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Table 2 Charting of Scoping Review Studies

From: What do you mean by engagement? – evaluating the use of community engagement in the design and implementation of chronic disease-based interventions for Indigenous populations – scoping review

Author, Year of Publication Study Location & Population Chronic Disease Study Design Intervention Methods Level of Community Engagement
Boyer et al. 2005 [18] USA- Alaska Natives Obesity, diabetes and CVD Cross-sectional study to investigate interactions between genetic & environmental risk factors contributing to excess body weight, diabetes and CVD Program for chronic disease and healthy behaviour education 1. Collect health and wellness data through interviews and self-administered questionnaires
2. Collect blood samples to test Cholestatic lipid levels and HbA1 levels for long-term glucose maintenance
3. All results were explained to participants when they checked out
Used participatory research model to engage with Alaskan Native villages. Follows model where researcher generates question based on evidence and then goes to community to evaluate if individuals share same goals as researchers. Specifically, met with local tribal councils to obtain study approval. Hired local bilingual (English and Yup’ik) research assistant to explain research to community members and conduct the study. Uses community leadership to develop capacity to address health issues. Created formative evaluative process where two external evaluators monitor study and prepare reports on progress to distribute to village.
Bradford et al, 2015 [19] Australia-
Indigenous Australians
CVD Qualitative co-design study to customize cardiac program for Indigenous People Cardiac rehab program with:
1. Home care with clinical portal and mentoring
2. Education via videos and motivational messaging
3. Smartphone app with health diary and education
1. Customized three main components of program (service delivery, education, app) by conducting workshops and interviews with healthcare providers CSIRO met with mayor and council of remote Aboriginal community and obtained local letter of support to conduct study. Team actively engaged with six relevant healthcare providers who specialized in cardiac and/or Indigenous health, as well as an Indigenous production company to adapt program. Provider interviews led to changes in service delivery of program and educational material (i.e. inclusion of mentors, culturally appropriate pop-up messages). Production company re-designed mobile app with Indigenous artwork and graphics to improve cultural appropriateness. Community members were not consulted to evaluate adapted program.
Chambers et al. 2015 [20] USA Diabetes Feasibility study evaluating use of a family-based, home-visiting diabetes prevention/ management intervention for AI youth with or at risk for type 2 diabetes Diabetes prevention/ management program with home-based lifestyle education and psychosocial support, facilitated referrals, and community-based healthy living activities 1. 9-month community needs assessment with advisory boards and steering committee of tribal, regional and national content experts. 21 round table discussions and 29 interviews conducted with AI youth
2. 12-month intervention phase (single group pre-post). Demographic, participant satisfaction and measures related to knowledge, behavioural and psychosocial outcomes collected
3. 6-month maintenance phase with monthly visits with youth and their support person
Indicated utilizes CBPR approach for design, implementation and evaluation of the study. Both stakeholders and AI youth were consulted for design of intervention features but were not consulted post-design. TOD program utilized 30-year trusted relationship with tribal communities to initiate intervention evaluation phase. During 12-month trial, youth were provided with home-based education on healthy living goals and diabetes prevention. Following the trial, monthly visits with AI youth were conducted to help sustain behaviors. Study claimed it would include participant satisfaction questionnaire to engage AI opinion, but no results are reported.
Ciccone et al. 2019 [21] Australia- Aboriginal Australians Stroke Pilot study using single case ABA design to test feasibility and acceptability of a rehabilitation program for Aboriginals with acquired communication disorders post-stroke Home-based rehabilitation program with therapy sessions with Aboriginal care worker 1. Eight Aboriginal participants were provided 24 treatment sessions over 12 weeks by a SLP and Aboriginal co-worker
2. Feasibility measured through the number of sessions conducted and participant attendance
3. Acceptability measured through participant post-therapy questionnaire and SLP semi-structured interview
Study utilized Aboriginal framework for research based on their previous Missing Voices study that involved extensive consultation with the Aboriginal Controlled Community Health Organization. Participants were asked to verbally provide their opinion on the key components of the therapy and to rate them on a 3-point scale. “Yarning” style interview was used, form of storytelling, to help improve dialogue between SLP and Aboriginal patient. As a result, participants indicated that having therapy at home created a better environment to obtain knowledge and continue discussions.
Clark et al., 2015 [22] Australia- Aboriginal and Torres Strait Islander Heart Failure Mixed-methods study to re-design existing HF educational resource to be culturally safe Fluid-Watchers- Pacific Rim HF education resource on an electronic tablet or computer 1. Phase 1 used action research methods to develop a culturally safe electronic resource to be provided to Aboriginal HF patients via a tablet computer
2. In Phase 2, the new resource was tested on a sample of Aboriginal HF patients to assess feasibility and acceptability. Patient knowledge, satisfaction and self-care behaviours were measured using a pre-post design with validated questionnaires.
Utilized various participatory methods in Phase 1 and 2 to adapt and evaluate program. In Phase 1, an HF expert panel adapted the existing resource to ensure it was evidence-based and contained appropriate images that reflect their culture. A stakeholder group composed of Aboriginal workers, HF patients, researchers and clinicians, then reviewed the resources, and changes were made accordingly (i.e. appropriate skin tone/voice, plain language). In Phase 2, Aboriginal HF patients were consulted to evaluate their satisfaction and self-care abilities with the tool.
Crengle et al, 2018 [23] Australia, Canada, New Zealand CVD Cross-country, multisite pre–post trial to assess the effect of a customized, medication health literacy program on medication knowledge Structured CVD health literacy program with:
1. Nurse led education session
2. Interactive tablet and information booklet
1. Three education sessions delivered over 1 month. Medication knowledge and health literacy skills were assessed before and after each session (pre-post). Study indicates the principal investigators in all three countries are Indigenous and all the researchers have pre-existing relationships with Indigenous communities. Communities were involved in all aspects of project including study design and implementation. Intervention was delivered by registered nurses who had received training in health literacy and adult education. An interactive tablet application was used during each session, which also produced a customised pill card for each participant. Information in the tablet and booklet was standardised across all countries, but background graphic design, images and Indigenous language words were country specific. Study categorized all Indigenous populations as facing similar risk factors and patterns of health inequities, did not consult patients post-session regarding their perspective on the intervention.
Davidson et al, 2008 [24] Australia- Aboriginal Australians CVD Mixed-methods prospective study assessing feasibility and acceptability of a collaborative model of cardiovascular education for Aboriginal Health Workers (AHWs) Education course regarding CVD care for AHWs with:
1. Group education course
2. Clinical education visits
1. Participants were required to complete two questionnaires developed by steering committee assessing knowledge and confidence with CVD pre-post course
2. Semi-structured interviews were conducted 1-month post course completion with all participants
The core course curriculum was based on the AHWs Heart Health Manual. Principles of action learning guided the sessions conduct, where AHWs worked together to complete assessments. AHWs were also encouraged to relate information to their workplace and develop plans to be enacted upon their return. Two questionnaires evaluated their CVD knowledge and confidence levels with respect to CVD knowledge, skills, communication. At the end of the study, participants were interviewed about their perceptions regarding the relevance of course content, needs, use of and barriers to the use of course information, course impact on practice, and interest in further training.
Dimer et al, 2013 [25] Australia –
Aboriginal Australians
CVD Mixed-methods study evaluating impact and uptake of a cardiac rehabilitation (rehab) program Cardiac rehab program:
1. Education sessions on CVD
2. Exercise sessions
1. Consultation phase- Focus groups with Aboriginal health professionals and community members
2. Implementation phase- Cardiac rehabilitation program conducted once a week with core features for CVD management, education and exercise retention
3. Evaluation phase- Interviews, questionnaires, yarning sessions as well as objective assessment of cardiovascular risk factors. Changes in risk factors were evaluated pre- and post- program using paired t-tests
Study used focus groups in first phase to ensure the program met Aboriginal community needs and expectations. The cardiac program was established under the auspices of Derbarl Yerrigan Health Service (DYHS) (a community controlled AMS) and conducted onsite to provide a culturally secure environment for the provision of exercise and education to address cardiovascular health. Education sessions employed using process of ‘yarning’, which is important in Aboriginal culture for transferring knowledge, building trust and establishing relationships. Visual models were used to illustrate educational messages and reinforced with experiential learning opportunities. Culturally appropriate merchandise (shirts), educational and health promotion resources (including fridge magnets, wallet cards) were produced to support the program. Program became community meeting place, creating an environment of support.
Farmer et al. 2016 [26] New Zealand- Māori Peoples Diabetes Participatory study to develop a culturally relevant diabetes prevention documentary Educational documentary for diabetes prevention 1. Partnership development- Obtained local support and established community advisory board (CAB)
2. Key informant interviews- Recruit health workers with direct experience working with Māori clients with or at risk for type 2 diabetes
3. Hui (focus groups)- Four hui groups conducted to generate action-oriented of community perspective on diabetes
4. Documentary production- Video was designed and edited with feedback from CAB and group of six Maori women
Principles of CBPR were applied to qualitative research design. First gained the support of local Elders. CAB was created to give researchers guidance on the research design to ensure cultural relevance was maintained and cultural protocols were observed. CAB also helped to interpret the research and analyze the data. Interviews helped to develop understanding of Māori beliefs about diabetes and barriers and facilitators to physical activity and healthy eating. Hui’s led by members of CAB and at end of session participants were asked to provide additional feedback. Hui functioned as a social occasion to discuss family and spiritual aspects of well-being. Documentary purpose/story was initiated by CAB and Maori women revised content to ensure it was culturally appropriate.
Haynes et al, 2019 [27] Australia- Aboriginal Australians Heart Disease Co-design, implement and evaluate the rheumatic heart disease (RHD) prevention program in a remote Aboriginal community RHD prevention program – educational course 1. Activities related to understanding and addressing RHD social determinants were delivered through an accredited course adapted to meet learner and project needs
2. Data collection comprised of focus groups, interviews, observation, and co-development and use of measurement tools.
3. Data analysis utilised process indicators from national guidelines for Aboriginal research
Utilized CBPR research design throughout various phases of study. Community leader identified RHD as issue of priority and worked with researchers to design and implement program. Community members were invited to participate in the study and collaborate on adapting the course for community needs. Study indicates that the lessons learned from this study will be used in next stages of the RHD elimination strategy. This includes strategies to scale-up community leadership in research agenda-setting and implementation.
Kakekagumi-ck et al, 2013 [28] Canada- Sandy Lake Diabetes Mixed methods study evaluating prevalence of diabetes in Sandy Lake and obtaining population data to develop culturally appropriate intervention to improve diabetes management (i.e. improve diet and increase physical activity) 1. Northern Store program to increase availability of healthy food
2. Home visit program
3. Diabetes radio show
4. Diabetes curriculum for grades 3 & 4
5. Community-wide walking trail to increase physical activity
6. Diabetes summer camps
1. Formative qualitative/ ethnographic study (1991–1996): Collected information on health beliefs and perceptions of food and physical activity, determinants of health
2. Community surveys (1993–1995): Documented T2DM prevalence and risk factors
3. Used ethnographic data and survey data to develop culturally appropriate intervention strategies
From 1991 to present, they have used formative methods, feasibility research and pilot testing to identify strategies to improve healthy eating and physical activity. The program has received community support, including participation from the community and partnerships with other programs and organizations in the community. All programs are culturally appropriate and have been adapted to suit the needs of the community through a participatory research approach. Over the 22 years of existence, the community has taken ownership of the program and activities have evolved in alignment with community needs and priorities. This program has been refined in an iterative fashion, with reciprocal capacity building for both key community stakeholders and academic partners.
Kholghi et al. 2018 [13] Canada – Quebec- Kanien’kehá:ka (Mohawk) Diabetes Sequential mixed-methods study evaluating
Health Education Program (HEP) for diabetes prevention amongst Indigenous children
HEP for diabetes prevention with group sessions on knowledge and skill development for healthy eating and physical activity 1. Cross-sectional survey for 23 teachers
2. Interviews of two elementary school principals
3. Three culturally appropriate Indigenous talking circles with HEP authors, teachers and parents
Study was guided by a participatory research approach that engaged the researchers and the Kahnawake Schools Diabetes Prevention Project Community Advisory Board in shared decision making throughout the project. Talking circles used to discuss the specified topic, this method is a more culturally appropriate increasingly being used in research by Indigenous researchers. Identified barriers such as need for cultural content and outdated resources, which will be used to refine program. This study did not consult with students to gain their perspective.
Peake et al., 2020 [29] Australia - Aboriginal Australians Stroke PAR study that engaged with Australian Aboriginal communities to develop culturally appropriate stroke health resources Stroke education booklet 1. Community engagement- Collaborative yarning session with Aboriginal Elders followed by series of working groups with members of the community
2. Evaluation- Researchers analyzed engagement session recordings to develop stroke education resource. Previous participants consulted in cycles to confirm design of resource.
Utilizes two stages of PAR to design stroke resource. In phase 1, they developed relationships with various members of the Aboriginal community. Collaborative yarning was used to share stories and identify needs for stroke booklet. Photographs and stories from the Elder were incorporated within the book to encompass simple connection to physical and spiritual environment. Group discussions were led by community members. In phase 2, researchers co-designed tool by creating drafts of booklet and obtaining feedback from Aboriginal organizations and community members. Signed support letters were obtained, and researchers continue to maintain contact with community through monthly visits.
Peiris et al, 2019 [30] Australia - Aboriginal Australians Chronic Disease Mixed-methods study aimed to develop and evaluate the feasibility of the electronic platform for community-based chronic disease screening for Aboriginal people 1 Deadly Step Program with:
1. iPad screening app
2. Provider portal and web-based reporting tool
3. Education events
1. Program enhancements: iPad screening app, administrator portal, provider portal and web-based reporting tool added to 1 Deadly step program
2. Evaluation: Mixed-methods evaluation comprising of risk factor analysis, survey data, and analytics from iPad and Web portal. Detailed interviews with key health service and program staff also conducted.
The 1 Deadly Step program was previously developed in partnership with New South Wales (NSW) Health and the Australian Rugby League to address the high prevalence of chronic diseases in NSW Aboriginal communities. Used a culturally safe, innovative, community-based model where annual events are held to increase awareness of chronic diseases and to promote prevention, early detection, and management. Uses popularity of rugby league in Aboriginal communities to encourage local communities to participate. Developed electronic platform according to previous feedback regarding program needs. App was developed with Aboriginal local artist. Program data, participant satisfaction surveys and staff interviews were used to evaluate feasibility.
Quinn et al. 2017 [31] Australia- Aboriginal Australians Chronic Disease Mixed-methods study aimed to re-design and evaluate impact of Get Healthy Service (GHS) for healthy behaviours in Aboriginal communities Program for healthy behaviours with:
1. Phone-based education and health tracker
2. Cultural referral pathway
1. Interviews with Aboriginal participants, leaders and community members, healthcare professionals and service providers for program re-design
2. Interview and questionnaire to evaluate design appropriateness
3.Quantitative pre-post evaluation of anthropometric measures, physical activity and fruit and vegetable consumption of Aboriginal participants
The GHS is a phone-based service supporting adults to make sustained improvements in healthy eating, physical activity, reducing alcohol intake and achieving or maintaining a healthy weight. Study interviewed Aboriginal participants, leaders and community members, healthcare to examine acceptability of the GHS and redesign GHS for Aboriginal context. Re-design was further confirmed with follow-up appropriateness study. Aboriginal participants recruited for pre-post study. Positive results used to educate communities and build awareness for future use of GHS.
Rowley et al, 2000 [32] Australia- Aboriginal Australians Obesity, Diabetes, CVD Cohort study assessing the sustainability of the Looma Healthy lifestyle program for prevention of chronic disease Healthy lifestyle program with:
1. Cooking classes
2. Health promotion events
3. Walking groups
1. 6-month intervention interval with total of 49 participants over 24 months. Evaluated impact of intervention on body mass index, glucose tolerance, and plasma insulin and triglyceride concentrations Previously consulted community to understand chronic disease risk factors. Several Aboriginal Health Workers were employed to run program operations. Following study, researchers worked with community to develop policies to enable community control and ownership of program to ensure key changes can be made in accordance with their risk factors of priority.
Shepherd et al, 2003 [33] Australia - Aboriginal Australians CVD Quantitative needs assessment to identify barriers to Indigenous patients taking up the cardiac rehabilitation program Cardiac rehab program with:
1. In-service education
2. Cardiac therapy by Indigenous health worker
1. Cross-sectional survey of stakeholder knowledge (Indigenous cardiac patients and health professionals) and views Established a steering committee, all members of which lived and worked in the communities targeted, to guide the project. A cross-sectional survey of stakeholder knowledge and views in regard to cardiac rehabilitation was designed. The survey took place in six communities, which are part of the North Queensland Rural Division of General Practice. Stakeholder feedback used to create themes regarding barriers to rehab program. Themes were not followed up or confirmed with participants.
Smylie et al, 2018 [34] Canada- First Nations CVD Pre-post study to test the effect of a customized, structured health literacy educational program for CVD medications CVD educational program with:
1. Nurse led education session
2. Interactive tablet and information booklet
1. Three education sessions delivered over 1 month. An interactive tablet application was used during each session and an information booklet and pill card was provided to participants. Medication knowledge and health literacy skills assessed before and after each session (pre-post). Applied an Indigenous community participatory action research partnership method that had been successfully demonstrated in a previous community-partnered, community-implemented health needs assessment project. The research team was led by Indigenous people. There was a local project research committee comprised of DHAC staff. Indigenous governance and management of research data and publications was formalized through a signed research, data-sharing and publication agreement.
Tibby et al, 2010 [35] Austrailia – Indigenous Australians CVD Mixed-methods study to improve access to specialist cardiac care in rural and remote areas across Queensland. Outreach specialist cardiac care:
1. Cardiac team (cardiologist, sonographic, Indigenous care workers)
2. Portable echocardiograph machine, ECG, point of care technology and vital signs monitor. Each patient receives an ECG, point of care testing, ECHO and blood analysis
Phase 1: Engagement
- Approached Indigenous Care Workers to evaluate their current role and assess if further cardiac training required
- Created initial cardiac screening tool in consultation with community to assist direct referral to the outreach program
Phase 2: Recovery Intervention
- Cardiac service team with a portable echo machine traveled to each site to assess patients and determine care plan
Phase 3: Capacity Building
- Program coordinator has devised a plan to encourage selected community members to be trained to provide framed programs to improve recovery after cardiac events as well as to improve primary cardiac health
Researchers had pre-established relationship with Indigenous communities in Queensland. Each of the communities were able to articulate their problems and concerns, as well as could voice what they needed for their community before start of study. Researchers established partnership and gave 10-year plan for project completion. Phase 1 involved series of community engagement sessions with Indigenous health workers to understand their role and how
to provide ‘care that resonated with historical traditions and intrinsic values of the communities. A cardiac assessment tool was devised, in consultation with the communities, to enhance the relationship and ownership of the Program at the local level. However, patients were not consulted about their cardiac needs or challenges. Phase 2, cardiac team travelled to each community and specialist also provided patient care letter Indigenous Health workers when returning to tertiary referral centre as mode of improvement. Researchers indicate that Phase 3 is in process.
Tobe et al, 2019 [36] Canada- First Nations Hyper tension (HT) Multicenter randomized control study to assess the effect of active or passive intervention on blood pressure (BP) levels HT management intervention with:
a) active: HT specific SMS messages
b) passive: general health behaviors SMS alone
1. Participants receive either active and passive, or only passive SMS intervention. Passive SMS described healthy lifestyle and behavior changes. Active messages included information on the management of hypertension as well as advice to follow-up with the participant’s health care provider if the measured BP was above target. Individual BP measurements were taken by community health workers using an automated BP device with Bluetooth transmission capability. Utilized PAR research approach for design, conduct and evaluation of the study. In previous studies, built partnership with Indigenous communities, where key stakeholders involved in designing study tools and evaluating data. All SMS text messages were derived from the Hypertension Canada Clinical Practice Guidelines and modified with community input to make them culturally sensitive. The study team and researchers included expertise appropriate to the intervention including clinical trials with Indigenous communities, hypertension measurement and management, program management and technical knowledge, participatory health research, Indigenous community health and research ethics, consequences of colonization and the Indian Residential Schools on Indigenous health, clinical trials design and statistics
Wakewich et al, 2016 [37] Canada- First Nations Cervical Cancer Multi-community qualitative study investigating stakeholder perception on the cervical cancer screening initiative Cancer screening program 1. Conducted 16 interviews with healthcare professionals
2. 9 focus groups with 69 women from the communities
Study is part of a larger public health initiative with First Nations women in Northwestern Ontario to develop culturally sensitive approaches to cervical cancer screening. Argue that education and screening initiatives must reflect the cultural preferences of Indigenous women, empowering them to take control of their experiences of health and body in cervical cancer screening. Principal investigator is a non-Indigenous cancer biologist who has worked with First Nations leaders and health representatives from 10 communities in Northwestern Ontario to define project priorities and optimal ways to actively engage community members. A PAR framework aimed at fostering collaboration between HCPs, community members and academic partners, has guided all stages of the study. Also conducted educational workshop to share findings and obtain feedback from the study participants. Discussions and meetings were continued during visits to the partner communities.
Walters et al, 2012 [38] USA- Alaska Natives CVD Randomized control trial to 1) to assess feasibility and initial efficacy of a culturally adapted intervention targeting diet and exercise compared to a family life-skills building intervention and 2) to strengthen tribal research infrastructure a) CVD prevention intervention with focus on diet and exercise
b) Family life-skills building intervention with focus on cohesiveness and connectedness
1. At-risk adults (n = 135) were randomly assigned to either a CVD prevention intervention arm or a comparison arm focusing on increasing family cohesiveness, communication, and connectedness. Both year-long conditions included 1 month of motivational interviewing counseling followed by personal coach contacts and family life-skills classes.
2. Blood chemistry, blood pressure, body mass index, food intake, and physical activity were measured at baseline and at 4- and 12-month follow-up
This project was a multidisciplinary collaboration among experienced tribal care providers. All parties were committed to a CBPR approach, which included respect for the tribes’ autonomy, sovereignty, and confidentiality, as well as subsequent dissemination of the findings to further the implementation of culturally relevant and cost-effective programs. Interventions were designed to incorporate cultural components and to emphasize a holistic approach to health consistent with Indigenous values. Last phase of the project involves results dissemination to the tribal council, community, and health care providers. Plan to hold at least two community town meetings to share the findings from all phases of the research project and to elicit feedback on data interpretation, risks and benefits to community, dissemination strategies, community readiness to implement intervention and transferability to other tribal nations.
Ziabakhsh et al, 2016 [39] Canada- Indigenous women CVD Pilot study evaluating Seven Sisters pilot intervention on participant health outcomes and the processes that contributed to them (how participants perceived the intervention) Heart healthy program with:
1. Weekly talking circles for education
1. Demographic and health profile data were obtained with an intake form
2. Eight two-hour, weekly women only talking sessions to discuss various CVD-related content and Indigenous health practices. Participants also completed a questionnaire in the first and last sessions that included questions on diet, physical activity, and smoking
Seven Sisters project was piloted as a gender- and culturally responsive model to promote heart-healthy activities among indigenous women. Project builds on previous research by using traditional processes and traditions (e.g., talking Circle) but also integrates Indigenous knowledge into mainstream health promotion messages and practices and promotes a holistic approach to heart health among women. A participatory and a developmental approach to evaluation was taken, as the program evolved, the focus of the evaluation also changed. Participants were given opportunity to comment on all aspects of the program, and researchers aim to modify program according to their suggestions. Data was analyzed by study team and cultural lead for triangulation and validity check.