Assessing the outcomes of participatory research: protocol for identifying, selecting, appraising and synthesizing the literature for realist review

<p>Abstract</p> <p>Background</p> <p>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 (<it>e.g.</it>, community groups or populations affected by illness), or those positioned to act on the knowledge generated by research (<it>e.g.</it>, 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.</p> <p>Methods</p> <p>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 (<it>i.e.</it>, 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.</p> <p>Results</p> <p>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.</p> <p>Discussion</p> <p>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.</p

A pilot study of Aboriginal health promotion from an ecological perspective

<p>Abstract</p> <p>Background</p> <p>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?</p> <p>Methods</p> <p>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).</p> <p>Results</p> <p>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.</p> <p>Conclusions</p> <p>The evaluation was useful for assessing the impact of the program on the nutrition environment and for understanding the ecological nature of program activities.</p

Mastery, perceived stress and health-related behaviour in northeast Arnhem Land: a cross-sectional study

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 (<25 or ≥25 years) for physical activity (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 <25 years engaging in ≤2 bouts of physical activity/week had greater mastery than individuals engaging in ≥3 bouts/week (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 <25 years had less mastery than women of equivalent age (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

'I know it's bad for me and yet I do it': exploring the factors that perpetuate smoking in Aboriginal Health Workers - a qualitative study

Extent: 12p. This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The electronic version of this article is the complete one and can be found online at: http://www.biomedcentral.com/1472-6963/12/102BACKGROUND 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.Anna P Dawson, Margaret Cargo, Harold Stewart, Alwin Chong and Mark Danie

Partnering with adults as a process of empowering youth in the community : a grounded theory study

Health and social policies identify empowerment as a guiding ideal for health promotion, yet there is little theoretical understanding of youth empowerment. The need for theory to guide practice and research in working with youth in a health promotion context led to this grounded theory study to develop a theory of youth empowerment. A community health nurse acting on BC Ministry of Health's adaptation of the World Health Organisation's Healthy Cities Initiative initiated a community organising project in an inner city community of Vancouver, which merged with the Vancouver Board of Parks and Recreation Blueprint for Youth Services policy. The study was based on 32 months of participant observation where the researcher was a co-facilitator of a community organising effort aimed at engaging youth in identifying their quality-of-life issues, and developing and implementing their solutions. Of the ,123 youth entering the process, 66 attended at least three meetings of which 18 demonstrated ongoing commitment to the community action process. Partnering between adults and youth as the process of empowering youth emerged as the core category in the analysis, comprised of two sub-processes, Creating an Empowering Environment for Youth and Becoming Empowered. An empowering environment allowed youth to take responsibility in a welcoming social climate with enabling support from adults. The adults demonstrated their belief in the capacity of youth to act in the community, expected youth to take responsibility, cared for youth, and offered encouragement through acting-with interactions with young people. Youth felt welcome and participated in the process, taking responsibility for voicing, decision making and action on their qualityof- life issues. The adults transferred the power to youth by giving up their responsibility for voicing, decision making and taking action. By taking responsibility and acting in the community with enabling support, the youth became empowered by controlling the process and incrementally developing their competence, self-esteem, confidence and understanding, which cultivated their belonging to the community. Participating in an empowering process enhanced their development and set in motion a social change process that raised the consciousness of adults and influenced organisational practice. The theory identifies youth empowerment as an ecological construct and a capacity-building process.Medicine, Faculty ofPopulation and Public Health (SPPH), School ofGraduat

Constructing a health and social indicator framework for indigenous community health research

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.</p

Cigarette smoking, mental health and social support: data from Northwestern First Nation

Background: The prevalence of smoking is high in many Aboriginal Canadian communities; rates of 50% are not uncommon. Aboriginal Canadians suffer a severe burden of smoking-related disease. Research in other populations has linked depression and smoking. It is not known whether mental health or affective measures are related to smoking for any of Canada's First Nations, and this study sought to answer this question. Understanding relations between affect and smoking behaviour is requisite to mounting anti-smoking interventions. Methods: Smoking status and psychosocial measures including depression, mastery, affect balance and social support were obtained in a community-based chronic disease survey for a rural interior Salishan First Nation in British Columbia (Plateau area). Persons surveyed were on-reserve residents (n=187), overweight (body mass index ≥25 kg/m2), with mean age of 44.1 years (standard deviation 15.0). Results: The prevalence of smoking was 48.1%. Adjusted for age, sex and body mass index, smokers relative to nonsmokers had higher (p&lt;0.010) depression (mean 21.3 [CI 95%, 19.1-23.4] vs. 16.1 [14.1-18.0]) and negative affect (18.6 [14.9-22.3] vs. 11.0 [7.6-14.4]), and lower mastery (36.4 [35.5-37.3] vs. 38.1 [37.2-38.9]). A positive relationship between mastery and social support was greater for nonsmokers (p=0.046). Conclusion: Depression and negative affect are associated with smoking among overweight persons in a rural First Nation in British Columbia. Furthermore, smoking is inversely related to mastery, and this relation varies with social support. Longitudinal study is required to determine whether smoking influences mental health and mastery, or the reverse.</p