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Aboriginal Australians experience a high prevalence of chronic obstructive pulmonary disease (COPD), with high rates of potentially preventable hospitalisations. However, little is known about Aboriginal peoples' experiences of living with COPD and how they navigate health care systems. This study used thematic analysis and Aboriginal methodology to explore Aboriginal peoples' lived experiences of COPD, their health care journey from receiving a diagnosis of COPD to the clinical management, and the impact of COPD on their daily lives. We conducted in-depth semi-structured interviews over a 6-month period with 18 Aboriginal adults diagnosed with COPD from four Aboriginal Community Controlled Health Services (ACCHS) in New South Wales, Australia. Reflexive thematic analysis was employed to ensure rigour. The findings revealed deeply personal and reflective stories shaped by historical, social, and cultural realities of Aboriginal peoples living with COPD. Four themes were identified characterising their experiences. Based on the findings, the following guidance is provided on future COPD care for Aboriginal peoples: Better alignment of existing COPD management with Aboriginal peoples' cultural contexts and perspectives to improve access to culturally safe care; Increased funding for ACCHS to enhance COPD management, such as early detection through case finding and access to ACCHS-led pulmonary rehabilitation; Engaging family members in COPD management and providing culturally centred COPD education that facilitates discussions and builds health literacy and self-management skills; Implementing health promotion initiatives to increase awareness and counteract fear and shame to improve early COPD detection.
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BACKGROUND: Despite the high incidence of chronic obstructive pulmonary disease (COPD) in Aboriginal communities in Australia, Aboriginal Health Workers (AHWs) have limited knowledge about effective management. AIM: To evaluate an online education program, co-designed with AHWs and exercise physiologists (EPs) or physiotherapists (PTs), to increase knowledge about COPD and its management. METHODS: AHWs and EPs from four Aboriginal Community Controlled Health Services (ACCHS) were recruited. An Aboriginal researcher and a physiotherapist experienced in COPD management and pulmonary rehabilitation (PR) delivered seven online education sessions. These sessions used co-design principles and an Aboriginal pedagogy framework '8 Ways of learning', which incorporates Aboriginal protocols and perspectives to realign teaching techniques and strengthen learning outcomes. Topics covered were: How the lungs work; What is COPD; Medications and how to use inhalers and COPD Action Plans; Why exercise is important; Managing breathlessness; Healthy eating; Managing anxiety and depression. After each session, AHWs with support from EPs, co-designed education 'yarning' resources using Aboriginal ways of learning to ensure topics were culturally safe for the local Aboriginal community and practiced delivering this at the following session. At the end of the program participants completed an anonymous online survey (5-point Likert scale) to assess satisfaction, and a semi-structured interview about their experience of the online education. RESULTS: Of the 12 participants, 11 completed the survey (7 AHWs, 4 EPs). Most (90%) participants strongly agreed or agreed that the online sessions increased knowledge and skills they needed to support Aboriginal patients with COPD. All (100%) participants felt: their cultural perspectives and opinions were valued and that they were encouraged to include cultural knowledge. Most (91%) reported that delivering their own co-designed yarning scripts during the online sessions improved their understanding of the topics. Eleven participants completed semi-structured interviews about participating in online education to co-design Aboriginal 'yarning' resources. Themes identified were: revealing the Aboriginal lung health landscape; participating in online learning; structuring the online education sessions; co-designing with the facilitators. CONCLUSIONS: Online education using co-design and 8 Ways of learning was rated highly by AHWs and EPs for improving COPD knowledge and valuing cultural perspectives. The use of co-design principles supported the cultural adaptation of COPD resources for Aboriginal people with COPD. TRIAL REGISTRATION: PROSPERO (registration number: CRD42019111405).
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Serviços de Saúde do Indígena , Pneumopatias , Doença Pulmonar Obstrutiva Crônica , Humanos , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Pneumopatias/terapia , Doença Pulmonar Obstrutiva Crônica/terapia , Educação de Pacientes como AssuntoRESUMO
BACKGROUND: Strong evidence exists for the benefits of pulmonary rehabilitation (PR) for people with chronic obstructive pulmonary disease (COPD), however the availability of culturally safe PR for Aboriginal and Torres Strait Islander (Indigenous) Peoples is limited. The study aims to determine whether PR can be implemented within Aboriginal Community Controlled Health Services (ACCHS) to improve outcomes for Indigenous people with COPD. METHODS: Multi-centre cohort study using participatory action research guided by the Knowledge-to-Action Framework. ACCHS supportive of enhancing services for chronic lung disease will be recruited. Aboriginal Health Workers (AHW) and the exercise physiologist (EP) or physiotherapist (PT) within these ACCHS will attend a workshop aimed at increasing knowledge and skills related to management of COPD and the provision of PR. Indigenous people with COPD will be invited to attend an 8-week, twice weekly, supervised PR program. OUTCOMES: AHW, EP/PT knowledge, skills and confidence in the assessment and management of COPD will be measured before and immediately after the BE WELL workshop and at 3, 6 and 12 months using a survey. PR participant measures will be exercise capacity (6-minute walk test (6MWT), health-related quality of life and health status at commencement and completion of an 8-week PR program. Secondary outcomes will include: number, length and cost of hospitalisations for a COPD exacerbation in 12-months prior and 12-months post PR; local contextual factors influencing implementation of PR; specific respiratory services provided by ACCHS to manage COPD prior to project commencement and at project completion. Repeated measures ANOVA will be used to evaluate changes in knowledge and confidence over time of AHWs and EP/PTs. Paired t-tests will be used to evaluate change in patient outcomes from pre- to post-PR. Number of hospital admissions in the 12 months before and after the PR will be compared using unpaired t-tests. DISCUSSION: Pulmonary rehabilitation is an essential component of best-practice management of COPD and is recommended in COPD guidelines. Indigenous peoples have limited access to culturally safe PR programs. This study will evaluate whether PR can be implemented within ACCHS and improve outcomes for Indigenous people with COPD. Trial registration Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12617001337369, Registered 2nd September 2017 https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373585&isClinicalTrial=False.
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Serviços de Saúde do Indígena , Doença Pulmonar Obstrutiva Crônica , Austrália , Estudos de Coortes , Gerenciamento Clínico , Humanos , Pulmão , Havaiano Nativo ou Outro Ilhéu do Pacífico , Doença Pulmonar Obstrutiva Crônica/reabilitação , Qualidade de VidaRESUMO
Indigenous peoples in Australia, New Zealand, Canada, and the United States of America (USA) have a higher burden of chronic lung disease than non-Indigenous people. Exercised-based interventions, such as pulmonary rehabilitation, are highly effective to manage chronic lung disease. The outcomes of these interventions for Indigenous people require evaluation. The aim of this review was to critically appraise the literature on the impact of exercise-based interventions on quality of life, exercise capacity and health care utilisation in Indigenous adults with chronic lung disease in Australia, New Zealand, Canada, and USA. The Cochrane Library, Medline, Embase, CINAHL, Scopus, Psychinfo, APAIS-Aboriginal Health and PEDro databases were searched for peer-reviewed and grey literature that evaluated exercise-based interventions, such as pulmonary rehabilitation for Indigenous adults with chronic lung disease in Australia, New Zealand, Canada, and USA. Two authors independently screened and reviewed titles and abstract and full texts of potentially eligible studies for inclusion. An Indigenous decolonisation methodological framework was also applied to evaluate Indigenous governance, involvement, and engagement in the studies. A total of 3,598 records were screened, nine full papers were reviewed, and one was study included, which was a cardiopulmonary rehabilitation program for Indigenous people in Australia. Participants with chronic respiratory or heart disease significantly improved functional exercise capacity and quality of life [six-minute walk distance mean change (95% CI) 79 metres (47 to 111); Chronic Respiratory Questionnaire Dyspnoea 0.9 points (0.2 to 1.5)]. Several items of the decolonisation framework were addressed. Only one study was able to be included in the review, highlighting the paucity of research about culturally safe exercise-based interventions for Indigenous adults with chronic lung disease. There is a need for further research with strong Indigenous governance, involvement, and engagement.