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Abstract Background Participatory Research (PR) entails the co-governance of research by academic researchers and end-users. End-users are those who are affected by issues under study (e.g., community groups or populations affected by illness), or those positioned to act on the knowledge generated by research (e.g., clinicians, community leaders, health managers, patients, and policy makers). Systematic reviews assessing the generalizable benefits of PR must address: the diversity of research topics, methods, and intervention designs that involve a PR approach; varying degrees of end-user involvement in research co-governance, both within and between projects; and the complexity of outcomes arising from long-term partnerships. Methods We addressed the above mentioned challenges by adapting realist review methodology to PR assessment, specifically by developing inductively-driven identification, selection, appraisal, and synthesis procedures. This approach allowed us to address the non-uniformity and complexity of the PR literature. Each stage of the review involved two independent reviewers and followed a reproducible, systematic coding and retention procedure. Retained studies were completed participatory health interventions, demonstrated high levels of participation by non-academic stakeholders (i.e., excluding studies in which end-users were not involved in co-governing throughout the stages of research) and contained detailed descriptions of the participatory process and context. Retained sets are being mapped and analyzed using realist review methods. Results The librarian-guided search string yielded 7,167 citations. A total of 594 citations were retained after the identification process. Eighty-three papers remained after selection. Principle Investigators (PIs) were contacted to solicit all companion papers. Twenty-three sets of papers (23 PR studies), comprising 276 publications, passed appraisal and are being synthesized using realist review methods. Discussion The systematic and stage-based procedure addressed challenges to PR assessment and generated our robust understanding of complex and heterogeneous PR practices. To date, realist reviews have focussed on evaluations of relatively uniform interventions. In contrast our PR search yielded a wide diversity of partnerships and research topics. We therefore developed tools to achieve conceptual clarity on the PR field, as a beneficial precursor to our theoretically-driven synthesis using realist methods. Findings from the ongoing review will be provided in forthcoming publications.

Little research has assessed the fidelity, adaptation or integrity of activities implemented within community-based obesity prevention initiatives. To address this gap, a mixed-method process evaluation was undertaken in the context of the South Australian Obesity Prevention and Lifestyle (OPAL) initiative. An ecological coding procedure assessed fidelity and adaptation of activity settings, targets and strategies implemented in the second year of four communities. Implementation integrity reflected fidelity and adaptation to local context, whereas efforts resulting in significant deviations from the original plan were deemed to lack fidelity and integrity. Staff implemented 284 strategies in 205 projects. Results show that 68.3 and 2.1% of strategies were implemented with fidelity or adapted, respectively. Overall, 70.4% of all strategies were implemented with integrity. Staff experienced barriers with 29.6% of strategies. Chi-square analyses show statistically significant associations between implementation integrity and strategy type, intervention and behavioural targets. These relationships are weak to modest. The strongest relationship was found between implementation integrity and proximal target. Staff experienced implementation barriers at the coalition, policy, organization, interpersonal and community levels. The greatest range of barriers was encountered working with organizations. To overcome these barriers, staff took greater ownership, invested more time, persisted and allocated more financial resources.

Aboriginal Australians, including Aboriginal Health Workers (AHWs), smoke at rates double the non-Aboriginal population. This study utilized concept mapping methodology to identify and prioritize culturally relevant strategies to promote smoking cessation in AHWs. Stakeholder participants included AHWs, other health service employees and tobacco control personnel. Smoking cessation strategies (n = 74) were brainstormed using 34 interviews, 3 focus groups and a stakeholder workshop. Stakeholders sorted strategies into meaningful groups and rated them on perceived importance and feasibility. A concept map was developed using multi-dimensional scaling and hierarchical cluster analyses. Ten unique clusters of smoking cessation strategies were depicted that targeted individuals, family and peers, community, workplace and public policy. Smoking cessation resources and services were represented in addition to broader strategies addressing social and environmental stressors that perpetuate smoking and make quitting difficult. The perceived importance and feasibility of clusters were rated differently by participants working in health services that were government-coordinated compared with community-controlled. For health service workers within vulnerable populations, these findings clearly implicate a need for contextualized strategies that mitigate social and environmental stressors in addition to conventional strategies for tobacco control. The concept map is being applied in knowledge translation to guide development of smoking cessation programs for AHWs.

This study reports on the development and evaluation of a rating tool to assess the scientific utility and cultural appropriateness of community-level indicators for application with Indigenous populations. Indicator criteria proposed by the U.S. Institute of Medicine were culturally adapted through reviewing the literature and consultations with academic and Indigenous stakeholders. Pre-testing and collaborator feedback drove the iterative development of the tool with stakeholder groups in Canada, Aotearoa/New Zealand, and Australia. Pilot testing with 17 raters across countries involved rating the same selection of six health and social indicators using a six-point ordinal scale. The final version of the rating tool includes 16 questions within three criterion domains: "importance," "soundness," and "viability." Academic and community stakeholder review established face and content validity. The indicator rating tool demonstrated good internal consistency and excellent inter-rater reliability for two of three pilot testing groups. Use of this instrument can strengthen collaborative research planning and evaluation with Indigenous communities through selection of relevant and culturally appropriate indicators for application to public health research, prevention programmes, and health and social policy.

Democratic or equal participation in decision making is an ideal that community and academic stakeholders engaged in participatory research strive to achieve. This ideal, however, may compete with indigenous peoples' right to self-determination. Study objectives were to assess the perceived influence of multiple community (indigenous) and academic stakeholders engaged in the Kahnawake Schools Diabetes Prevention Project (KSDPP) across six domains of project decision making and to test the hypothesis that KSDPP would be directed by community stakeholders. Self-report surveys were completed by 51 stakeholders comprising the KSDPP Community Advisory Board (CAB), KSDPP staff, academic researchers and supervisory board members. KSDPP staff were perceived to share similar levels of influence with (i) CAB on maintaining partnership ethics and CAB activities and (ii) academic researchers on research and dissemination activities. KSDPP staff were perceived to carry significantly more influence than other stakeholders on decisions related to annual activities, program operations and intervention activities. CAB and staff were the perceived owners of KSDPP. The strong community leadership aligns KSDPP with a model of community-directed research and suggests that equitable participation--distinct from democratic or equal participation--is reflected by indigenous community partners exerting greater influence than academic partners in decision making. (Contains 4 tables and 1 figure.)

Health and social indicators that capture the distinct historical, social, and cultural contexts of Indigenous communities can play an important role in informing the planning and delivery of community interventions. There is currently considerable interest in cataloguing and vetting meaningful community-level health and social indicators that could be applied to research and health promotion activities in Indigenous communities in Australia, Canada, and New Zealand, inclusive of conventional indicators as well as measures developed specifically for use in or with Indigenous communities. To avoid haphazard selection of indicators, and to assure the comprehensiveness and relevance of any given set of indicators, a framework that can accommodate and conceptually classify indicators representing a full range of domains is required. We report here on the development of a conceptual framework, by which Indigenous community indicators, and more general community-level social indicators, can be sorted, catalogued, and systematically classified within four hierarchical levels. The indicator framework was developed across Canada, Australia and New Zealand in consultation with academic researchers and Indigenous community stakeholders, building from established health and social indicator systems. The Indigenous indicator framework permits Indigenous communities, public health researchers, and funding agencies to compare and select the most appropriate indicators for application in specific contexts from the multitude of existing indicators.

Abstract Background This report presents the initial results of the first Epidemiological Catchment Area Study in mental health in Canada. Five neighbourhoods in the South-West sector of Montreal, with a population of 258,000, were under study. The objectives of the research program were: 1) to assess the prevalence and incidence of psychological distress, mental disorders, substance abuse, parasuicide, risky behaviour and quality of life; 2) to examine the links and interactions between individual determinants, neighbourhood ecology and mental health in each neighbourhood; 3) to identify the conditions facilitating the integration of individuals with mental health problems; 4) to analyse the impact of the social, economic and physical aspects of the neighbourhoods using a geographic information system. 5) to verify the adequacy of mental health services. Method A longitudinal study in the form of a community survey was used, complemented by focused qualitative sub-studies. The longitudinal study included a randomly selected sample of 2,433 individuals between the ages of 15 and 65 in the first wave of data collection, and three other waves are projected. An overview of the methods is presented. Results The prevalence of psychological distress, mental disorders and use of mental health services and their correlates are described for the first wave of data collection. Conclusion Several vulnerable groups and risk factors related to socio-demographic variables have been identified such as: gender, age, marital status, income, immigration and language. These results can be used to improve treatment services, prevention of mental disorders, and mental health promotion.

Abstract Background Aboriginal Health Workers (AHWs) have a mandate to deliver smoking cessation support to Aboriginal people. However, a high proportion of AHWs are smokers and this undermines their delivery of smoking cessation programs. Smoking tobacco is the leading contributor to the burden of disease in Aboriginal Australians and must be prevented. Little is known about how to enable AHWs to quit smoking. An understanding of the factors that perpetuate smoking in AHWs is needed to inform the development of culturally relevant programs that enable AHWs to quit smoking. A reduction of smoking in AHWs is important to promote their health and also optimise the delivery of smoking cessation support to Aboriginal clients. Methods We conducted a fundamental qualitative description study that was nested within a larger mixed method participatory research project. The individual and contextual factors that directly or indirectly promote (i.e. perpetuate) smoking behaviours in AHWs were explored in 34 interviews and 3 focus groups. AHWs, other health service staff and tobacco control personnel shared their perspectives. Data analysis was performed using a qualitative content analysis approach with collective member checking by AHW representatives. Results AHWs were highly stressed, burdened by their responsibilities, felt powerless and undervalued, and used smoking to cope with and support a sense of social connectedness in their lives. Factors directly and indirectly associated with smoking were reported at six levels of behavioural influence: personal factors (e.g. stress, nicotine addiction), family (e.g. breakdown of family dynamics, grief and loss), interpersonal processes (e.g. socialisation and connection, domestic disputes), the health service (e.g. job insecurity and financial insecurity, demanding work), the community (e.g. racism, social disadvantage) and policy (e.g. short term and insecure funding). Conclusions An extensive array of factors perpetuated smoking in AHWs. The multitude of personal, social and environmental stressors faced by AHWs and the accepted use of communal smoking to facilitate socialisation and connection were primary drivers of smoking in AHWs in addition to nicotine dependence. Culturally sensitive multidimensional smoking cessation programs that address these factors and can be tailored to local needs are indicated.

Abstract Introduction Long-term measures to reduce tobacco consumption in Australia have had differential effects in the population. The prevalence of smoking in Aboriginal peoples is currently more than double that of the non-Aboriginal population. Aboriginal Health Workers are responsible for providing primary health care to Aboriginal clients including smoking cessation programs. However, Aboriginal Health Workers are frequently smokers themselves, and their smoking undermines the smoking cessation services they deliver to Aboriginal clients. An understanding of the barriers to quitting smoking experienced by Aboriginal Health Workers is needed to design culturally relevant smoking cessation programs. Once smoking is reduced in Aboriginal Health Workers, they may then be able to support Aboriginal clients to quit smoking. Methods We undertook a fundamental qualitative description study underpinned by social ecological theory. The research was participatory, and academic researchers worked in partnership with personnel from the local Aboriginal health council. The barriers Aboriginal Health Workers experience in relation to quitting smoking were explored in 34 semi-structured interviews (with 23 Aboriginal Health Workers and 11 other health staff) and 3 focus groups (n = 17 participants) with key informants. Content analysis was performed on transcribed text and interview notes. Results Aboriginal Health Workers spoke of burdensome stress and grief which made them unable to prioritise quitting smoking. They lacked knowledge about quitting and access to culturally relevant quitting resources. Interpersonal obstacles included a social pressure to smoke, social exclusion when quitting, and few role models. In many workplaces, smoking was part of organisational culture and there were challenges to implementation of Smokefree policy. Respondents identified inadequate funding of tobacco programs and a lack of Smokefree public spaces as policy level barriers. The normalisation of smoking in Aboriginal society was an overarching challenge to quitting. Conclusions Aboriginal Health Workers experience multilevel barriers to quitting smoking that include personal, social, cultural and environmental factors. Multidimensional smoking cessation programs are needed that reduce the stress and burden for Aboriginal Health Workers; provide access to culturally relevant quitting resources; and address the prevailing normalisation of smoking in the family, workplace and community.

Abstract A systematic review of qualitative studies was undertaken to understand the barriers to physical activity experienced by adolescents who were overweight or obese. From a search of electronic databases and ‘grey’ literature, published between 1950 and 2009, 15 studies met the inclusion criteria. Bronfenbrenner’s model of human development provided an ecological lens for identifying and synthesising barriers to physical activity. Two reviewers appraised study quality. Miles and Huberman’s cross-case analysis was integrated with thematic networking to synthesize the individual, interpersonal and environmental level barriers for boys and girls of different ethnicities and socioeconomic status, across school settings and generalised context. Thirty-five barriers were identified, 13 of which occurred in physical activity situations in the school setting, 18 were not linked to a specific setting, and the remainder were common across both contexts. The fact that these barriers emerged from studies that focused on topics such as victimisation and mental health is particularly poignant and reflects the potentially pervasive influence of adolescent’s excessive weight not only in relation to physical activity situations but other aspects of their lives. Furthermore, socioeconomic status and ethnicity was poorly considered, with only one study linking these participant characteristics to quotations and discussing the potential implications. At present, there are few qualitative studies with sufficiently thick description or interpretive validity that provide insight into this vulnerable group of adolescents, and give them a voice to influence policy and practice.

Abstract Background For health promotion to be effective in Aboriginal and Torres Strait Islander Communities, interventions (and their evaluation) need to work within a complex social environment and respect Indigenous knowledge, culture and social systems. At present, there is a lack of culturally appropriate evaluation methods available to practitioners that are capable of capturing this complexity. As an initial response to this problem, we used two non-invasive methods to evaluate a community-directed health promotion program, which aimed to improve nutrition and physical activity for members of the Aboriginal community of the Goulburn-Murray region of northern Victoria, Australia. The study addressed two main questions. First, for members of an Aboriginal sporting club, what changes were made to the nutrition environment in which they meet and how is this related to national guidelines for minimising the risk of chronic disease? Second, to what degree was the overall health promotion program aligned with an ecological model of health promotion that addresses physical, social and policy environments as well as individual knowledge and behaviour? Methods Rather than monitoring individual outcomes, evaluation methods reported on here assessed change in the nutrition environment (sports club food supply) as a facilitator of dietary change and the 'ecological' nature of the overall program (that is, its complexity with respect to numbers of targets, settings and strategies). Results There were favourable changes towards the provision of a food supply consistent with Australian guidelines at the sports club. The ecological analysis indicated that the design and implementation of the program were consistent with an ecological model of health promotion. Conclusions The evaluation was useful for assessing the impact of the program on the nutrition environment and for understanding the ecological nature of program activities.

Abstract Background Aboriginal and Torres Strait Islander women have a higher prevalence and incidence of obesity and type 2 diabetes than non-Indigenous Australian women. Physical inactivity is a key modifiable risk factor for obesity and evidence shows that even modest reductions in waist circumference (WC) have significant health benefits. Trialing physical activity programs in difficult-to-reach high risk groups, especially urban Indigenous Australians poses distinct implementation challenges. Methods/Design The trial objective is to evaluate the effectiveness of a structured 12-week physical activity group program with nutritional advice. The design is a pragmatic randomised controlled trial. This study protocol describes the implementation and evaluation of the program. Participants are randomised into either an intervention or waitlisted group. The waitlisted group have a 12 month waiting period before commencing the 12-week program. Participant data is collected at baseline, 12, 24 and 52 weeks. Participants are Aboriginal and Torres Strait Islander women, aged 18-64 years with a waist circumference greater than 80 centimetres residing in Adelaide. The primary outcome measure is WC change immediately post program from baseline. Secondary outcomes include short term and long term changes in WC, weight, blood pressure, fasting blood glucose, insulin, insulin resistance (calculated HOMA), haemoglobin A1C (HbA1C), triglycerides and C-reactive protein (CRP). Behavioural and psychosocial surveys are administered to assess physical activity, dietary intake and the participant's motivation, self-efficacy and perceived social support for physical activity. Qualitative interviews focusing on participants' motivation, enablers and barriers to healthy eating and physical activity will be undertaken. Implementation fidelity and participation are also assessed. Discussion The Aboriginal and Torres Strait Islander Women's Fitness Program (WFP) is designed to provide a rigorous physiological and client-based evaluation of a structured 12-week program aimed to increase metabolic fitness and reduce WC in this high risk population. Evaluation results aim to provide the support necessary to design programs that are accessible, affordable and effective at reducing WC, while also improving the metabolic profile of overweight Aboriginal and Torres Strait Islander women. Trial registration Australian New Zealand Clinical Trials Registry ACTRN12610000224022

Abstract Background Public health promotes an ecological approach to chronic disease prevention, however, little research has been conducted to assess the integration of an ecological approach in community-based prevention programs. This study sought to contribute to the evidence base by assessing the extent to which an ecological approach was integrated into an Aboriginal community-based cardiovascular disease (CVD) and type 2 diabetes prevention program, across three-intervention years. Methods Activity implementation forms were completed by interview with implementers and participant observation across three intervention years. A standardised ecological coding procedure was applied to assess participant recruitment settings, intervention targets, intervention strategy types, extent of ecologicalness and organisational partnering. Inter-rater reliability for two coders was assessed at Kappa = 0.76 (p < .0.001), 95% CI (0.58, 0.94). Results 215 activities were implemented across three intervention years by the health program (HP) with some activities implemented in multiple years. Participants were recruited most frequently through organisational settings in years 1 and 2, and organisational and community settings in year 3. The most commonly utilised intervention targets were the individual (IND) as a direct target, and interpersonal (INT) and organisational (ORG) environments as indirect targets; policy (POL), and community (COM) were targeted least. Direct (HP→ IND) and indirect intervention strategies (i.e., HP→ INT→ IND, HP→ POL → IND) were used most often; networking strategies, which link at least two targets (i.e., HP→[ORG-ORG]→IND), were used the least. The program did not become more ecological over time. Conclusions The quantity of activities with IND, INT and ORG targets and the proportion of participants recruited through informal cultural networking demonstrate community commitment to prevention. Integration of an ecological approach would have been facilitated by greater inter-organisational collaboration and centralised planning. The upfront time required for community stakeholders to develop their capacity to mobilise around chronic disease is at odds with short-term funding cycles that emphasise organisational accountability.

Abstract Background Participatory Research (PR) entails the co-governance of research by academic researchers and end-users. End-users are those who are affected by issues under study (e.g., community groups or populations affected by illness), or those positioned to act on the knowledge generated by research (e.g., clinicians, community leaders, health managers, patients, and policy makers). Systematic reviews assessing the generalizable benefits of PR must address: the diversity of research topics, methods, and intervention designs that involve a PR approach; varying degrees of end-user involvement in research co-governance, both within and between projects; and the complexity of outcomes arising from long-term partnerships. Methods We addressed the above mentioned challenges by adapting realist review methodology to PR assessment, specifically by developing inductively-driven identification, selection, appraisal, and synthesis procedures. This approach allowed us to address the non-uniformity and complexity of the PR literature. Each stage of the review involved two independent reviewers and followed a reproducible, systematic coding and retention procedure. Retained studies were completed participatory health interventions, demonstrated high levels of participation by non-academic stakeholders (i.e., excluding studies in which end-users were not involved in co-governing throughout the stages of research) and contained detailed descriptions of the participatory process and context. Retained sets are being mapped and analyzed using realist review methods. Results The librarian-guided search string yielded 7,167 citations. A total of 594 citations were retained after the identification process. Eighty-three papers remained after selection. Principle Investigators (PIs) were contacted to solicit all companion papers. Twenty-three sets of papers (23 PR studies), comprising 276 publications, passed appraisal and are being synthesized using realist review methods. Discussion The systematic and stage-based procedure addressed challenges to PR assessment and generated our robust understanding of complex and heterogeneous PR practices. To date, realist reviews have focussed on evaluations of relatively uniform interventions. In contrast our PR search yielded a wide diversity of partnerships and research topics. We therefore developed tools to achieve conceptual clarity on the PR field, as a beneficial precursor to our theoretically-driven synthesis using realist methods. Findings from the ongoing review will be provided in forthcoming publications.

Abstract Background Indigenous peoples in Australia are disadvantaged on all markers of health and social status across the life course. Psychosocial factors are implicated in the aetiology of chronic diseases and in pathways underpinning social health disparities. Minimal research has investigated psychosocial factors and health in Indigenous peoples. This study evaluated associations between mastery, perceived stress, and health-related behaviour for a remote Indigenous population in Australia. Methods Complete data on mastery (the degree to which individuals feel in control of their lives), perceived stress, physical activity, and fruit and vegetable consumption were obtained for 177 participants in a community-based chronic disease risk factor survey. Psychosocial questionnaires were completed as an option during community screening (response rate = 61.9%). Extensive consultation facilitated the cross-cultural adaptation of measures. Results Mastery was inversely correlated with perceived stress measures (p < 0.009): recent stress, r = -0.47; chronic stress, r = -0.41; and youth stress, r = -0.30. Relationships between mastery and behaviour varied according to age group (p = 0.001) and vegetable consumption (p = 0.005). Individuals aged ≥25 years engaging in ≤2 bouts of physical activity/week had lower mastery than individuals engaging in ≥3 bouts/week, with means (95% CI) of 14.8 (13.7–15.8) and 17.1 (15.3–19.0), respectively (p = 0.026). Individuals aged ≥25 years eating vegetables ≤3 times/week had lower mastery than those eating vegetables ≥4 times/week (p = 0.009) [means 14.7 (13.8–15.5) and 17.3 (15.5–19.1), respectively]. Individuals p = 0.022) [means 17.2 (15.2–19.2) and 13.8 (11.9–15.7), respectively]. For men ≥25 years and women ≥15 years, mastery was inversely related to age (p < 0.002). Men p = 0.001) [means 13.4 (12.1–14.7) and 17.5 (15.3–19.8), respectively]. Conclusion Consistent with previous research, this study provides additional support for a link between mastery and health-related behaviour, and extends evidence of this association to a remote Indigenous population. Mastery's association with perceived stress, its age-specific association with health behaviour, and findings of low mastery amongst young men, highlights a need for life course research accounting for contextual factors affecting Indigenous peoples.

Abstract Background Aboriginal children in Canada are at increased risk for type 2 diabetes. Given that physical inactivity is an important modifiable risk factor for type 2 diabetes, prevention efforts targeting Aboriginal children include interventions to enhance physical activity involvement. These types of interventions require adequate assessment of physical activity patterns to identify determinants, detect trends, and evaluate progress towards intervention goals. The purpose of this study was to develop a culturally appropriate interactive computer program to self-report physical activity for Kanien'kehá:ka (Mohawk) children that could be administered in a group setting. This was an ancillary study of the ongoing Kahnawake Schools Diabetes Prevention Project (KSDPP). Methods During Phase I, focus groups were conducted to understand how children describe and graphically depict type, intensity and duration of physical activity. Sixty-six students (40 girls, 26 boys, mean age = 8.8 years, SD = 1.8) from four elementary schools in three eastern Canadian Kanien'kehá:ka communities participated in 15 focus groups. Children were asked to discuss and draw about physical activity. Content analysis of focus groups informed the development of a school-day and non-school-day version of the physical activity interactive recall (PAIR). In Phase II, pilot-tests were conducted in two waves with 17 and 28 children respectively to assess the content validity of PAIR. Observation, videotaping, and interviews were conducted to obtain children's feedback on PAIR content and format. Results Children's representations of activity type and activity intensity were used to compile a total of 30 different physical activity and 14 non-physical activity response choices with accompanying intensity options. Findings from the pilot tests revealed that Kanien'kehá:ka children between nine and 13 years old could answer PAIR without assistance. Content validity of PAIR was judged to be adequate. PAIR was judged to be comprehensive, acceptable, and enjoyable by the children. Conclusions Results indicate that PAIR may be acceptable to children between nine and 13 years old, with most in this age range able to complete PAIR without assistance. The flexibility of its programming makes PAIR an easily adaptable tool to accommodate diverse populations, different seasons, and changing trends in physical activity involvement.