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.

A systematic review of community-based participatory research interventions in pediatric and adolescent populations

Background. Community-based participatory research (CBPR) is a collaborative approach to research actively involving community members in all aspects of the research process. CBPR is not a new research method, but an approach that has gained increased attention in the field of public health over the last several years. Recognition of the inequalities in health status associated with social and environmental factors have led to calls for a renewed focus on ecological approaches to research. Ecological approaches acknowledge that the health of the community is dependent on an interaction between behavioral and environmental factors affecting the entire population. While many published studies document the benefits of CBPR in difficult-to-reach populations and describe successful implementation of this approach in adult populations, relatively few studies have been conducted in child and adolescent populations. Given that children and adolescents are particularly sensitive to the effects of their physical environments and may also be distrustful of outsiders, ecological approaches involving the community as partners, such as CBPR, may be especially useful in this population. ^ Objective. This thesis reviews published studies using a community-based participatory research approach in children and adolescents to assess the appropriateness of this approach in this population. ^ Method. Studies using CBPR in youth populations were identified using Medline and other Internet searches through both MeSH heading and text-word searches. ^ Results. A total of 16 studies were identified and analyzed for this review. Nine of the sixteen studies were experimental or quasi-experimental design, with Asthma being the most commonly studied disease. ^ Conclusions. While many studies using CBPR were not conducted with the level of scientific rigor typically found in clinical trial research, the studies reviewed each contributed to a greater understanding of the problems they investigated. Furthermore, interventional studies provided lasting benefits to communities under study above what would be found in studies using more traditional research approaches. While CBPR may not be appropriate for all research situations due to the time and resources required, we conclude that is a useful approach and should be considered when conducting community-based research for pediatric and adolescent populations.^

Perceptions of institutional support of community -based participatory research within prevention research centers

The Institute of Medicine (IOM) report on the future of health care states that the focus on health needs to shift to the management and prevention of chronic illnesses and that academic health centers (AHCs) should play an active role in this process through community partnerships (IOM, 2002). Grant funding from the National Institutes of Health and the creation of the Centers for Disease Control and Prevention (CDC) Prevention Research Centers (PRC) across the county represent a transition toward more proactively seeking out community partnerships to better design and disseminate health promotion programs (Green, 2001). ^ The focus of the PRCs is to conduct rigorous, community-based, prevention research, to seek outcomes applicable to public health programs and policies. The PRCs work is to create and foster partnerships among public health and community organizations, to address health promotion and disease prevention issues (CDC, 2003). ^ The W.K. Kellogg Foundation defines CBPR as "a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change to improve community health." ^ In 1995, CDC asked the IOM to review the PRC program to examine the extent to which the program is providing the public health community with strategies to address public health problems in disease prevention and health promotion (IOM, 1997). No comprehensive evaluation n of the individual PRCs had ever been done (IOM, 1997). ^ The CDC was interested in understanding how it could better support the PRC program through improved management and oversight to influence the program's success. The CDC only represents one of the entities that influence the success of a PRC. Another key entity to consider is the support of and influence of the Schools of Public Health in which the PRCs reside. Using evaluation criteria similar to those that were developed by the IOM, this study examined how aspects of structural capacity of the Schools of Public Health in which the PRCs reside are perceived to influence PRC community-based research activities. ^

Dry tropics water smart : a community based approach to residential outdoor water consumption

This paper discusses the Townsville City Council Dry Tropics Water Smart (DTWS) initiative, developed by TCC Integrated Sustainability Services (ISS) and Townsville Water, and informed by The University of Adelaide. The program draws on many years of experience by the TCC team to blend key community-based research approaches in order to develop this residential outdoor water conservation program. Several community pilots have been conducted to test different behaviour change strategies and messages. This paper outlines recent steps taken to develop the community trials, as guided by a combination of behaviour change theories including community-based social marketing and thematic communications methods. Some preliminary results are outlined focused on community uptake of different strategies, community perceptions of communication materials, and some insights into the effectiveness of outdoor water hardware.

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.

Avian Cholera emergence in Arctic-nesting northern Common Eiders: using community-based, participatory surveillance to delineate disease outbreak patterns and predict transmission risk

Emerging infectious diseases are a growing concern in wildlife conservation. Documenting outbreak patterns and determining the ecological drivers of transmission risk are fundamental to predicting disease spread and assessing potential impacts on population viability. However, evaluating disease in wildlife populations requires expansive surveillance networks that often do not exist in remote and developing areas. Here, we describe the results of a community-based research initiative conducted in collaboration with indigenous harvesters, the Inuit, in response to a new series of Avian Cholera outbreaks affecting Common Eiders (Somateria mollissima) and other comingling species in the Canadian Arctic. Avian Cholera is a virulent disease of birds caused by the bacterium Pasteurella multocida. Common Eiders are a valuable subsistence resource for Inuit, who hunt the birds for meat and visit breeding colonies during the summer to collect eggs and feather down for use in clothing and blankets. We compiled the observations of harvesters about the growing epidemic and with their assistance undertook field investigation of 131 colonies distributed over >1200 km of coastline in the affected region. Thirteen locations were identified where Avian Cholera outbreaks have occurred since 2004. Mortality rates ranged from 1% to 43% of the local breeding population at these locations. Using a species-habitat model (Maxent), we determined that the distribution of outbreak events has not been random within the study area and that colony size, vegetation cover, and a measure of host crowding in shared wetlands were significantly correlated to outbreak risk. In addition, outbreak locations have been spatially structured with respect to hypothesized introduction foci and clustered along the migration corridor linking Arctic breeding areas with wintering areas in Atlantic Canada. At present, Avian Cholera remains a localized threat to Common Eider populations in the Arctic; however expanded, community-based surveillance will be required to track disease spread.

Research Monograph: Building Online Participatory Systems: Towards the Community Based Interactive Environmental Decision Support Systems

The importance of broadening community participation in environmental decision-making is widely recognized and lack of participation in this process appears to be a perennial problem. In this context, there have been calls from some academics for the more extensive use of geographic information systems (GIS) and distance learning technologies, accessible via the Internet, as a possible means to inform and empower communities. However, a number of problems exist. For instance, at present the scope for online interaction between policy-makers and citizens is currently limited. Contemporary web-based environmental information systems suffer from this lack of interactivity on the one hand and on the other hand from the apparent complexity for the lay user. This paper explores the issue of online community participation at the local level and attempts to construct a framework for a new (and potentially more effective) model of online participatory decision-making. The key components, system architecture and stages of such a model are introduced. This model, referred to as a ‘Community Based Interactive Environmental Decision Support System’, incorporates advanced information technologies, distance learning and community involvement tools which will be applied and evaluated in the field through a pilot project in Tokyo in the summer of 2002.

Using participatory action research in a community-based initiative addressing complex mental health needs

Objective: This paper describes the first phase of a larger project that utilizes participatory action research to examine complex mental health needs across an extensive group of stakeholders in the community. Method: Within an objective qualitative analysis of focus group discussions the social ecological model is utilized to explore how integrative activities can be informed, planned and implemented across multiple elements and levels of a system. Seventy-one primary care workers, managers, policy-makers, consumers and carers from across the southern metropolitan and Gippsland regions of Victoria, Australia took part in seven focus groups. All groups responded to an identical set of focusing questions. Results: Participants produced an explanatory model describing the service system, as it relates to people with complex needs, across the levels of social ecological analysis. Qualitative themes analysis identified four priority areas to be addressed in order to improve the system's capacity for working with complexity. These included: (i) system fragmentation; (ii) integrative case management practices; (iii) community attitudes; and (iv) money and resources. Conclusions: The emergent themes provide clues as to how complexity is constructed and interpreted across the system of involved agencies and interest groups. The implications these findings have for the development and evaluation of this community capacity-building project were examined from the perspective of constructing interventions that address both top-down and bottom-up processes.

A new research agenda into community-based protest in construction

Many countries face enormous development challenges in adapting to demographic change, urbanisation and emerging issues such as housing affordability and climate change. These challenges are best resolved in consultation with communities rather than in conflict with them. A rich tradition of research and intellectual frameworks exist in the fields of urban geography and planning to understand and manage community concerns during the pre-development approval stages of new projects. However current theoretical frameworks are inadequate in construction management and a new research agenda is needed to develop conceptual frameworks to guide thinking about the role of communities in the construction process. By discussing the components of such a model, it is concluded that this would require a fundamental shift in thinking which challenges traditional structuralist paradigms. A new constructivist paradigm is presented that conceives community consultation as a negotiation process which does not stop at the pre-development planning stages but which continues over the entire life of a project.

“Yarning” as a method for community-based health research with indigenous women : the indigenous women's wellness research program

This project explores yarning as a methodology for understanding health and wellness from an indigenous woman's perspective. Previous research exploring indigenous Australian women's perspectives have used traditional Western methodologies and have often been felt by the women themselves to be inappropriate and ineffective in gathering information and promoting discussion. This research arose from the indigenous women themselves, and resulted in the exploration of using yarning as a methodology. Yarning is a conversational process that involves the sharing of stories and the development of knowledge. It prioritizes indigenous ways of communicating, in that it is culturally prescribed, cooperative, and respectful. The authors identify different types of yarning that are relevant throughout their research, and explain two types of yarning—family yarning and cross-cultural yarning—which have not been previously identified in research literature. This project found that yarning as a research method is appropriate for community-based health research with indigenous Australian women. This may be an important finding for health professionals and researchers to consider when working and researching with indigenous women from other countries.