International Journal of Circumpolar Health, Feb 1, 2007
Objectives. Dissemination of research results to communities builds capacity of the community to ... more Objectives. Dissemination of research results to communities builds capacity of the community to understand and utilize the results. The objective of this manuscript was to propose a culturally appropriate approach to disseminate complex disease genetics research findings in small Alaska Native communities. Study Design. The Center for Alaska Native Health Research is a community-based participatory research project (CBPR) directed at understanding the interactions between genetic, nutritional and psychosocial risk factors for obesity, diabetes, and cardiovascular disease in Yup'ik Eskimos. Methods. We have consulted with regional healthcare providers, tribal leaders, and university-, local-, and national-institutional review boards to identify potential mechanisms for sharing population-based genetics research results or progress. Results. We propose a six step CBPR-approach to conducting genetics research in isolated identifiable communities. This CPBR-approach includes generating a common research question, determining community interest, recruitment, capacity building, sharing power and control, avoiding group harm, and development of culturally appropriate dissemination procedures. Conclusions. Research scientists and community members should both benefit from population-based genetics research. Although we are just beginning our discussions with regard to sharing genetics research progress and findings, we believe that it is essential move forward as co-researchers in the CBPR enterprise.
Background: In 2009 the Institute of Medicine updated its guidelines for weight gain during pregn... more Background: In 2009 the Institute of Medicine updated its guidelines for weight gain during pregnancy, in part because women of childbearing age now weigh more pre-pregnancy and tend to gain more weight during pregnancy than women did when the previous set of guidelines were released in 1990. Women who begin pregnancy overweight or obese and women who gain weight outside IOM recommendations are at risk for poor maternal and fetal health outcomes. With these concerns in mind, we examined what obstetricians communicate about gestational weight gain to their pregnant patients and how nulliparous patients perceive weight-related counseling from their obstetricians. Methods: We conducted one-on-one, semi-structured interviews with 19 nulliparous women and 7 obstetricians recruited from a single clinic at a large academic medical center in the United States. Interviews were transcribed verbatim and analyzed inductively using thematic analysis. Results: We identified 4 major themes: 1) Discussions about the amount and pace of gestational weight gain: obstetricians reported variation in the frequency and timing of weight-related discussions with patients while most patients said that weight was not emphasized by their obstetricians; 2) The content of communication about nutrition and physical activity: obstetricians said they discuss nutrition and activity with all patients while most patients reported that their obstetrician either discussed these topics in general terms or not at all; 3) Communication about postpartum weight loss: obstetricians said that they do not typically address postpartum weight loss with patients during prenatal visits while patients had concerns about postpartum weight; and 4) Patient feelings about obstetrician advice: most patients said that their obstetrician does not tend to offer "unsolicited advice" , instead offering information in response to patient questions or concerns. Women were divided about whether they desired more advice from their obstetrician on weight gain, nutrition, and activity. Conclusions: Our analysis revealed discrepancies between obstetricians' and patients' perceptions of their weight-related clinical interactions. Our findings suggest that there is a missed opportunity to use prenatal visits as opportunities to discuss healthy eating and exercise during pregnancy, the postpartum period, and beyond. Additional research on the design, implementation, and testing of interventions to address prenatal nutrition and physical activity is warranted.
Researchers have long held that fatalism (the belief in a lack of personal power or control over ... more Researchers have long held that fatalism (the belief in a lack of personal power or control over destiny or fate) constitutes a major barrier to participation in positive health behaviors and, subsequently, adversely affects health outcomes. In this paper, we present two in-depth, ethnographic studies of rural women's health decisions surrounding cancer treatments to illustrate the complexity and contestability of the long-established fatalism construct. Narrative analyses suggest that for these women, numerous and complex factors-including inadequate access to health services, a legacy of self-reliance, insufficient privacy, combined with a culturally acceptable idiom of fatalism-foster the use of, but not necessarily a rigid conviction in, the notion of fatalism.
ABSTRACT Seasonal affective disorder (SAD) is a type of depression in which symptoms occur during... more ABSTRACT Seasonal affective disorder (SAD) is a type of depression in which symptoms occur during a particular season. While physical activity has been shown to improve symptoms for depression in general populations, the relationships between physical activity and experiences of seasonality and SAD remain underexplored. We conducted a survey with adult members of a recreational gym in Fairbanks, Alaska. The survey collected self-report data on sociodemographics, health behaviours, and elements of the Seasonal Pattern Assessment Questionnaire (SPAQ). Results indicate that 18.68% of our study participants meet the criteria for winter-pattern SAD and 43.96% meet the criteria for subsyndromal SAD (“winter blues”). We conducted two regressions to understand experiences of SAD and predictors of seasonality more generally. Gender was a significant predictor of SAD, with women more likely than men to experience SAD (p = .04). Being social at the gym, whether going to the gym with others or participating in activities with others, was associated with higher seasonality than being independent at the gym (p = .03). Younger age was also associated with higher seasonality (p < .001). This study contributes new insights about the relationship between engagement in physical activities and experiences of seasonality among adults in a northern latitude.
This research explores the sociocultural and political economic contexts shaping hysterectomy exp... more This research explores the sociocultural and political economic contexts shaping hysterectomy experiences in the lives of women in one rural Appalachian county. The purpose of the study was to draw from and ethnographically contribute to a number of literatures focusing on women’s lives and health in the rural United States and Appalachia. Specifically, one aim was to extend the current literature on reproductive technologies, medicalization, gender and the body by examining these issues from the vantage point of rural women living in an economically distressed county in Central Appalachia who have undergone hysterectomy, a surgical procedure that definitively marks the end of biological reproduction for women. Given that hysterectomy is the second most common surgery for women in the United States (next to Cesarean) and one beset with controversy regarding the appropriate indications for “necessary” surgery, an ethnographic examination of the procedure was surprisingly absent from the literature. A second aim was to respond to a serious imbalance in current hysterectomy studies, which show a noticeable bias toward the experiences of urban and middle-class populations of women in non-Southern regions. A third aim was to locate and interrogate cultural assumptions about Appalachian women, gender and reproduction, including simplistic views of Appalachian women as passive, acquiescent patients or fatalistic “missing persons” in the decisions surrounding their health and well being. By exposing how these women articulate both the meanings of and their sense of control over their reproductive bodies, health, health care, and eventual hysterectomy, this study also raises broader questions about women’s active participation in medicalization processes, even when those processes are rooted in patriarchal and biomedically legitimated forms of control over the reproductive body. To realize these goals, I applied an ethnographic approach to examine how women in a rural Central Appalachian county confront and experience hysterectomy following chronic pain and/or biomedical diagnoses of reproductive diseases. Over a period of 18 months, I lived in Coal County (a pseudonym for the research site) and gathered information using a number of ethnographic research methods, including participant observation, writing field notes, conducting in-depth interviews with women and health care providers, leading one focus group, and reviewing secondary documents. The results of this study suggest that women’s hysterectomy experiences and decisions are intimately tied to gender and class relations as well as the political economy of health and health care in Coal County. The articulation of these sociocultural and political economic factors, or what I refer to as the cultural politics of Coal, shape how these women 1) conceptualize the reproductive body, 2) construct their own agency in the power dynamics surrounding their health care and hysterectomy, and 3) express the relationship between hysterectomy and their identities as women, their sexualities, and their relationships with men. Enduring the pain of reproductive illnesses as well as the often overwhelming social and political economic constraints of life in Coal, the women in this study framed their hysterectomy experiences in complicated and multiple ways, often simultaneously voicing subjection, authority, skepticism, and satisfaction.
e18060Background: Access and adherence to breast cancer screening guidelines is challenging for w... more e18060Background: Access and adherence to breast cancer screening guidelines is challenging for women with language, cultural, and financial barriers. We partnered with several community sites in t...
WMJ : official publication of the State Medical Society of Wisconsin, 2018
Milwaukee, a city characterized by high rates of racial segregation and a growing immigrant popul... more Milwaukee, a city characterized by high rates of racial segregation and a growing immigrant population, has large race-based breast cancer survival disparities. To address these disparities, breast health education workshops were offered through a community-academic partnership (CAP) to women from various ethnic backgrounds. This paper explores attendance, satisfaction, and rates of screening mammography among workshop attendees. Partnerships were formed with community-based organizations, a mobile mammography unit, and the Wisconsin Well Woman Program, a state-supported program providing free mammograms. Multilingual staff provided monthly breast health education workshops at community settings and coordinated transportation. Participants completed surveys that included demographics, prior screening history, barriers to screening, and program evaluation. Descriptive statistics were used to summarize and analyze data. Over a 24-month period, 493 women-most of whom sought services at...
Background: Native American communities suffer disproportionately greater burdens of obesity and ... more Background: Native American communities suffer disproportionately greater burdens of obesity and related chronic diseases due to acculturative changes in diet and physical activity. The Center for Alaska Native Health Research works with Yupik communities in southwest Alaska on studies aiming to prevent and reduce health disparities associated with obesity, including the study of body weight perceptions and risk appraisal for diabetes. Objectives: This study compares body weight perceptions of Yupik adults by gender and age to explore whether body image ideals are changing with the increasing influence of kussaq culture (non-native or western way of life). Methods: Specially designed body image cards portraying 9 men and 9 women of varying BMIs from underweight to morbidly obese were shown to 58 adults (28 women and 30 men, ages 18-75). Data including BMI and proxy measures of acculturation were also collected. Using SAS, responses were compared by age group and gender. Results: Bot...
Introduction: To ensure the ethics and integrity of the research in which they and their communit... more Introduction: To ensure the ethics and integrity of the research in which they and their communities are engaged, a growing number of community groups have developed their own research ethic review processes that operate independently or in conjunction with institution-based Institutional Review Board (IRBs). Our prior study identified 109 community groups across the U.S. with such processes in place. We conducted a national collaborative study documenting the contributions they make to ensure the ethics and integrity of community-engaged research (CEnR). To identify best practices in ensuring the ethics of CEnR, CCPH partnered with five community-based organizations to gain an in-depth understanding of how their review processes function. Approach: In year one, we analyzed data obtained through structured interviews, focus groups and reviews of documents from 2 community IRBs and 3 community-based research review committees. In year two, we conducted a cross-case analysis drawing o...
Introduction: To ensure the ethics and integrity of the research in which they and their communit... more Introduction: To ensure the ethics and integrity of the research in which they and their communities are engaged, a growing number of community groups have developed their own research ethic review processes that operate independently or in conjunction with institution-based Institutional Review Board (IRBs). Our prior study identified 109 community groups across the U.S. with such processes in place. We conducted a national collaborative study documenting the contributions they make to ensure the ethics and integrity of community-engaged research (CEnR). To gain an in-depth understanding of how these review processes function in comparison to institution-based IRBs, CCPH partnered with five community-based organizations to conduct a cross-case analysis. Approach: In year one, we analyzed data obtained through structured interviews, focus groups and reviews of documents from 2 community IRBs and 3 community-based research review committees. We also interviewed community and academic...
Introduction: To ensure the ethics of the research in which they and their communities are engage... more Introduction: To ensure the ethics of the research in which they and their communities are engaged, a growing number of community groups have developed their own research ethic review processes that operate independently or in conjunction with institution-based Institutional Review Board (IRBs). Our prior study identified 109 community groups across the U.S. with such processes in place. We conducted a national collaborative study documenting the contributions they make to ensure the ethics and integrity of community-engaged research (CEnR). To gain an in-depth understanding of ethical issues they consider and how these may be applied to assessment of CEnR, CCPH partnered with five community-based organizations to conduct a cross-case analysis. Approach: In year one, we analyzed data obtained through structured interviews, focus groups and reviews of documents from 2 community IRBs and 3 community-based research review committees. In year two, we conducted a cross-case analysis draw...
As partners in the research process, a growing number of community groups are implementing review... more As partners in the research process, a growing number of community groups are implementing review processes for research ethics that operate independently, in parallel or in conjunction with institution-based institutional review boards (IRBs). With the exception of federally recognized community IRBs, these are not mandated or regulated. With support from the Greenwall Foundation, we conducted the first systematic study of community-based processes for research ethics review. We identified and described 109 operating and 30 emerging community-based processes for research ethics review in the U.S and found a number of reasons for their development, including (a) enhancing community protections in research by assuring that community considerations be taken into account, (b) assuring community ownership of the review process; and (c) responding to dissatisfaction with institution-based IRB processes. The reported benefits of having a review process included assuring that the research ...
Introduction: To ensure the ethics and integrity of the research in which they and their communit... more Introduction: To ensure the ethics and integrity of the research in which they and their communities are engaged, a growing number of community groups have developed their own research ethic review processes that operate independently or in conjunction with institution-based Institutional Review Board (IRBs). Our prior study identified 109 community groups across the U.S. with such processes in place. Our current national collaborative study seeks to document the actual contributions they make to ensuring the ethics and integrity of community-based participatory research (CBPR). Approach: We analyzed data obtained through structured interviews, focus groups and reviews of documents from 2 community IRBs and 3 community-based research review committees. We also interviewed community and academic members of teams whose research protocols were reviewed by one of the 5 community-based processes in our study as well as an institution-based IRB. Results: Case studies of 5 community-based ...
In Western nations, cardiovascular disease (CVD) is the leading cause of death and disability, an... more In Western nations, cardiovascular disease (CVD) is the leading cause of death and disability, and myocardial infarction (MI or heart attack) is responsible for the most significant proportion of these deaths. Over the past decades, however, mortality rates from CVD in general and MI specifically have been decreasing due in large part to the proliferation of time-dependent therapies. As their description suggests, the use of such effective therapies is associated with early hospital presentation, thus reducing treatment time has significant benefits. Previous research most often has focused on sociodemographic or clinical factors influential in treatment timing, while the activities that individuals undertake during the critical hours prior to presentation for formal medical treatment remain insufficiently examined. Since self-care activities provide a window into how cardiac symptom sufferers conceptualize and act on their distress and, subsequently, how these conceptualizations sh...
Women in the USA are at disproportionate risk of dying from a myocardial infarction (MI), of suff... more Women in the USA are at disproportionate risk of dying from a myocardial infarction (MI), of suffering disabilities following an MI, and of reinfarcting and dying within a year of their initial MI. Various explanations, including women's older age at clinical manifestation of coronary heart disease (CHD) and higher likelihood of co-morbidities, have been offered for women's heightened risk of poor outcomes. Less frequently, research has focused on examining women's prolonged time elapse between symptom onset and biomedical treatment, a phenomenon that renders women less likely to undergo lifesaving reperfusion strategies. [1] To explore factors and circumstances that may shape CHD time to treatment, 40 middle age and older women living in Kentucky, USA, half with diagnosed CHD and half with chronic conditions considered to be risk factors for CHD, participated in a series of in-depth interviews. While much of the existing CHD literature implicates individual responsibility as the determining feature in time to treatment, these women's narratives suggested that treatment decisions inextricably are linked to broader social and structural constraints. Such supra-individual forces that shape the CHD experiences of women include the social construction of ''standard'' cardiac symptoms based on male norms that ultimately confuse symptom detection, women's negative encounters with health care providers who discount their knowledge, the competing social demands women face when threatened by a serious illness, and structural barriers delimiting women's health care choices.
In response to the serious toll diabetes takes on health and resources, researchers increasingly ... more In response to the serious toll diabetes takes on health and resources, researchers increasingly are examining physical and psychological pathways that affect and are affected by diabetes, including stress. Although biomedical researchers and practitioners are beginning to recognize the association between stress and diabetes onset and management, laypersons have long-standing and extensive insights into the multiple ways in which stress is associated with the diabetes disease process. In this article, we examine lay perspectives on stress and diabetes among a multiethnic sample of 80 adults. Participants suggest varying arenas in which stress intersects with diabetes, including stress as implicated in the origin of diabetes, as a threat to maintaining glycemic control, as a challenge to self-management, and as a precursor to and a consequence of diabetes complications. An improved understanding of such perspectives may enhance appropriate disease management and develop a more valid conceptualization of stress in research efforts. [diabetes mellitus, explanatory models, Mexican Americans, African Americans, Great Lakes Indians, rural residents]
Researchers have long held that fatalism (the belief in a lack of personal power or control over ... more Researchers have long held that fatalism (the belief in a lack of personal power or control over destiny or fate) constitutes a major barrier to participation in positive health behaviors and, subsequently, adversely affects health outcomes. In this paper, we present two in-depth, ethnographic studies of rural women's health decisions surrounding cancer treatments to illustrate the complexity and contestability of the long-established fatalism construct. Narrative analyses suggest that for these women, numerous and complex factors-including inadequate access to health services, a legacy of self-reliance, insufficient privacy, combined with a culturally acceptable idiom of fatalism-foster the use of, but not necessarily a rigid conviction in, the notion of fatalism.
In this article, we explore the flexible configuration of a local knowledge system about hyperten... more In this article, we explore the flexible configuration of a local knowledge system about hypertension symptoms, foregrounding it against prevailing biomedical assertions regarding the asymptomatic or "silent" nature of hypertension. The complex and coherent knowledge system held by older African Americans living in a southern, rural community stands in contrast to the current scientific discourse and local biomedical perspectives on hypertension symptomatology. The older African American participants in this study apply local knowledge of hypertension symptomatology to make health decisions nearly every day. Despite this, most biomedical practitioners maintain a distance from these lay sources of knowledge, often remaining stalwart in their refusal to recognize the existence or influence of symptoms. We conclude that authoritative knowledge ultimately lies in the minds and bodies of the elders, who have encountered symptoms as guideposts that direct action, rather than wit...
International Journal of Circumpolar Health, Feb 1, 2007
Objectives. Dissemination of research results to communities builds capacity of the community to ... more Objectives. Dissemination of research results to communities builds capacity of the community to understand and utilize the results. The objective of this manuscript was to propose a culturally appropriate approach to disseminate complex disease genetics research findings in small Alaska Native communities. Study Design. The Center for Alaska Native Health Research is a community-based participatory research project (CBPR) directed at understanding the interactions between genetic, nutritional and psychosocial risk factors for obesity, diabetes, and cardiovascular disease in Yup'ik Eskimos. Methods. We have consulted with regional healthcare providers, tribal leaders, and university-, local-, and national-institutional review boards to identify potential mechanisms for sharing population-based genetics research results or progress. Results. We propose a six step CBPR-approach to conducting genetics research in isolated identifiable communities. This CPBR-approach includes generating a common research question, determining community interest, recruitment, capacity building, sharing power and control, avoiding group harm, and development of culturally appropriate dissemination procedures. Conclusions. Research scientists and community members should both benefit from population-based genetics research. Although we are just beginning our discussions with regard to sharing genetics research progress and findings, we believe that it is essential move forward as co-researchers in the CBPR enterprise.
Background: In 2009 the Institute of Medicine updated its guidelines for weight gain during pregn... more Background: In 2009 the Institute of Medicine updated its guidelines for weight gain during pregnancy, in part because women of childbearing age now weigh more pre-pregnancy and tend to gain more weight during pregnancy than women did when the previous set of guidelines were released in 1990. Women who begin pregnancy overweight or obese and women who gain weight outside IOM recommendations are at risk for poor maternal and fetal health outcomes. With these concerns in mind, we examined what obstetricians communicate about gestational weight gain to their pregnant patients and how nulliparous patients perceive weight-related counseling from their obstetricians. Methods: We conducted one-on-one, semi-structured interviews with 19 nulliparous women and 7 obstetricians recruited from a single clinic at a large academic medical center in the United States. Interviews were transcribed verbatim and analyzed inductively using thematic analysis. Results: We identified 4 major themes: 1) Discussions about the amount and pace of gestational weight gain: obstetricians reported variation in the frequency and timing of weight-related discussions with patients while most patients said that weight was not emphasized by their obstetricians; 2) The content of communication about nutrition and physical activity: obstetricians said they discuss nutrition and activity with all patients while most patients reported that their obstetrician either discussed these topics in general terms or not at all; 3) Communication about postpartum weight loss: obstetricians said that they do not typically address postpartum weight loss with patients during prenatal visits while patients had concerns about postpartum weight; and 4) Patient feelings about obstetrician advice: most patients said that their obstetrician does not tend to offer "unsolicited advice" , instead offering information in response to patient questions or concerns. Women were divided about whether they desired more advice from their obstetrician on weight gain, nutrition, and activity. Conclusions: Our analysis revealed discrepancies between obstetricians' and patients' perceptions of their weight-related clinical interactions. Our findings suggest that there is a missed opportunity to use prenatal visits as opportunities to discuss healthy eating and exercise during pregnancy, the postpartum period, and beyond. Additional research on the design, implementation, and testing of interventions to address prenatal nutrition and physical activity is warranted.
Researchers have long held that fatalism (the belief in a lack of personal power or control over ... more Researchers have long held that fatalism (the belief in a lack of personal power or control over destiny or fate) constitutes a major barrier to participation in positive health behaviors and, subsequently, adversely affects health outcomes. In this paper, we present two in-depth, ethnographic studies of rural women's health decisions surrounding cancer treatments to illustrate the complexity and contestability of the long-established fatalism construct. Narrative analyses suggest that for these women, numerous and complex factors-including inadequate access to health services, a legacy of self-reliance, insufficient privacy, combined with a culturally acceptable idiom of fatalism-foster the use of, but not necessarily a rigid conviction in, the notion of fatalism.
ABSTRACT Seasonal affective disorder (SAD) is a type of depression in which symptoms occur during... more ABSTRACT Seasonal affective disorder (SAD) is a type of depression in which symptoms occur during a particular season. While physical activity has been shown to improve symptoms for depression in general populations, the relationships between physical activity and experiences of seasonality and SAD remain underexplored. We conducted a survey with adult members of a recreational gym in Fairbanks, Alaska. The survey collected self-report data on sociodemographics, health behaviours, and elements of the Seasonal Pattern Assessment Questionnaire (SPAQ). Results indicate that 18.68% of our study participants meet the criteria for winter-pattern SAD and 43.96% meet the criteria for subsyndromal SAD (“winter blues”). We conducted two regressions to understand experiences of SAD and predictors of seasonality more generally. Gender was a significant predictor of SAD, with women more likely than men to experience SAD (p = .04). Being social at the gym, whether going to the gym with others or participating in activities with others, was associated with higher seasonality than being independent at the gym (p = .03). Younger age was also associated with higher seasonality (p < .001). This study contributes new insights about the relationship between engagement in physical activities and experiences of seasonality among adults in a northern latitude.
This research explores the sociocultural and political economic contexts shaping hysterectomy exp... more This research explores the sociocultural and political economic contexts shaping hysterectomy experiences in the lives of women in one rural Appalachian county. The purpose of the study was to draw from and ethnographically contribute to a number of literatures focusing on women’s lives and health in the rural United States and Appalachia. Specifically, one aim was to extend the current literature on reproductive technologies, medicalization, gender and the body by examining these issues from the vantage point of rural women living in an economically distressed county in Central Appalachia who have undergone hysterectomy, a surgical procedure that definitively marks the end of biological reproduction for women. Given that hysterectomy is the second most common surgery for women in the United States (next to Cesarean) and one beset with controversy regarding the appropriate indications for “necessary” surgery, an ethnographic examination of the procedure was surprisingly absent from the literature. A second aim was to respond to a serious imbalance in current hysterectomy studies, which show a noticeable bias toward the experiences of urban and middle-class populations of women in non-Southern regions. A third aim was to locate and interrogate cultural assumptions about Appalachian women, gender and reproduction, including simplistic views of Appalachian women as passive, acquiescent patients or fatalistic “missing persons” in the decisions surrounding their health and well being. By exposing how these women articulate both the meanings of and their sense of control over their reproductive bodies, health, health care, and eventual hysterectomy, this study also raises broader questions about women’s active participation in medicalization processes, even when those processes are rooted in patriarchal and biomedically legitimated forms of control over the reproductive body. To realize these goals, I applied an ethnographic approach to examine how women in a rural Central Appalachian county confront and experience hysterectomy following chronic pain and/or biomedical diagnoses of reproductive diseases. Over a period of 18 months, I lived in Coal County (a pseudonym for the research site) and gathered information using a number of ethnographic research methods, including participant observation, writing field notes, conducting in-depth interviews with women and health care providers, leading one focus group, and reviewing secondary documents. The results of this study suggest that women’s hysterectomy experiences and decisions are intimately tied to gender and class relations as well as the political economy of health and health care in Coal County. The articulation of these sociocultural and political economic factors, or what I refer to as the cultural politics of Coal, shape how these women 1) conceptualize the reproductive body, 2) construct their own agency in the power dynamics surrounding their health care and hysterectomy, and 3) express the relationship between hysterectomy and their identities as women, their sexualities, and their relationships with men. Enduring the pain of reproductive illnesses as well as the often overwhelming social and political economic constraints of life in Coal, the women in this study framed their hysterectomy experiences in complicated and multiple ways, often simultaneously voicing subjection, authority, skepticism, and satisfaction.
e18060Background: Access and adherence to breast cancer screening guidelines is challenging for w... more e18060Background: Access and adherence to breast cancer screening guidelines is challenging for women with language, cultural, and financial barriers. We partnered with several community sites in t...
WMJ : official publication of the State Medical Society of Wisconsin, 2018
Milwaukee, a city characterized by high rates of racial segregation and a growing immigrant popul... more Milwaukee, a city characterized by high rates of racial segregation and a growing immigrant population, has large race-based breast cancer survival disparities. To address these disparities, breast health education workshops were offered through a community-academic partnership (CAP) to women from various ethnic backgrounds. This paper explores attendance, satisfaction, and rates of screening mammography among workshop attendees. Partnerships were formed with community-based organizations, a mobile mammography unit, and the Wisconsin Well Woman Program, a state-supported program providing free mammograms. Multilingual staff provided monthly breast health education workshops at community settings and coordinated transportation. Participants completed surveys that included demographics, prior screening history, barriers to screening, and program evaluation. Descriptive statistics were used to summarize and analyze data. Over a 24-month period, 493 women-most of whom sought services at...
Background: Native American communities suffer disproportionately greater burdens of obesity and ... more Background: Native American communities suffer disproportionately greater burdens of obesity and related chronic diseases due to acculturative changes in diet and physical activity. The Center for Alaska Native Health Research works with Yupik communities in southwest Alaska on studies aiming to prevent and reduce health disparities associated with obesity, including the study of body weight perceptions and risk appraisal for diabetes. Objectives: This study compares body weight perceptions of Yupik adults by gender and age to explore whether body image ideals are changing with the increasing influence of kussaq culture (non-native or western way of life). Methods: Specially designed body image cards portraying 9 men and 9 women of varying BMIs from underweight to morbidly obese were shown to 58 adults (28 women and 30 men, ages 18-75). Data including BMI and proxy measures of acculturation were also collected. Using SAS, responses were compared by age group and gender. Results: Bot...
Introduction: To ensure the ethics and integrity of the research in which they and their communit... more Introduction: To ensure the ethics and integrity of the research in which they and their communities are engaged, a growing number of community groups have developed their own research ethic review processes that operate independently or in conjunction with institution-based Institutional Review Board (IRBs). Our prior study identified 109 community groups across the U.S. with such processes in place. We conducted a national collaborative study documenting the contributions they make to ensure the ethics and integrity of community-engaged research (CEnR). To identify best practices in ensuring the ethics of CEnR, CCPH partnered with five community-based organizations to gain an in-depth understanding of how their review processes function. Approach: In year one, we analyzed data obtained through structured interviews, focus groups and reviews of documents from 2 community IRBs and 3 community-based research review committees. In year two, we conducted a cross-case analysis drawing o...
Introduction: To ensure the ethics and integrity of the research in which they and their communit... more Introduction: To ensure the ethics and integrity of the research in which they and their communities are engaged, a growing number of community groups have developed their own research ethic review processes that operate independently or in conjunction with institution-based Institutional Review Board (IRBs). Our prior study identified 109 community groups across the U.S. with such processes in place. We conducted a national collaborative study documenting the contributions they make to ensure the ethics and integrity of community-engaged research (CEnR). To gain an in-depth understanding of how these review processes function in comparison to institution-based IRBs, CCPH partnered with five community-based organizations to conduct a cross-case analysis. Approach: In year one, we analyzed data obtained through structured interviews, focus groups and reviews of documents from 2 community IRBs and 3 community-based research review committees. We also interviewed community and academic...
Introduction: To ensure the ethics of the research in which they and their communities are engage... more Introduction: To ensure the ethics of the research in which they and their communities are engaged, a growing number of community groups have developed their own research ethic review processes that operate independently or in conjunction with institution-based Institutional Review Board (IRBs). Our prior study identified 109 community groups across the U.S. with such processes in place. We conducted a national collaborative study documenting the contributions they make to ensure the ethics and integrity of community-engaged research (CEnR). To gain an in-depth understanding of ethical issues they consider and how these may be applied to assessment of CEnR, CCPH partnered with five community-based organizations to conduct a cross-case analysis. Approach: In year one, we analyzed data obtained through structured interviews, focus groups and reviews of documents from 2 community IRBs and 3 community-based research review committees. In year two, we conducted a cross-case analysis draw...
As partners in the research process, a growing number of community groups are implementing review... more As partners in the research process, a growing number of community groups are implementing review processes for research ethics that operate independently, in parallel or in conjunction with institution-based institutional review boards (IRBs). With the exception of federally recognized community IRBs, these are not mandated or regulated. With support from the Greenwall Foundation, we conducted the first systematic study of community-based processes for research ethics review. We identified and described 109 operating and 30 emerging community-based processes for research ethics review in the U.S and found a number of reasons for their development, including (a) enhancing community protections in research by assuring that community considerations be taken into account, (b) assuring community ownership of the review process; and (c) responding to dissatisfaction with institution-based IRB processes. The reported benefits of having a review process included assuring that the research ...
Introduction: To ensure the ethics and integrity of the research in which they and their communit... more Introduction: To ensure the ethics and integrity of the research in which they and their communities are engaged, a growing number of community groups have developed their own research ethic review processes that operate independently or in conjunction with institution-based Institutional Review Board (IRBs). Our prior study identified 109 community groups across the U.S. with such processes in place. Our current national collaborative study seeks to document the actual contributions they make to ensuring the ethics and integrity of community-based participatory research (CBPR). Approach: We analyzed data obtained through structured interviews, focus groups and reviews of documents from 2 community IRBs and 3 community-based research review committees. We also interviewed community and academic members of teams whose research protocols were reviewed by one of the 5 community-based processes in our study as well as an institution-based IRB. Results: Case studies of 5 community-based ...
In Western nations, cardiovascular disease (CVD) is the leading cause of death and disability, an... more In Western nations, cardiovascular disease (CVD) is the leading cause of death and disability, and myocardial infarction (MI or heart attack) is responsible for the most significant proportion of these deaths. Over the past decades, however, mortality rates from CVD in general and MI specifically have been decreasing due in large part to the proliferation of time-dependent therapies. As their description suggests, the use of such effective therapies is associated with early hospital presentation, thus reducing treatment time has significant benefits. Previous research most often has focused on sociodemographic or clinical factors influential in treatment timing, while the activities that individuals undertake during the critical hours prior to presentation for formal medical treatment remain insufficiently examined. Since self-care activities provide a window into how cardiac symptom sufferers conceptualize and act on their distress and, subsequently, how these conceptualizations sh...
Women in the USA are at disproportionate risk of dying from a myocardial infarction (MI), of suff... more Women in the USA are at disproportionate risk of dying from a myocardial infarction (MI), of suffering disabilities following an MI, and of reinfarcting and dying within a year of their initial MI. Various explanations, including women's older age at clinical manifestation of coronary heart disease (CHD) and higher likelihood of co-morbidities, have been offered for women's heightened risk of poor outcomes. Less frequently, research has focused on examining women's prolonged time elapse between symptom onset and biomedical treatment, a phenomenon that renders women less likely to undergo lifesaving reperfusion strategies. [1] To explore factors and circumstances that may shape CHD time to treatment, 40 middle age and older women living in Kentucky, USA, half with diagnosed CHD and half with chronic conditions considered to be risk factors for CHD, participated in a series of in-depth interviews. While much of the existing CHD literature implicates individual responsibility as the determining feature in time to treatment, these women's narratives suggested that treatment decisions inextricably are linked to broader social and structural constraints. Such supra-individual forces that shape the CHD experiences of women include the social construction of ''standard'' cardiac symptoms based on male norms that ultimately confuse symptom detection, women's negative encounters with health care providers who discount their knowledge, the competing social demands women face when threatened by a serious illness, and structural barriers delimiting women's health care choices.
In response to the serious toll diabetes takes on health and resources, researchers increasingly ... more In response to the serious toll diabetes takes on health and resources, researchers increasingly are examining physical and psychological pathways that affect and are affected by diabetes, including stress. Although biomedical researchers and practitioners are beginning to recognize the association between stress and diabetes onset and management, laypersons have long-standing and extensive insights into the multiple ways in which stress is associated with the diabetes disease process. In this article, we examine lay perspectives on stress and diabetes among a multiethnic sample of 80 adults. Participants suggest varying arenas in which stress intersects with diabetes, including stress as implicated in the origin of diabetes, as a threat to maintaining glycemic control, as a challenge to self-management, and as a precursor to and a consequence of diabetes complications. An improved understanding of such perspectives may enhance appropriate disease management and develop a more valid conceptualization of stress in research efforts. [diabetes mellitus, explanatory models, Mexican Americans, African Americans, Great Lakes Indians, rural residents]
Researchers have long held that fatalism (the belief in a lack of personal power or control over ... more Researchers have long held that fatalism (the belief in a lack of personal power or control over destiny or fate) constitutes a major barrier to participation in positive health behaviors and, subsequently, adversely affects health outcomes. In this paper, we present two in-depth, ethnographic studies of rural women's health decisions surrounding cancer treatments to illustrate the complexity and contestability of the long-established fatalism construct. Narrative analyses suggest that for these women, numerous and complex factors-including inadequate access to health services, a legacy of self-reliance, insufficient privacy, combined with a culturally acceptable idiom of fatalism-foster the use of, but not necessarily a rigid conviction in, the notion of fatalism.
In this article, we explore the flexible configuration of a local knowledge system about hyperten... more In this article, we explore the flexible configuration of a local knowledge system about hypertension symptoms, foregrounding it against prevailing biomedical assertions regarding the asymptomatic or "silent" nature of hypertension. The complex and coherent knowledge system held by older African Americans living in a southern, rural community stands in contrast to the current scientific discourse and local biomedical perspectives on hypertension symptomatology. The older African American participants in this study apply local knowledge of hypertension symptomatology to make health decisions nearly every day. Despite this, most biomedical practitioners maintain a distance from these lay sources of knowledge, often remaining stalwart in their refusal to recognize the existence or influence of symptoms. We conclude that authoritative knowledge ultimately lies in the minds and bodies of the elders, who have encountered symptoms as guideposts that direct action, rather than wit...
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Papers by Elaine Drew