Using participatory research to challenge the status quo for women’s cardiovascular health

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Abstract
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Cardiovascular health research has been dominated by medical and patriarchal paradigms, minimizing a broader perspective of causes of disease. Socioeconomic status as a risk for cardiovascular disease is well established by research, yet these findings have had little influence. Participatory research (PR) that frames mixed method research has potential to bring contextualized clinically relevant findings into program planning and policy-making arenas toward developing meaningful health and social policies relevant to primary prevention. In this article we provide an overview of a PR program that included two quantitative and one qualitative studies and then we discuss lessons learned. The PR process we found was empowering for lone mothers, and transformative for lone mothers and researchers. Further, PR as an approach to research opened spaces in practice and policy-making arenas to raise upstream issues relevant to the health of low income lone mothers. We conclude that while PR is an effective approach to social determinants research, as a time-intensive endeavor, and one that does not easily align with research tradition, researchers must consider the strengths and drawbacks of PR when planning to implement such an approach.

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  • Abstract
  • 10.1016/j.cjca.2011.07.050
053 Impact of Socioeconomic Status on Cardiovascular Risk Factors and Health Behaviours in Youth
  • Sep 1, 2011
  • Canadian Journal of Cardiology
  • S Lord + 8 more

053 Impact of Socioeconomic Status on Cardiovascular Risk Factors and Health Behaviours in Youth

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  • Cite Count Icon 1
  • 10.20377/jfr-992
Change in maternal well-being during the COVID-19 pandemic: Did pre-pandemic social support and parenting stress buffer or aggravate mental health disparities among lone and partnered mothers in Germany?
  • Mar 22, 2024
  • Journal of Family Research
  • Claudia Recksiedler + 2 more

Objective: Our study aims to examine whether and how pre-pandemic conditions shaped change in well-being among partnered and lone mothers in Germany. Background: The lives and daily routines of parents changed dramatically because of the pandemic, which affected their mental health. Particularly mothers reported increased psychological distress during the pandemic, which is likely related to the higher load of care responsibilities mothers shouldered to compensate for pandemic-related childcare and school closures. Yet mixed findings emerged on the pandemic’s impact on lone mothers, who were already suffering from poorer mental health compared to partnered mothers. Method: We use longitudinal data from a probability sample surveyed before and during the pandemic to examine changes in maternal well-being (i.e., subjective psychological well-being and general life satisfaction), and differences between lone and partnered mothers in Germany (N = 3,578; 14.3% lone mothers at baseline). Results: Socioeconomic status was positively associated with changes in maternal well-being, but no difference emerged between lone and partnered mothers. Although levels of pre-pandemic social support and parenting stress did not affect changes in maternal well-being among partnered mothers, these factors were associated with a less pronounced decline in maternal well-being among lone mothers. Conclusion: The lack of differences between lone and partnered mothers could be due to implemented institutional safety nets for lone mothers, and increased relationship strain for partnered mothers, during the pandemic.

  • Research Article
  • Cite Count Icon 72
  • 10.1080/07399330591004845
Lone Mothers Are at Higher Risk for Cardiovascular Disease Compared with Partnered Mothers. Data from the National Health and Nutrition Examination Survey III (NHANES III)
  • Aug 1, 2005
  • Health Care for Women International
  • L E Young + 2 more

Lone mothers are a disadvantaged population, with research in several countries indicating that they experience low levels of physical and mental health. While research has demonstrated a socioeconomic gradient for cardiovascular disease (CVD), little research has explored lifestyle and clinical risk for CVD and prevalence of CVD events in lone mothers. The purpose of this study is (1) to compare select CVD lifestyle risks (smoking, obesity, physical activity), health, and relevant sociodemographic variables in partnered versus lone mothers; (2) to examine the relationship between partner status and having experienced a CVD event (myocardial infarction [MI], congestive heart failure [CHF], stroke). Data from the U.S. National Health and Nutrition Examination Survey III (NHANES III) included 1,446 women over 60 years with one or more children less than 17 years old. Lone mothers included women who were widowed, divorced, separated, never married, or married without the spouse living in the household (n = 623; weighted sample represents n = 3,904,450). Partnered mothers included women who reported living as married or married with the spouse in the household (n = 832; weighted sample represents n = 8,614,362). Weighted logistic regression was used to compare the prevalence of CVD risk factors in lone (43%) ver sus partnered (57%) mothers. Multivariate modeling was used to examine the relationship between partner status, CVD risks, and Coronary Heart Disease (CHD) events. Compared with partnered mothers, lone mothers were less educated and reported lower levels of income, health, and social support; and they were more likely to report non-White ethnicity. Lone mothers were more likely to be current smokers, overweight or obese, and physically active than partnered mothers. Those with clinical risks for CVD, including diabetes, elevated C-reactive protein, hypercholesterolemia, or hypertension, or all of these were more likely to be lone mothers. After adjusting for age, we found that mothers who had experienced a CVD event (MI, CHF, or stroke) were 3.3 times more likely to be a lone mother than a partnered mother (95% confidence interval (CI) 3.24, 3.31). Lone mothers are at increased risk for CVD. Health professionals and lone mothers should collaborate in the development of programs and policies not only to reduce lone mothers' risk for CVD, but also improve their conditions of living. Support was received from Heart & Stroke Foundation of Canada, NINR Grant #2 P30 NR04001.

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Appraising and Funding Participatory Research in Health Promotion
  • Jul 1, 2006
  • International Quarterly of Community Health Education
  • M Anne George + 2 more

Participatory action research combines research, education and social action. Each of these elements reflects health education research and practice. Indeed, health education, health promotion and participatory research have converged in these respects. Participatory research is well suited to the philosophies and theories underpinning community-based health education and health promotion. The nature of participatory research is such that funding agencies, especially those awarding research funds, tend to be challenged in their attempts to assess proposals. This is true at least for those agencies operating under traditional criteria for reviewing standards, which may not be appropriate for participatory research. As well, it may reflect a broader lack of common understanding about the processes and expectations, the apparent untidiness of projects (comparing with traditional research) which by their nature offer no standard methods, deadlines, procedures or predetermined outcome measures. The Study of Participatory Research in Health Promotion [1], commissioned by the Royal Society of Canada, attempted to clarify the topic by providing a working definition and a set of guidelines for use by funding agencies when appraising projects purporting to be participatory research. The guidelines emphasize how the nominal ways of conducting health research in populations need to adapt to meet the educational and policy expectations of participatory research. The study also examined current practical examples of participatory research in the field of health promotion in Canada. This summary of the results of the project provides detailed guidelines flowing from a review of experience in the field and consultation with groups engaged in participatory research.

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  • Cite Count Icon 26
  • 10.2190/c1b5-7ppe-7tyl-7yn8
Appraising and Funding Participatory Research in Health Promotion
  • Jul 1, 1998
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  • M Anne George + 2 more

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Preeclampsia: Exposing Future Cardiovascular Risk in Mothers and Their Children
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  • Cindy M Anderson

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  • Research Article
  • Cite Count Icon 39
  • 10.1186/s12887-022-03391-2
What is the state of children’s participation in qualitative research on health interventions?: a scoping study
  • Jun 4, 2022
  • BMC Pediatrics
  • Jean M Hunleth + 4 more

BackgroundChildren are the focus of numerous health interventions throughout the world, yet the extent of children’s meaningful participation in research that informs the adaptation, implementation, and evaluation of health interventions is not known. We examine the type, extent, and meaningfulness of children’s participation in research in qualitative health intervention research.MethodA scoping study was conducted of qualitative published research with children (ages 6–11 years) carried out as part of health intervention research. Following Arksey and O’Malley’s scoping study methodology and aligned with the PRISMA-ScR guidelines on the reporting of scoping reviews, the authors searched, charted, collated, and summarized the data, and used descriptive and content analysis techniques. Ovid MEDLINE was searched from 1 January 2007 to 2 July 2018 using the keywords children, health intervention, participation, and qualitative research. Study selection and data extraction were carried out by two reviewers independently.ResultsOf 14,799 articles screened, 114 met inclusion criteria and were included. The study identified trends in when children were engaged in research (e.g., post-implementation rather than pre-implementation), in topical (e.g., focus on lifestyle interventions to prevent adult disease) and geographical (e.g., high-income countries) focuses, and in qualitative methods used (e.g., focus group). While 78 studies demonstrated meaningful engagement of children according to our criteria, there were substantial reporting gaps and there was an emphasis on older age (rather than experience) as a marker of capability and expertise.ConclusionsDespite evidence of children’s meaningful participation, topical, geographical, and methodological gaps were identified, as was the need to strengthen researchers’ skills in interpreting and representing children’s perspectives and experiences. Based on these findings, the authors present a summary reflective guide to support researchers toward more meaningful child participation in intervention research.

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  • 10.1071/py23178
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  • Australian Journal of Primary Health
  • Aysegül Ilgaz + 2 more

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  • Cite Count Icon 17
  • 10.1037/hea0000285
Maternal relationship during adolescence predicts cardiovascular disease risk in adulthood.
  • Apr 1, 2016
  • Health Psychology
  • Jenalee R Doom + 2 more

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  • Cite Count Icon 247
  • 10.1161/cir.0b013e31828f8a94
American Heart Association Guide for Improving Cardiovascular Health at the Community Level, 2013 Update
  • Mar 21, 2013
  • Circulation
  • Thomas A Pearson + 18 more

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  • Research Article
  • Cite Count Icon 1
  • 10.35844/001c.90162
Community Harm Risk Assessment Review Board and a Reflective Praxis Guide as a Radical Participatory Process for Harm Reduction in Participatory Action Research and Evaluation
  • Dec 27, 2023
  • Journal of Participatory Research Methods
  • Elizabeth Mcgee + 3 more

This paper calls for the critical and ongoing examination of the often invisible harm that occurs in traditional participatory research (and evaluation) efforts. The authors argue that this harm is caused by and must be understood within the context of white supremacist and colonial systems that inform practice standards and norms. In response, we introduce a Community Harm Risk Assessment (CHRA) Reflective Praxis Guide grounded in principles of Diversity, Equity, Inclusion, and Justice (DEIJ) and trauma-informed practices as a radical participatory process for harm reduction in evaluation and participatory research. This new approach is explored in the context of opening a Center to support the implementation of the CHRA and a Community Harm Risk Assessment Review Board (CHRARB), an initiative motivated by the lead author’s nearly two decades of experience in conventional participatory research (and evaluation) methods and observing how these methods and the misuse of these methods, can cause more harm than healing to individuals and communities intended to benefit through our work. This paper will provide an overview of the literature that speaks to observed limitations currently present in participatory research methods, share harmful practices present in participatory research (and evaluation) work, and introduce the Center, CHRARB, and CHRA reflective praxis guide for practitioners, applied researchers, and evaluators to address harm with more intentionality in their work, as well as strategically shift research and evaluation practices away from colonial and white supremacist norms.

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  • 10.1111/j.1553-2712.2011.01283.x
A Qualitative Assessment of Factors That Influence Emergency Medical Services Partnerships in Prehospital Research
  • Feb 1, 2012
  • Academic Emergency Medicine
  • Julie C Leonard + 10 more

Recent efforts to increase emergency medical services (EMS) prehospital research productivity by focusing on reducing systems-related barriers to research participation have had limited effect. The objective of this study was to explore the barriers and motivators to participating in research at the agency and provider levels and to solicit suggestions for improving the success of prehospital research projects. The authors conducted a qualitative exploratory study of EMS personnel using focus group and focused interview methodology. EMS personnel affiliated with the Pediatric Emergency Care Applied Research Network (PECARN) hospitals were selected for participation using a purposive sampling plan. Exploratory questioning identified identified factors that influence participation in research and suggestions for ensuring successful research partnerships. Through iterative coding and analysis, the factors and suggestions that emerged from the data were organized into a behavioral change planning model. Fourteen focus groups were conducted, involving 88 EMS prehospital providers from 11 agencies. Thirty-five in-depth interviews with EMS administrators and researchers were also conducted. This sample was representative of prehospital personnel servicing the PECARN catchment area and was sufficient for analytical saturation. From the transcripts, the authors identified 17 barriers and 12 motivators to EMS personnel participation in research. Central to these data were patient safety, clarity of research purpose, benefits, liability, professionalism, research training, communication with the research team, reputation, administrators' support, and organizational culture. Interviewees also made 29 suggestions for increasing EMS personnel participation in research. During data analysis, the PRECEDE/PROCEED planning model was chosen for behavioral change to organize the data. Important to this model, factors and suggestions were mapped into those that predispose (knowledge, attitudes, and beliefs), reinforce (social support and norms), and/or enable (organizational) the participation in prehospital research. This study identified factors that influence the participation of EMS personnel in research and gathered suggestions for improvement. These findings were organized into the PRECEDE/PROCEED planning model that may help researchers successfully plan, implement, and complete prehospital research projects. The authors provide guidance to improve the research process including directly involving EMS providers throughout, a strong theme that emerged from the data. Future work is needed to determine the validity of this model and to assess if these findings are generalizable across prehospital settings other than those affiliated with PECARN.

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  • Cite Count Icon 509
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Racial-Ethnic Disparities in Stroke Care: The American Experience
  • May 26, 2011
  • Stroke
  • Salvador Cruz-Flores + 13 more

Our goal is to describe the effect of race and ethnicity on stroke epidemiology, personal beliefs, access to care, response to treatment, and participation in clinical research. In addition, we seek to determine the state of knowledge on the main factors that may explain disparities in stroke care, with the goal of identifying gaps in knowledge to guide future research. The intended audience includes physicians, nurses, other healthcare professionals, and policy makers. Members of the writing group were appointed by the American Heart Association Stroke Council Scientific Statement Oversight Committee and represent different areas of expertise in relation to racial-ethnic disparities in stroke care. The writing group reviewed the relevant literature, with an emphasis on reports published since 1972. The statement was approved by the writing group; the statement underwent peer review, then was approved by the American Heart Association Science Advisory and Coordinating Committee. There are limitations in the definitions of racial and ethnic categories currently in use. For the purpose of this statement, we used the racial categories defined by the US federal government: white, black or African American, Asian, American Indian/Alaskan Native, and Native Hawaiian/other Pacific Islander. There are 2 ethnic categories: people of Hispanic/Latino origin or not of Hispanic/Latino origin. There are differences in the distribution of the burden of risk factors, stroke incidence and prevalence, and stroke mortality among different racial and ethnic groups. In addition, there are disparities in stroke care between minority groups compared with whites. These disparities include lack of awareness of stroke symptoms and signs and lack of knowledge about the need for urgent treatment and the causal role of risk factors. There are also differences in attitudes, beliefs, and compliance among minorities compared with whites. Differences in socioeconomic status and insurance coverage, mistrust of the healthcare system, the relatively limited number of providers who are members of minority groups, and system limitations may contribute to disparities in access to or quality of care, which in turn might result in different rates of stroke morbidity and mortality. Cultural and language barriers probably also contribute to some of these disparities. Minorities use emergency medical services systems less, are often delayed in arriving at the emergency department, have longer waiting times in the emergency department, and are less likely to receive thrombolysis for acute ischemic stroke. Although unmeasured factors may play a role in these delays, the presence of bias in the delivery of care cannot be excluded. Minorities have equal access to rehabilitation services, although they experience longer stays and have poorer functional status than whites. Minorities are inadequately treated with both primary and secondary stroke prevention strategies compared with whites. Sparse data exist on racial-ethnic disparities in access to surgical care after intracerebral hemorrhage and subarachnoid hemorrhage. Participation of minorities in clinical research is limited. Barriers to participation in clinical research include beliefs, lack of trust, and limited awareness. Race is a contentious topic in biomedical research because race is not proven to be a surrogate for genetic constitution. There are limitations in the current definitions of race and ethnicity. Nevertheless, racial and ethnic disparities in stroke exist and include differences in the biological determinants of disease and disparities throughout the continuum of care, including access to and quality of care. Access to and participation in research is also limited among minority groups. Acknowledging the presence of disparities and understanding the factors that contribute to them are necessary first steps. More research is required to understand these differences and find solutions.

  • Research Article
  • Cite Count Icon 2
  • 10.1016/j.jadohealth.2010.07.026
Are We There Yet? Pediatric Screening for Inflammatory Biomarkers and Low Cardiorespiratory Fitness to Identify Youth at Increased Risk of Cardiovascular Disease
  • Oct 1, 2010
  • Journal of Adolescent Health
  • Costan G Magnussen + 1 more

Are We There Yet? Pediatric Screening for Inflammatory Biomarkers and Low Cardiorespiratory Fitness to Identify Youth at Increased Risk of Cardiovascular Disease

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