpartum women was undertaken to understand the barriers and facilitators that influence alcohol use in pregnancy (PROSPERO: CRD42018098831). Twenty-seven (n = 27) articles were identified through EMBASE, CINAHL, PsycINFO, PubMed and Web of Science. The included articles were thematically analyzed using NVivo12. The analysis was informed by Canada's Action Framework for Building an Inclusive Health System to articulate the ways in which stigma and related barriers are enacted at the individual, interpersonal, institutional and population levels. Five themes impacting women's alcohol use, abstention and reduction were identified: (1) social relationships and norms; (2) stigma; (3) trauma and other stressors; (4) alcohol information and messaging; and (5) access to trusted equitable care and essential resources. The impact of structural and systemic factors on prenatal alcohol use was largely absent in the included studies, instead focusing on individual choice. This silence risks perpetuating stigma and highlights the criticality of addressing intersecting structural and systemic factors in supporting maternal and fetal health.

"They Were Willing to Work with Me and Not Pressure Me": A Qualitative Investigation into the Features of Value of a Smoking Cessation in Pregnancy Program for Aboriginal and Torres Strait Islander Women.

With tobacco commonly used for stress relief, smoking cessation during pregnancy can present challenges for women facing stressful circumstances. This can be pronounced for Aboriginal and Torres Strait Islander women who experience disproportionately high smoking rates during pregnancy and also have a greater intersection of stressors from social disadvantage, institutional racism and trauma. To contribute understandings into how women can be best supported at this time, this study identified the features of value of an Aboriginal and Torres Strait Islander pregnancy smoking cessation program that addressed the contexts of women's lives in culturally affirming and strength-based ways. A narrative methodology using a yarning approach was used to interview 7 pregnant women, 6 significant others, 3 case managers, and 4 healthcare professionals. Data were analyzed using thematic analysis, guided by an Indigenist research practice of deep and reflexive researcher listening. Features of value included: relationship-based care, holistic wraparound care, flexibility, individualized care, and culturally orientated care. Combined, they enabled highly relevant and responsive women-centered, trauma-informed, and harm-reducing smoking cessation support that was well received by participants, who achieved promising smoking changes, including cessation. This approach strongly departs from standard practices and provides a blueprint for meaningful support for pregnant women experiencing vulnerabilities.