Cervical cancer services for Indigenous Women: Advocacy, Community-Based Research and Policy Change in Australia

Collaborative research undertaken in the state of Queensland, Australia, resulted in major changes in cervical cancer screening and treatment for Indigenous women. Guided by an Indigenous statewide reference group and with an Indigenous researcher playing a lead role, qualitative data were collected using interviews, focus groups, and larger community meetings; and case studies were conducted with health workers and community members from diverse rural, remote and urban communities, to explore the different cultural and structural factors affecting understanding and awareness of cervical cancer and Indigenous women's use of and access to health services for screening, diagnosis and treatment. These data were supplemented by an analysis of clinical data and health service checklists. We discuss the methodology and summarize the key social and structural factors that discourage women from presenting for screening or returning for follow-up. These include women's misunderstanding of cervical cancer screening, fear of cancer, distrust of health services, poor recall and follow-up systems, and the economic and social burden to women presenting for treatment. We describe how the research process and subsequent activities provided Indigenous women with a vehicle for their own advocacy, resulting in important policy and program changes.

Low back pain and disability in community-based women : prevalence and association factors

Objective: Although low back pain is characterized by both pain and disability, there is a paucity of studies that have concurrently examined risk factors for these features in community-dwelling women. We aimed to investigate the prevalence and identify factors associated with both back pain and disability.

Design: A questionnaire was mailed to 542 women from a community-based research database. Detailed demographic data were collected, including participants' menopause, relationship, and employment status. Point and period prevalence estimates for back pain were derived. Participants were classified based on pain intensity and disability scores calculated from the Chronic Pain Grade Questionnaire, and factors associated with high levels of pain and disability were examined.

Results: A total of 506 (93.4%) women completed the questionnaire. More than 90% of participants had experienced low back pain, with 75.1% and 22.5% reporting pain in the past 12 months and currently, respectively. Seven percent of women reported a high level of disability and 16% reported high-intensity pain. Women with higher levels of disability were more likely to have a higher body mass index and to have pain currently, whereas those with greater pain intensity were more likely to be younger, have a higher body mass index, not be employed outside the home, drink alcohol, and have current pain.

Conclusions: Low back pain is a common problem for community-based women. A high body mass index and current pain were factors independently associated with both high pain intensity and disability. Longitudinal investigation is required to determine the predictive nature of these factors and their potential role in preventing pain and disability.

Are the potential benefits of a community-based participatory approach to public health research worth the potential cost?

Much of public health research is conducted in a community setting or is designed to target particular population groups. Community-based participatory research (CBPR) is gaining recognition as good practice in studies of this type(Flicker et al 2007). Its merit is based on the inclusion of the community as active participants at all stages of the research process (Goodman 2006). The focus on justice and equity in this approach is seen to contribute to a range of additional potential research benefits including increased relevance and sustainability of interventions arising from the research ( Blumenthal 2004; Wallestein 2006) However, it is widely acknowledged that adoption of a consciously CBPR approach requires additional expertise. time and resources from researchers and from communities (Tanjasiri et al 2002; Massaro & Claiborne 2001; Israel et al 1998). Adoption of CBPR is also limited by existing infrastructures which are supportive of more· traditional models of research. Changes to professional development programs, funding guidelines and criteria. grant review processes and ethics requirements are needed to support increased application of this approach (Israel et al 2001). As all research resources are limited, the potential additional benefits offered by CBPR over and above a more traditional research approach need to be weighed against the potential additional costs involved. Changes to research infrastructure are unlikely to occur until the costs and
benefits of a consciously CBPR approach as compared to a more traditional research approach can be demonstrated.

This is an exploratory paper that summarises the arguments put forward to date in relation to CBPR. A research case study and an evaluation framework are then used for a conceptual analysis of differences in the potential costs and benefits of the two approaches. Firstly, the paper describes the differences between traditional and consciously CBPR approaches. The reported benefits of CBPR are then outlined, followed by a discussion of the potential costs. Finally, the potential costs are compared to the potential benefits of using a CBPR approach, using a case study of existing research.

Consumer participation in designing community based consumer-directed disability care : lessons from a participatory action research-inspired project

User participation has been embraced worldwide as a means to provide better consumer outcomes in health and community care. However, methodologies to achieve effective consumer engagement at the programme design level have remained under-explored. The purpose of this study was to evaluate the impact of a Participatory Action Research (PAR)-inspired methodology used to develop a consumer-directed community care/individualised funding service model for people with disabilities. A retrospective analysis of case notes and internal reports for the first 6 years of an ongoing project were examined. The findings suggest that PAR methodologies need to take into account community development, group support, and capacity building as well as succession planning and risk management issues in order to facilitate the often lengthy policy and project development process. Drawing on these findings, this article discusses five lessons and their methodological implications for PAR in a health or social policy/programme design context.

Research on school and community-based curriculum practice in aboriginal, multicultural and migrant education

This research studies some key problems in relation to curriculum reform in multicultural and migrant education: social concepts of multicultural education, divergent curriculum theories informing practice, the facilitation process in regard to project self-study and action research and the development of cultural perspectives in general curriculum pedagogy.

Harnessing the potential of community-based participatory research approaches in bipolar disorder

BACKGROUND: Despite the rapid growth in the sophistication of research on bipolar disorder (BD), the field faces challenges in improving quality of life (QoL) and symptom outcomes, adapting treatments for marginalized communities, and disseminating research insights into real-world practice. Community-based participatory research (CBPR)-research that is conducted as a partnership between researchers and community members-has helped address similar gaps in other health conditions. This paper aims to improve awareness of the potential benefits of CBPR in BD research. METHODS: This paper is a product of the International Society for Bipolar Disorders (ISBD) Taskforce on Community Engagement which includes academic researchers, healthcare providers, people with lived experience of BD, and stakeholders from BD community agencies. Illustrative examples of CBPR in action are provided from two established centres that specialize in community engagement in BD research: the Collaborative RESearch Team to study psychosocial issues in BD (CREST.BD) in Canada, and the Spectrum Centre for Mental Health Research in the United Kingdom. RESULTS AND DISCUSSION: We describe the philosophy of CBPR and then introduce four core research areas the BD community has prioritized for research: new treatment approaches, more comprehensive outcome assessments, tackling stigma, and enhanced understanding of positive outcomes. We then describe ways in which CBPR is ideal for advancing each of these research areas and provide specific examples of ways that CBPR has already been successfully applied in these areas. We end by noting potential challenges and mitigation strategies in the application of CBPR in BD research. CONCLUSIONS: We believe that CBPR approaches have significant potential value for the BD research community. The observations and concerns of people with BD, their family members, and supports clearly represent a rich source of information. CBPR approaches provide a collaborative, equitable, empowering orientation to research that builds on the diversity of strengths amongst community stakeholders. Despite the potential merits of this approach, CBPR is as yet not widely used in the BD research field, representing a missed opportunity.

The costs of a community-based intervention to promote maternal health

The costs of community-level interventions are rarely reported, although such insights are needed if intervention research is to be useful to practitioners seeking to understand what might be involved in replicating interventions in different contexts. We report the costs of a 2-year community-based intervention to promote the health of recent mothers in Victoria, Australia. Program of Resources, Information and Support for Mothers was an integrated programme of primary care and community-based strategies. It had health care professional training, health education and community development components as well as an emphasis on creating ‘mother-friendly’ environments. Costs included the programme costs [primarily the salaries of the community development officers (CDO) in the field] and also ‘induced’ costs that relate to the CDOs' successes in attracting additional resources to the intervention from the local community. The total cost averaged A$272 490 per rural community and A$313 900 per urban community, equivalent to A$172.40 and A$128.70 per mother, respectively. For every A$10 of public funds initially invested in the project, the CDOs were able to attract a further A$1–2 worth of local resources, predominantly in the form of volunteer time or donated services.

Negative beliefs about low back pain are associated with high pain intensity and high level disability in community-based women

Background Although previous studies have investigated beliefs about back pain in clinical and employed populations, there is a paucity of data examining the beliefs of the broader community. We aimed to characterize the beliefs that community-dwelling women have about back pain and its consequences, and to determine whether those with varying levels of pain intensity and disability differ in their beliefs. Methods 542 community-dwelling women, aged 24 to 80 years, were recruited from a research database. Participants completed a self-administered questionnaire that included detailed demographic information, the Chronic Pain Grade Questionnaire (CPG) and the Back Beliefs Questionnaire (BBQ). The CPG examined individuals' levels of pain intensity and disability, and the BBQ investigated their beliefs about back pain and its consequences. Results 506 (93.4%) women returned the study questionnaire. The mean (SD) BBQ score for the cohort was 30.7 (6.0), indicating generally positive beliefs about back pain. However, those women with high intensity pain and high level disability had a mean (SD) score of 28.5 (5.7) and 24.8 (5.7) respectively, which reflects greater negativity about back pain and its consequences. There was an association between negative beliefs and high pain intensity (OR = 0.94 (95% CI: 0.90, 0.99), p = 0.01) and high level disability (OR = 0.93 (95% CI: 0.89, 0.97), p = 0.001), after adjusting for confounders. Conclusion This study highlights that although women living in the community were generally positive about back pain, subgroups of women with high pain intensity and high level disability were identified who had more pessimistic views. While a causal relationship cannot be inferred from these cross-sectional data, the results suggest that negative beliefs individuals have about back pain may be predictive of chronic, disabling spinal pain.

Sea search : a community-based citizen science monitoring program for Victoria, Australia, Marine National Parks and Marine Sanctuaries

Community involvement in monitoring Victoria’s Marine Protected Areas (MPAs) engages coastal volunteers in looking after their marine ‘front yards”. The Management Strategy for Victoria’s System of Marine National Parks and Marine Sanctuaries dedicates an entire theme to community engagement with core key performance areas. This includes community participation. The Sea Search community based monitoring program was developed in 2003 to engage volunteers in meaningful ecological data collection for future sustainability of Victoria’s MPAs. Deakin University, an academic institute, and Parks Victoria, the management agency for Victoria’s MPAs, through a research partner program, trialled three different habitat monitoring methodologies. The trails assessed volunteer ability to collect scientific data, and social science aspects for their involvement in a community-based monitoring program. Information collected by volunteers, feeds directly into their local MPA management strategies to address issues such as climate change, introduced pests and human impacts and natural ecological variation.

The Sea Search program addresses the two action programmes, Agenda 21 and the Rio Declaration on Environment and Development, created at the United Nations Earth Summit, held in 1992. Both documents highlight the need for community engagement and capacity building for sustainability, health and integrity of the earth. Involvement in the Sea Search program builds the volunteer’s capacity by learning scientific skills, interacting with other like minded community members, and creating relationships with all organisations involved in the delivery of the program. In this regard, Sea Search is a citizen science program involving all sectors in society by promoting public-interest and research for decision making and planning of Victoria’s system of Marine National Parks and Marine Sanctuaries.

Program sustainability of a community-based intervention to prevent falls among older Australians

Multi-strategy interventions have been demonstrated to prevent falls among older people, but studies have not explored their sustainability. This paper investigates program sustainability of Stay on Your Feet (SOYF), an Australian multi-strategy falls prevention program (1992–1996) that achieved a significant reduction in falls-related hospital admissions. A series of surveys assessed recall, involvement and current falls prevention activities, 5 years post-SOYF, in multiple original SOYF stakeholder groups within the study area [general practitioners (GPs), pharmacists, community health (CH) staff, shire councils (SCs) and access committees (ACs)]. Focus groups explored possible behavioural changes in the target group. Surveys were mailed, except to CH staff and ACs, who participated in guided group sessions and were contacted via the telephone, respectively. Response rates were: GPs, 67% (139/209); pharmacists, 79% (53/67); CH staff, 63% (129/204); SCs, 90% (9/10); ACs, 80% (8/10). There were 73 older people in eight focus groups. Of 117 GPs who were practising during SOYF, 80% recalled SOYF and 74% of these reported an influence on their practice. Of 46 pharmacists operating a business during SOYF, 45% had heard of SOYF and 79% of these reported being ‘somewhat’ influenced. Of 76 community health staff (59%) in the area at that time, 99% had heard of SOYF and 82% reported involvement. Four SCs retained a SOYF resource, but none thought current activities were related. Seven ACs reported involvement, but no activities were sustained. Thirty-five focus group participants (48%) remembered SOYF and reported a variety of SOYF-initiated behaviour changes. Program sustainability was clearly demonstrated among health practitioners. Further research is required to assess long-term effect sustainability.

Community-based environmental education : government and community, economics and environment

This thesis contends that government focus on policy implicitly defines community education as a means of overcoming barriers to government-initiated change, rather than as an input to governmental decision-making. The role of education is thus viewed as instrumentalist rather than as dialectical in nature. I argue that this role has been reinforced and driven by economic rationalism, as a mechanism related to scientific theory and practice. The thesis addresses the role of government in non-institutional community-based environmental education. Of interest is environmental education under the dominance of economic rationalism and as expressed in government-derived policy, in its own right, and as enacted in two government funded animal management projects. The main body of data, then, includes a review of some contemporary environmental policies and two case studies of 'policy in practice'. Chapter One provides an overview of environmentalism as it has emerged as part of the discourse of Western political systems. Recognised as part of this change is a move to environmentalism embued with the rhetoric of economic theory. The manifestation of this change can be seen in an emphasis on management for the natural environment's use as a resource for humans. Education under this arrangement is valued in terms of its ability to support initiatives that are perceived as economically viable and economically advantageous, maintaining centralised control of decision-making and serving the interests of those who profit from this arrangement. Government-derived environmental policies are presented in Chapter Two. They provide evidence of the conjoining of environment with economic rationalism and the adoption of a particular stance which is both utilitarian and instrumentalist. Emerging from this is an understanding of the limitations placed on environmental debates that do not respond to complex understandings of context and instead support and legitimate centralisation of decision-making and control. Chapter Three presents an argument for an historical approach to environmental education research to accommodate contextual dimensions, as well as scientific, economic and technical dimensions, of the subject under study. An historical approach to research, inclusive of biographical, intergenerational and geographical histories, goes some way to providing an understanding of current individual and collective responses to policy enactment within the two study sites. It also responds to the concealing of history which results from the reduction of environmental debates to economic terms. With this in mind, Chapters Four and Five provide two historical case studies of 'policy in practice'. Chapter Four traces the workings of a rabbit control project in the Sutton Grange district of Victoria and Chapter Five provides an account of a mouse plague project in the Wimmera and Mallee regions of Victoria. The Sutton Grange rabbit project is organised and controlled by district landholders while the Wimmera and Mallee mouse project is organised and controlled by representatives from a scientific organisation and a government agency. Considered in juxtaposition, the two case studies enable an analysis of two somewhat different expressions of the 'role of government'. Chapter Six investigates the competing processes of community participation in governmental decision-making and Australia's system of representative democracy, Despite a call for increased community participation, the majority of policies remain dominated by governmental rhetoric and ideology underpinned by a belief in impartiality. The primacy of economics is considered in terms of government and community interaction, with specific reference to the emergence of particular conceptual constructions, such as cost-benefit analysis, that support this dominance. Of specific importance to this thesis is the argument that economic theory is essentially anthropocentric and individualist and, thus, necessarily marginalises particular conceptions of environment that are non-anthropocentric and non-individualistic. Finally, Chapter Six examines two major interrelated tensions; those of central interests and community interests, and economic rationalism and environmentalist. Chapter Seven looks at examples of theories and practices that fall outside the rationality determined by scientistic knowledge. It is clear from the examination of environmental policy within this thesis that the role ascribed to environmental education is instrumentalist. The function of education is often to support, promote and implement policy and its advocated practices. It is also clear from the examination of policy and advocated processes that policy defines community education as a means of manifesting change as determined by policy, rather than as an input to governmental decision-making. The domination of scientific, economic and technocratic processes (and legitimation of processes) allows only for an instrumentalist approach to education from government. What is encouraged by government through the process of change is continuity rather than reform. It promotes change that will not disrupt the governing hegemony. Particular perspectives and practices, such as a critical approach to education, are omitted or considered only within the unquestioned rationale of the dominant worldview. Chapter Seven focuses on the consequence of government attention to policy which implicitly defines community education as a means of overcoming barriers to change, rather than as an input to governmental decision-making. Finally a list of recommendations is put forward as a starting point to reconstruct community-based environmental education. The role considered is one that responds to, and encourages engagement in, debates which expose disparate views, assumptions and positions. Community ideology must be challenged through the public practices of communication and understanding, decision-making, and action. Intervention is not on a level that encourages a preordinate outcome but, rather, what is encouraged is elaborate consideration of disparate views and rational opinions, and the exposure of assumptions and interests behind ideological positions.

Community-based rehabilitation : why not in Iraq?

Introduction: Community-based rehabilitation (CBR) has emerged and developed since the 1950s as a possible solution for socio-economic reintegration of people with disabilities. Government and non government organizations are key players and have vital roles in policy making, planning, funding, managing and implementing CBR programmes.
Contents: This article explores the role of government and non-government organizations and international agencies in community-based rehabilitation in Iraq. It examines the possibility of NGOs initiating and running (CBR) programmes for people with a disability regardless of Iraqi government commitment or participation.
Conclusions: The research results show that implementation of CBR in Iraq is vital but not widely spread. Non-government organizations seem more active, committed and capable at the present time being to initiate, run and manage CBR programmes when compared with the government of Iraq.

The development of a network for community based obesity prevention : the CO-OPS collaboration

Background: Community-based interventions are a promising approach and an important component of a comprehensive response to obesity. In this paper we describe the Collaboration of COmmunity-based Obesity Prevention Sites (CO-OPS Collaboration) in Australia as an example of a collaborative network to enhance the quality and quantity of obesity prevention action at the community level. The core aims of the CO-OPS Collaboration are to: identify and analyse the lessons learned from a range of community-based initiatives aimed at tackling obesity, and; to identify the elements that make community-based obesity prevention initiatives successful and share the knowledge gained with other communities.
Methods: Key activities of the collaboration to date have included the development of a set of Best Practice Principles and knowledge translation and exchange activities to promote the application (or use) of evidence, evaluation and analysis in practice.
Results: The establishment of the CO-OPS Collaboration is a significant step toward strengthening action in this area, by bringing together research, practice and policy expertise to promote best practice, high quality evaluation and knowledge translation and exchange. Future development of the network should include facilitation of further
evidence generation and translation drawing from process, impact and outcome evaluation of existing communitybased interventions.
Conclusions: The lessons presented in this paper may help other networks like CO-OPS as they emerge around the globe. It is important that networks integrate with each other and share the experience of creating these networks.