Marion Maar

A Qualitative Study of Provider Perspectives of Structural Barriers to Cervical Cancer Screening Among First Nations Women

OBJECTIVE In Canada, opportunistic screening programs have successfully reduced mortality from cervical cancer; however, minority or disadvantaged groups, as well as women in northern and rural areas, are inadequately recruited by this approach. Hence, we set out to examine the structural barriers that prevent First Nations womens participation in cervical cancer screening. METHODS Using a participatory action research approach and semistructured interview guides, we conducted in-depth interviews with 18 experienced health care professionals, 12 of whom were also community members. These individuals included nurses, nurse practitioners, community health representatives, social workers and physicians who provide care to women in our First Nations partner communities. In the current report, we explored perceived barriers to cervical cancer screening through the lens of service providers. RESULTS Structural barriers to cervical cancer screening for First Nations women included shortage of appropriate health care providers, lack of a recall-based screening system, geographic and transportation barriers; health literacy and socioeconomic inequalities, generational effects, and the colonial legacy. CONCLUSION Existing, opportunistic cervical cancer screening programs do not perform well for First Nations women who experience significant screening-related health inequalities that are largely influenced by structural barriers. Sustainable screening interventions in First Nations communities require approaches that resolve these structural barriers, explore new ways of screening, and provide education for both women and health care providers. Many of the structural barriers are rooted in colonial history. Given the negative impact of the consequences of colonization on indigenous women worldwide, many of our findings strongly resonate with marginalized populations in other countries.

Innovations on a shoestring: a study of a collaborative community-based Aboriginal mental health service model in rural Canada

BackgroundCollaborative, culturally safe services that integrate clinical approaches with traditional Aboriginal healing have been hailed as promising approaches to ameliorate the high rates of mental health problems in Aboriginal communities in Canada. Overcoming significant financial and human resources barriers, a mental health team in northern Ontario is beginning to realize this ideal. We studied the strategies, strengths and challenges related to collaborative Aboriginal mental health care.MethodsA participatory action research approach was employed to evaluate the Knaw Chi Ge Win services and their place in the broader mental health system. Qualitative methods were used as the primary source of data collection and included document review, ethnographic interviews with 15 providers and 23 clients; and 3 focus groups with community workers and managers.ResultsThe Knaw Chi Ge Win model is an innovative, community-based Aboriginal mental health care model that has led to various improvements in care in a challenging rural, high needs environment. Formal opportunities to share information, shared protocols and ongoing education support this model of collaborative care. Positive outcomes associated with this model include improved quality of care, cultural safety, and integration of traditional Aboriginal healing with clinical approaches. Ongoing challenges include chronic lack of resources, health information and the still cursory understanding of Aboriginal healing and outcomes.ConclusionsThis model can serve to inform collaborative care in other rural and Indigenous mental health systems. Further research into traditional Aboriginal approaches to mental health is needed to continue advances in collaborative practice in a clinical setting.

Challenges and Rewards of Health Research in Northern, Rural, and Remote Communities

PURPOSE This article, based on our collective experience of conducting population-based and industrially based health research in partnership with northern, rural, and remote communities in Canada and Australia, will convey the related challenges and opportunities, and provide recommendations. METHODS (1) The role(s) of northern, rural, and remote communities; (2) ethics requirements; (3) study budgets and contracts; (4) questionnaire design, response rates, and the collection of biological specimens; and (5) preparation and presentation of results, their impact, knowledge translation, and future studies were considered. RESULTS In our experience, it is important to be collaborative, respectful, and have a regular physical presence in such communities. Academic and community ethical review of the proposed research may be required. Written research proposals, contracts, and a communication plan for the results are strongly recommended. Questionnaire construction and acceptable methodology impact study success. Regular in person feedback to the communities is essential. It is important to collaboratively establish future related research priorities. CONCLUSIONS Although academic evaluation can promote the desire for the conduct of more rapid health research, successful research with northern, rural, and remote communities should build community capacity and requires time, a continuing presence, collaboration, respect, and active community involvement.

I-RREACH: an engagement and assessment tool for improving implementation readiness of researchers, organizations and communities in complex interventions

BackgroundNon-communicable chronic diseases are the leading causes of mortality globally, and nearly 80% of these deaths occur in low- and middle-income countries (LMICs). In high-income countries (HICs), inequitable distribution of resources affects poorer and otherwise disadvantaged groups including Aboriginal peoples. Cardiovascular mortality in high-income countries has recently begun to fall; however, these improvements are not realized among citizens in LMICs or those subgroups in high-income countries who are disadvantaged in the social determinants of health including Aboriginal people. It is critical to develop multi-faceted, affordable and realistic health interventions in collaboration with groups who experience health inequalities. Based on community-based participatory research (CBPR), we aimed to develop implementation tools to guide complex interventions to ensure that health gains can be realized in low-resource environments.MethodsWe developed the I-RREACH (Intervention and Research Readiness Engagement and Assessment of Community Health Care) tool to guide implementation of interventions in low-resource environments. We employed CBPR and a consensus methodology to (1) develop the theoretical basis of the tool and (2) to identify key implementation factor domains; then, we (3) collected participant evaluation data to validate the tool during implementation.ResultsThe I-RREACH tool was successfully developed using a community-based consensus method and is rooted in participatory principles, equalizing the importance of the knowledge and perspectives of researchers and community stakeholders while encouraging respectful dialogue. The I-RREACH tool consists of three phases: fact finding, stakeholder dialogue and community member/patient dialogue. The evaluation for our first implementation of I-RREACH by participants was overwhelmingly positive, with 95% or more of participants indicating comfort with and support for the process and the dialogue it creates.ConclusionsThe I-RREACH tool was designed to (1) pinpoint key domains required for dialogue between the community and the research team to facilitate implementation of complex health interventions and research projects and (2) to identify existing strengths and areas requiring further development for effective implementation. I-RREACH has been found to be easily adaptable to diverse geographical and cultural settings and can be further adapted to other complex interventions. Further research should include the potential use of the I-RREACH tool in the development of blue prints for scale-up of successful interventions, particularly in low-resource environments.

Unpacking the Black Box: A Formative Research Approach to the Development of Theory-Driven, Evidence-Based, and Culturally Safe Text Messages in Mobile Health Interventions

Background Mobile-cellular subscriptions have increased steadily over the past decade. The accessibility of SMS messages over existing mobile networks is high and has almost universal availability even on older and unsophisticated mobile phones and in geographic settings where wireless coverage is weak. There is intensive exploration of this inexpensive mobile telecommunication technology to improve health services and promote behavior change among vulnerable populations. However, a neglected area of research is the documentation and critical analysis of the formative research process required in the development and refinement of effective SMS messages. Objective The objective of this qualitative research study was to identify major factors that may impact on the effectiveness of evidence-based SMS messages designed to reduce health inequities in hypertension management in low resource settings, including Aboriginal populations in high-income countries and rural populations in low-income countries. Specifically, we were interested in uncovering the range of mediators that impact on appropriate message content transmission and, ultimately, on health behavior improvements in a range of these sociocultural settings. Methods Collaborative qualitative research with Canadian Aboriginal and Tanzanian participants was conducted to deconstruct the content and transmission of evidence-based health information contained in SMS messages in the context of an international research project designed to address health inequalities in hypertension, and to develop a grounded theory of the major factors that mediate the effectiveness of this communication. We also examined the interrelationship of these mediators with the three essential conditions of the behavior system of the Behavioral Change Wheel model (capability, opportunity, and motivation) and cultural safety. Results Four focus groups with a total of 45 participants were conducted. Our grounded theory research revealed how discrepancies develop between the evidence-based text message created by researchers and the message received by the recipient in mobile health interventions. These discrepancies were primarily generated by six mediators of meaning in SMS messages: (1) negative or non-affirming framing of advocacies, (2) fear- or stress-inducing content, (3) oppressive or authoritarian content, (4) incongruity with cultural and traditional practices, (5) disconnect with the reality of the social determinants of health and the diversity of cultures within a population, and (6) lack of clarity and/or practicality of content. These 6 mediators of meaning provide the basis for sound strategies for message development because they impact directly on the target populations’ capability, opportunity, and motivation for behavior change. Conclusions The quality of text messages impacts significantly on the effectiveness of a mobile health intervention. Our research underscores the urgent need for interventions to incorporate and evaluate the quality of SMS messages and to examine the mediators of meaning within each targeted cultural and demographic group. Reporting on this aspect of mobile health intervention research will allow researchers to move away from the current black box of SMS text message development, thus improving the transparency of the process as well as the quality of the outcomes.

Using Community Engagement to Inform and Implement a Community-Randomized Controlled Trial in the Anishinaabek Cervical Cancer Screening Study

Social, political, and economic factors are directly and indirectly associated with the quality and distribution of health resources across Canada. First Nations (FN) women in particular, endure a disproportionate burden of ill health in contrast to the mainstream population. The complex relationship of health, social, and historical determinants are inherent to increased cervical cancer in FN women. This can be traced back to the colonial oppression suffered by Canadian FN and the social inequalities they have since faced. Screening – the Papinacolaou (Pap) test – and early immunization have rendered cervical cancer almost entirely preventable but despite these options, FN women endure notably higher rates of diagnosis and mortality due to cervical cancer. The Anishinaabek Cervical Cancer Screening Study (ACCSS) is a participatory action research project investigating the factors underlying the cervical cancer burden in FN women. ACCSS is a collaboration with 11 FN communities in Northwest Ontario, Canada, and a multidisciplinary research team from across Canada with expertise in cancer biology, epidemiology, medical anthropology, public health, virology, women’s health, and pathology. Interviews with healthcare providers and community members revealed that prior to any formal data collection education must be offered. Consequently, an educational component was integrated into the existing quantitative design of the study: a two-armed, community-randomized trial that compares the uptake of two different cervical screening modalities. In ACCSS, the Research Team integrates community engagement and the flexible nature of participatory research with the scientific rigor of a randomized controlled trial. ACCSS findings will inform culturally appropriate screening strategies, aiming to reduce the disproportionate burden of cervical disease in concert with priorities of the partner FN communities.

A Framework for the Study of Complex mHealth Interventions in Diverse Cultural Settings

Background To facilitate decision-making capacity between options of care under real-life service conditions, clinical trials must be pragmatic to evaluate mobile health (mHealth) interventions under the variable conditions of health care settings with a wide range of participants. The mHealth interventions require changes in the behavior of patients and providers, creating considerable complexity and ambiguity related to causal chains. Process evaluations of the implementation are necessary to shed light on the range of unanticipated effects an intervention may have, what the active ingredients in everyday practice are, how they exert their effect, and how these may vary among recipients or between sites. Objective Building on the CONSORT-EHEALTH (Consolidated Standards of Reporting Trials of Electronic and Mobile HEalth Applications and onLine TeleHealth) statement and participatory evaluation theory, we present a framework for the process evaluations for mHealth interventions in multiple cultural settings. We also describe the application of this evaluation framework to the implementation of DREAM-GLOBAL (Diagnosing hypertension—Engaging Action and Management in Getting Lower BP in Indigenous and LMIC [low- and middle-income countries]), a pragmatic randomized controlled trial (RCT), and mHealth intervention designed to improve hypertension management in low-resource environments. We describe the evaluation questions and the data collection processes developed by us. Methods Our literature review revealed that there is a significant knowledge gap related to the development of a process evaluation framework for mHealth interventions. We used community-based participatory research (CBPR) methods and formative research data to develop a process evaluation framework nested within a pragmatic RCT. Results Four human organizational levels of participants impacted by the mHealth intervention were identified that included patients, providers, community and organizations actors, and health systems and settings. These four levels represent evaluation domains and became the core focus of the evaluation. In addition, primary implementation themes to explore in each of the domains were identified as follows: (1) the major active components of the intervention, (2) technology of the intervention, (3) cultural congruence, (4) task shifting, and (5) unintended consequences. Using the four organizational domains and their interaction with primary implementation themes, we developed detailed evaluation research questions and identified the data or information sources to best answer our questions. Conclusions Using DREAM-GLOBAL to illustrate our approach, we succeeded in developing an uncomplicated process evaluation framework for mHealth interventions that provide key information to stakeholders, which can optimize implementation of a pragmatic trial as well as inform scale up. The human organizational level domains used to focus the primary implementation themes in the DREAM-GLOBAL process evaluation framework are sufficiently supported in our research, and the literature and can serve as a valuable tool for other mHealth process evaluations. Trial Registration ClinicalTrials.gov NCT02111226; https://clinicaltrials.gov/ct2/show/NCT02111226 (Archived by WebCite at http://www.webcitation.org/6oxfHXege)

Racism and Oral Health Outcomes among Pregnant Canadian Aboriginal Women.

This study assessed links between racism and oral health outcomes among pregnant Canadian Aboriginal women. Baseline data were analyzed for 541 First Nations (94.6%) and Métis (5.4%) women in an early childhood caries preventive trial conducted in urban and on-reserve communities in Ontario and Manitoba. One-third of participants experienced racism in the past year determined by the Measure of Indigenous Racism Experience. In logistic regressions, outcomes significantly associated with incidents of racism included: wearing dentures, off-reserve dental care, asked to pay for dental services, perceived need for preventive care, flossing more than once daily, having fewer than 21 natural teeth, fear of going to dentist, never received orthodontic treatment and perceived impact of oral conditions on quality of life. In the context of dental care, racism experienced by Aboriginal women can be a barrier to accessing services. Programs and policies should address racism’s insidious effects on both mothers’ and children’s oral health outcomes.

Strategies for Increasing Cervical Cancer Screening Amongst First Nations Communities in Northwest Ontario, Canada.

The high burden of cervical cancer in Indigenous populations worldwide is due to underscreening and inadequate follow-up. Using qualitative, participatory action research, we interviewed health care staff to identify ways to increase screening recruitment in First Nations communities in Northwest Ontario, Canada. Our findings suggest the value of a multilevel social–ecological model to promote behavioral changes at the community, health care service and stakeholder, and decision-maker level. Participants emphasized the central role of First Nations women as nurturers of life and for the well-being of their family members. They stressed the importance of building awareness and motivation for cervical cancer screening through various activities including continuous education, hosting screening events specifically for women, improving the attitude and service of health care providers, and promoting screening tools and policies that complement and are respectful of First Nations women.

Teaching tools to engage Anishinaabek First Nations women in cervical cancer screening: Report of an educational workshop

Objective: To explore educational strategies for engaging First Nations women in Canada to attend cervical cancer screening. Design: Within a participatory action research framework, semi-structured interviews with health-care providers in First Nations communities revealed that education about the value of screening is perceived as being a key factor to promote cervical cancer screening. Setting: To obtain feedback from workshop informants, a 1-day educational workshop was held to identify appropriate educational intervention strategies, which would be applied in a forthcoming randomised controlled cervical screening trial. Methods: Common discussion and discussion groups, which were facilitated by a First Nations workshop moderator and a note taker. Results: This workshop helped to strengthen the ethical space dialogue with the First Nations communities with whom the study team had established research partnerships. The workshop atmosphere was relaxed and the invited informants decided that an educational health promotion event for community women needed to be held prior to inviting them to the cervical screening trial. Such an event would provide an opportunity to communicate the importance of attending regular cervical screening allowing women to make informed decisions about screening participation. Complementary promotional items, including an eye-catching pamphlet and storytelling, were also suggested. Conclusion: The key messages from the events and promotional items can help to de-stigmatise women who develop a type of cancer that is caused by a sexually transmitted virus that affects both men and women. Developing and implementing positive health education that respectfully depicts female bodies, sexuality and health behaviours through a First Nations lens is strongly warranted.