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BACKGROUND: Patient navigation is an evidence-based intervention that reduces cancer health disparities by directly addressing the barriers to care for underserved patients with cancer. Variability in design and integration of patient navigation programs within cancer care settings has limited this intervention's utility. The implementation science evaluation framework, RE-AIM, allows quantitative and qualitative examination of effective implementation of patient navigation programs into cancer care settings. METHODS: The Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework was used to evaluate implementation of a community-focused patient navigation intervention at an NCI-designated cancer center between June 2018 and October 2021. Using a 3-month longitudinal, non-comparative measurement period, univariate and bivariate analyses were conducted to examine associations between participant-level demographics and primary (i.e., barrier reduction) and secondary (i.e., patient-reported outcomes) effectiveness outcomes. Mixed methods analyses were used to examine adoption and delivery of the intervention into the cancer center setting. Process-level analyses were used to evaluate maintenance of the intervention. RESULTS: Participants (n = 311) represented a largely underserved population, as defined by the National Cancer Institute, with the majority identifying as Hispanic/Latino, having a household income of $35,000 or less, and being enrolled in Medicaid. Participants were diagnosed with a variety of cancer types and most had advanced staged cancers. Pre-post-intervention analyses indicated significant reduction from pre-intervention assessments in the average number of reported barriers, F(1, 207) = 117.62, p < .001, as well as significant increases in patient-reported physical health, t(205) = - 6.004, p < .001, mental health, t(205) = - 3.810, p < .001, self-efficacy, t(205) = - 5.321, p < .001, and satisfaction with medical team communication, t(206) = - 2.03, p = .029. Referral patterns and qualitative data supported increased adoption and integration of the intervention into the target setting, and consistent intervention delivery metrics suggested high fidelity to intervention delivery over time. Process-level data outlined a successful transition from a grant-funded community-focused patient navigation intervention to an institution-funded program. CONCLUSIONS: This study utilized the implementation science evaluation framework, RE-AIM, to evaluate implementation of a community-focused patient navigation program. Our analyses indicate successful implementation within a cancer care setting and provide a potential guide for other oncology settings who may be interested in implementing community-focused patient navigation programs.
Subject(s)
Cancer Care Facilities , National Cancer Institute (U.S.) , Neoplasms , Patient Navigation , Humans , Patient Navigation/methods , Patient Navigation/organization & administration , Male , Female , United States , Middle Aged , Neoplasms/therapy , Cancer Care Facilities/organization & administration , Longitudinal Studies , Program Evaluation , Adult , Health Services Accessibility , AgedABSTRACT
Women with intellectual and developmental disabilities (I/DD) are less likely to receive cervical cancer screening (CCS) relative to women without disabilities. Primary care providers (PCPs) play key roles in recommending CCS. The purpose of this study was to identify factors PCPs consider when recommending and performing CCS for women with I/DD. Using a qualitative approach, in-depth semi-structured interviews (N = 13) were conducted with majority family medicine-trained PCPs. Through inductive data analysis, it was found that most PCPs reported recommending CCS; however, follow-through for performing CCS varied. PCPs attempted to align their CCS recommendations with national guidelines and provided counseling and education to families and patients about CCS while taking an individualized risk-benefit approach. Despite most PCPs reporting a lack of knowledge or training related to providing I/DD-specific care, PCPs attempted to draw upon experiences with similar populations to recommend and perform CCS. There is an opportunity to improve knowledge of PCPs related to performing CCS for women with I/DD.
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PURPOSE FOR REVIEW: This perspective piece has two goals: first, to describe issues related to artificial intelligence-based applications for cancer control as they may impact health inequities or disparities; and second, to report on a review of systematic reviews and meta-analyses of artificial intelligence-based tools for cancer control to ascertain the extent to which discussions of justice, equity, diversity, inclusion, or health disparities manifest in syntheses of the field's best evidence. RECENT FINDINGS: We found that, while a significant proportion of existing syntheses of research on AI-based tools in cancer control use formal bias assessment tools, the fairness or equitability of models is not yet systematically analyzable across studies. Issues related to real-world use of AI-based tools for cancer control, such as workflow considerations, measures of usability and acceptance, or tool architecture, are more visible in the literature, but still addressed only in a minority of reviews. Artificial intelligence is poised to bring significant benefits to a wide range of applications in cancer control, but more thorough and standardized evaluations and reporting of model fairness are required to build the evidence base for AI-based tool design for cancer and to ensure that these emerging technologies promote equitable healthcare.
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Artificial Intelligence , Diversity, Equity, Inclusion , Humans , Systematic Reviews as Topic , Social JusticeABSTRACT
This exploratory pilot study aims to provide preliminary data describing the experiences of university student cancer survivors, quantify their connection to the campus Disability Resource Center, and assess the feasibility of conducting research with this population. In this descriptive study of cancer survivor students at one large university in the southwestern U.S., online survey respondents with a history of cancer (N = 19) reported cognitive, emotional, and physical limitations that affected their educational experience. The majority (78.9%) of our participants were children, adolescents, or young adults (up to age 39) when diagnosed with cancer; all others were diagnosed between 40 and 60 years old. We found that students living with cancer have short- and long-term impairments, including memory issues that made academic performance difficult. These effects led some students to cope individually while others sought support from institutional entities or instructors. Here we document survivor experiences and propose next steps in research, which includes an intervention that builds on our preliminary findings and uses the positive deviance model.
Subject(s)
Cancer Survivors , Neoplasms , Adolescent , Adult , Child , Humans , Pilot Projects , Students , Surveys and Questionnaires , Universities , Young AdultABSTRACT
Un Abrazo Para La Familia™ (Abrazo) is a 3-h modular preventive intervention designed for low-income caregivers who are co-survivors of cancer. Here we (1) consider the benefit to survivors of cancer, that is, the care recipients who participate in Abrazo; (2) summarize the literature specific to research outreach to low-income, underserved populations when they are faced with cancer; and (3) describe current steps being taken in Southern Arizona to reach these populations via Abrazo. Specific to considering the benefit to care recipients, we analyzed care recipient data derived from three existing cohorts of Abrazo participants. Analyses of the combined cohorts of these data demonstrate that Abrazo is effective with care recipients given statistically significant higher cancer knowledge and self-efficacy scores, pre- vs. post-intervention. We can now report benefit to care recipients who participate in Abrazo. This allows us, with confidence, to expand research recruitment efforts to include care recipients as part of the Abrazo intervention in our efforts to serve low-income, underserved populations when faced with cancer.
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Neoplasms , Survivors , Caregivers , Humans , Poverty , Vulnerable PopulationsABSTRACT
Public programs such as Medicaid offer highly circumscribed access to health care for low-income patients in the United States. This article describes the work of a variety of health care staff who manage specialized cancer care for publicly insured patients who have difficulty gaining or maintaining program eligibility or for uninsured and undocumented patients who are excluded from state programs. I highlight the moral distress that occurs when clinic employees become individually responsible for reconciling policies that limit patients' access to care. I conclude that responsibility for securing access to cancer care for structurally vulnerable patients frequently falls to safety net clinics and that patients' financial constraints are visible to particular types of staff, such as non-licensed health care staff and non-physician providers, who may experience moral distress disproportionately.
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Health Personnel/psychology , Health Services Accessibility/ethics , Medicaid , Neoplasms/therapy , Vulnerable Populations , Anthropology, Medical , Humans , Morals , Occupational Stress , Stress, Psychological , Undocumented Immigrants , United StatesABSTRACT
OBJECTIVE: Our goal in this study was to determine if we could replicate initial findings when providing the intervention, Un Abrazo Para La Familia ("Abrazo"). Abrazo is a community-focused psychoeducational preventive intervention addressing the cancer information and coping needs of low-income, underserved family members of cancer survivors, developed and first implemented in Tucson, Arizona. METHODS: We used a preintervention and postintervention evaluation design to assess the effectiveness of replicating the Abrazo intervention with underserved Hispanic/Latino family members facing cancer as co-survivors. We describe lessons learned in an expansion of Abrazo from one region of the United States to another. RESULTS: Portland promotoras demonstrated that when the Abrazo intervention is provided via a culturally congruent, accessible format, the significant gains in cancer knowledge and self-efficacy reported by underserved co-survivors can be replicated. This is important because Oregon represents a US region different from Abrazo's origins in the Southwest. CONCLUSION: Our replication study provides a useful roadmap for others focusing on the psychosocial needs of Hispanic/Latino cosurviving family members of cancer. A manualized 12-hour training program based on the initial discovery and efficacy work was developed to train promotoras as a part of this study. The manual provides a clear protocol for others to replicate our intervention and evaluation procedures. Abrazo may be particularly important for family-centered care if the family does not have the cancer knowledge or self-confidence needed to fully participate.
Subject(s)
Adaptation, Psychological , Cancer Survivors/psychology , Family/psychology , Hispanic or Latino/psychology , Medically Underserved Area , Neoplasms/psychology , Vulnerable Populations , Adolescent , Adult , Child , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Neoplasms/therapy , Oregon , Parents , Poverty , Self Efficacy , United StatesABSTRACT
This article describes the development of the See Me Smoke-Free™ (SMSF) mobile health application, which uses guided imagery to support women in smoking cessation, eating a healthy diet, and increasing physical activity. Focus group discussions, with member checks, were conducted to refine the intervention content and app user interface. Data related to the context of app deployment were collected via user testing sessions and internal quality control testing, which identified and addressed functionality issues, content problems, and bugs. Interactive app features include playback of guided imagery audio files, notification pop-ups, award-sharing on social media, a tracking calendar, content resources, and direct call to the local tobacco quitline. Focus groups helped design the user interface and identified several themes for incorporation into app content, including positivity, the rewards of smoking cessation, and the integrated benefits of maintaining a healthy lifestyle. User testing improved app functionality and usability on many Android phone models. Changes to the app content and function were made iteratively by the development team as a result of focus group and user testing. Despite extensive internal and user testing, unanticipated data collection and reporting issues emerged during deployment due not only to the variety of Android software and hardware but also to individual phone settings and use.
Subject(s)
Health Promotion/methods , Mobile Applications , Smoking/psychology , Telemedicine , Adolescent , Adult , Diet, Healthy/psychology , Exercise/psychology , Female , Focus Groups , Humans , Middle Aged , Smoking Cessation/psychology , Young AdultABSTRACT
BACKGROUND: Internet and mobile health (mHealth) apps hold promise for expanding the reach of evidence-based health interventions. Research in this area is rapidly expanding. However, these studies may experience problems with recruitment and retention. Web-based and mHealth studies are in need of a wide-reaching and low-cost method of recruitment that will also effectively retain participants for the duration of the study. Online recruitment may be a low-cost and wide-reaching tool in comparison to traditional recruitment methods, although empirical evidence is limited. OBJECTIVE: This study aims to review the literature on online recruitment for, and retention in, mHealth studies. METHODS: We conducted a review of the literature of studies examining online recruitment methods as a viable means of obtaining mHealth research participants. The data sources used were PubMed, CINAHL, EbscoHost, PyscINFO, and MEDLINE. Studies reporting at least one method of online recruitment were included. A narrative approach enabled the authors to discuss the variability in recruitment results, as well as in recruitment duration and study design. RESULTS: From 550 initial publications, 12 studies were included in this review. The studies reported multiple uses and outcomes for online recruitment methods. Web-based recruitment was the only type of recruitment used in 67% (8/12) of the studies. Online recruitment was used for studies with a variety of health domains: smoking cessation (58%; 7/12) and mental health (17%; 2/12) being the most common. Recruitment duration lasted under a year in 67% (8/12) of the studies, with an average of 5 months spent on recruiting. In those studies that spent over a year (33%; 4/12), an average of 17 months was spent on recruiting. A little less than half (42%; 5/12) of the studies found Facebook ads or newsfeed posts to be an effective method of recruitment, a quarter (25%; 3/12) of the studies found Google ads to be the most effective way to reach participants, and one study showed better outcomes with traditional (eg in-person) methods of recruitment. Only one study recorded retention rates in their results, and half (50%; 6/12) of the studies recorded survey completion rates. CONCLUSIONS: Although online methods of recruitment may be promising in experimental research, more empirical evidence is needed to make specific recommendations. Several barriers to using online recruitment were identified, including participant retention. These unique challenges of virtual interventions can affect the generalizability and validity of findings from Web-based and mHealth studies. There is a need for additional research to evaluate the effectiveness of online recruitment methods and participant retention in experimental mHealth studies.
Subject(s)
Mobile Applications , Patient Selection , Social Media , Telemedicine/methods , Humans , Surveys and Questionnaires , Telemedicine/economicsABSTRACT
OBJECTIVE: This study aimed to quantitatively and qualitatively examine breast cancer screening practices, including breast self-examination (BSE), and health literacy among patients with chronic disease. DESIGN: A prospective, multi-method study conducted with a targeted purposive sample of 297 patients with diabetes and/or hypertension from four ethnic groups (Latino, Vietnamese, African American, White-American) at an urban community health center. SETTING: A federally qualified health center in Western Massachusetts. METHODS: In our four-year study, 297 participants completed cancer knowledge, beliefs, attitudes and screening utilization scales and measures of health literacy. In addition to survey data collection, we conducted in-depth interviews, focus groups, home visits, and chronic disease diaries (n=71). RESULTS: In focus groups, African American, Vietnamese and Latina participants offered interviewers an unprompted demonstration of BSE, reported regular BSE use at particular times of the month, and shared positive feelings about the screening method. In a sample where approximately 93% of women have had a mammogram, many also had performed BSE (85.2%). Women with adequate health literacy were more likely than those with inadequate health literacy to rely on it. Despite being positively inclined toward BSE, Vietnamese women, who had the lowest health literacy scores in our sample, were less likely to perform BSE regularly. CONCLUSIONS: BSE seemed to be an appealing self-care practice for many women in our study, but we conclude that proper BSE practices may not be reinforced equally across ethnic groups and among patients with low health literacy.
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Introduction: Over the past two decades the national prevalence of opioid use disorder (OUD) during pregnancy has increased more than 600%. Managing recovery from OUD during the postpartum period can be particularly challenging. Thus, we sought to identify ways to expand perinatal OUD treatment to ultimately reduce risk of postpartum return to opioid misuse. Methods: We conducted in-depth semi-structured interviews with pregnant or postpartum (i.e., gave birth within the past year) mothers who have OUD, as well as with professionals who work with this population. Interviews were audio-recorded, transcribed, and coded for themes using Dedoose software using an eco-social framework. Results: Participants included 7 mothers (median age 32 years old; 100% receiving treatment for OUD) and 11 professionals (average of 12.5 years in the field; n=7 healthcare providers, n=4 child safety caseworkers). A total of 10 major themes emerged in three levels. First, at an individual level themes included mental health, personal responsibility, and individual agency. Second, at the inter-individual level themes included support from friends and family, and other sources of support. Next, at the systems/institutional level themes included culture of healthcare systems, an ill-equipped healthcare system, social determinates of health, and continuum of care. Finally, a theme identified across all three levels included keeping mother and baby together. Conclusions: Several opportunities to enhance the support and clinical care of OUD during the perinatal period were identified. Additional work is needed to explore how these themes may be incorporated into existing programs and/or the development of new interventions.
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Background: Recovery from opioid use disorder (OUD) during the perinatal period has unique challenges. We examined services for perinatal women with OUD using the Substance Abuse and Mental Health Services Administration (SAMHSA) eight dimensions of wellness (DoW), which reflect whole person recovery. Methods: We enrolled professionals from the Southwestern United States who work with people with OUD during the perinatal period. Semi-structured in-depth interviews were conducted from April to December 2020. Participants were shown the DoW diagram (emotional, social, environmental, physical, financial, spiritual, occupational, intellectual) and asked to share how their clinic/agency addresses each DoW for perinatal people with OUD. Responses were transcribed and coded by two researchers using Dedoose software. Results: Thematic analysis revealed ways professionals (n = 11) see how the services they provide fit into the DoW. This included: the need to provide mothers emotional support with a nonjudgmental approach, groups providing social support; guidance on nutrition, self-care, and a focus on the mother/infant dyad; assistance with employment and activities of daily living; parenting education; connecting mothers with resources and grants; providing a variety of spiritual approaches depending on the desire of the mother; and navigating the interpersonal environment as well as the physical space. Conclusions: There are opportunities to expand the treatment and services provided to women with OUD during the perinatal period within all eight DoWs. Additional research is needed to identify effective strategies to incorporate these components into patient-centered, holistic care approaches.
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BACKGROUND: Women with intellectual and developmental disabilities (IDD) do not undergo breast and cervical cancer screening at the same rate as women without IDD. IDDs are diagnosed in childhood, are lifelong, and involve difficulties in adaptive behaviors and intellectual functioning. Native American women also experience disparities in breast and cervical cancer screenings. Despite known disparities, women with IDD are often not included in health promotion programs, and there is a need for evidence-based programming for those with intersectional identities, such as Native American women with IDD. OBJECTIVE: This study aims to assess the feasibility and acceptability of My Health My Choice (MHMC), an adaptation of the Women Be Healthy 2 program. There are 2 parts to the study: adaptation of the Women Be Healthy 2 program and feasibility and acceptability testing of MHMC. METHODS: Individuals aged over 18 years who identify as Native American females with IDD and their caregivers (N=30 women-caregiver dyads) are eligible for the study. Participants, who are affiliated with 2 partnering sites in Arizona (1 rural and 1 urban), complete pre- and postsurveys assessing knowledge, self-efficacy, and screening expectations before and immediately after completing the program. In addition, all participants complete brief satisfaction surveys after each of the 6 educational sessions. A subsample of Native American women with an IDD (n=12), caregivers (n=12), and community health educators (n=2) who participate in the MHMC program will provide semistructured qualitative input regarding the content, delivery, and cultural relevance of the program. RESULTS: The adaptation of the culturally responsive MHMC program was completed in August 2021. In November 2021, the project team began recruitment for feasibility and acceptability studies. Feasibility will be examined using participation metrics, and acceptability will be measured using satisfaction measures. Pre- and postmeasures in cancer screening knowledge, self-efficacy, and screening expectations will examine improvements among participants. CONCLUSIONS: The results of feasibility and acceptability testing of MHMC will guide future implementation studies of the program. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/37801.
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BACKGROUND: Tobacco use continues to be a leading preventable cause of death and disease in the United States, accounting for >480,000 deaths each year. Although treatments for tobacco use are effective for many, there is substantial variability in outcomes, and these approaches are not effective for all individuals seeking to quit smoking cigarettes. New, effective therapeutic approaches are needed to meet the preferences of people who want to stop smoking. Guided imagery (GI) is a mind-body technique that involves the guided visualization of specific mental images, which is enhanced with other sensory modalities and emotions. Preliminary evidence provides initial support for the use of GI as a treatment for cigarette smoking. Meta-analyses have shown that standard treatment for cigarette smoking delivered over the telephone via quitlines is effective. A telephone-based intervention that uses GI might provide another effective treatment option and increase the reach and effectiveness of quitlines. OBJECTIVE: This study aims to test the efficacy of Be Smoke Free, a telephone-delivered GI treatment for smoking cessation. METHODS: This multisite randomized clinical trial (RCT) will compare a novel telephone-delivered GI tobacco cessation treatment with a standard evidence-based behavioral treatment. The study will be conducted over 5 years. In phase 1, we refined protocols and procedures for the New York State and West Virginia sites for use in the RCT. During phase 2, we will conduct an RCT with 1200 participants: 600 (50%) recruited via quitlines and 600 (50%) recruited via population-based methods. Participants will be randomly assigned to either the GI condition or the behavioral condition; both treatments will be delivered by trained study coaches located at the University of Arizona. Assessments will be conducted at baseline and 3 and 6 months after enrollment by University of Arizona research staff. The primary outcome will be self-reported 30-day point prevalence abstinence 6 months after enrollment. Secondary outcomes include biochemically verified 7-day point prevalence abstinence 6 months after enrollment. RESULTS: Recruitment in West Virginia and New York began in October 2022. As of March 31, 2023, a total of 242 participants had been enrolled. Follow-up assessments began in November 2022. As of March 31, 2023, of the 118 eligible participants, 97 (82.2%) had completed the 3-month assessment, and 93% (26/28) of eligible participants had completed the 6-month assessment. Biochemical verification and qualitative interviews began in April 2023. Recruitment will continue through 2025 and follow-up assessments through 2026. Primary results are expected to be published in 2027. CONCLUSIONS: The Be Smoke Free study is a first-of-its-kind RCT that incorporates GI into telephone-based tobacco cessation treatment. If successful, Be Smoke Free will have substantial benefits for the long-term health of people who use tobacco across the United States. TRIAL REGISTRATION: ClinicalTrials.gov NCT05277831; https://clinicaltrials.gov/ct2/show/NCT05277831. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/48898.
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Living with intersectional identities, having a disability, and being a member of a racial or ethnic minoritized group in the U.S., contributes to marginalization that may result in health disparities and health inequities. The purpose of this scoping review is to describe health research regarding adult racial/ethnic minoritized individuals in the U.S with intellectual and developmental disabilities (I/DD). Eight electronic databases were searched to identify literature on the topic published since 2000. Of the 5,229 records, 35 articles were included in the review. Eligible studies included research conducted in the U.S., published in English, and research focused on adults with I/DD with race and/or ethnicity information. The 35 articles included racial/ethnic minoritized individuals who were Black, Latinx/Hispanic, American Indian, and Asian. Twenty-nine of the 35 articles identified health disparities experienced by adults with I/DD from racial/ethnic minoritized groups. Many health disparities were demonstrated in the articles, where adult racial/ethnic minoritized individuals with I/DD fared worse compared to White adults with I/DD. Additionally, four articles describe differences in health experiences by those from racial or ethnic minoritized backgrounds. Results of this scoping review highlight the need for research that incorporates intentional inclusion of racial/ethnic minoritized people with I/DD and include novel methodologies that allow for the contributions of historically marginalized voices. Future research with an intersectionality approach is recommended to promote equity.
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PURPOSE: To describe policy and system-level interventions with potential to improve cancer care at six sites. METHODS: In 2016, six institutions received foundation support to develop unique multi-component interventions aimed at improving cancer care for underserved populations. These organizations, located across the United States, participated in a cross-site evaluation to assess the overall initiative impact and to identify potentially promising policy and system-level solutions for dissemination and broader implementation. A health system and policy tracking tool was developed to collect data from each site and included a description of their efforts, strategies employed, and changes achieved (e.g., new policies, clinical protocols). Tracking tool data were analyzed using rapid qualitative analyses and a matrix approach. Semi-structured interviews were conducted with site leaders (N = 65) and were analyzed by thematic analysis. RESULTS: Sites reported 20 system and policy efforts, which resulted in improvements to electronic health records and telehealth strategies, changes to hospital/health system policies, and standardized clinical protocols/guidelines, among others. Efforts were aimed at: (1) coordinating care across multiple providers, supported by patient navigators; (2) expanding psychosocial and supportive care; (3) improving patient-provider communication; and (4) addressing barriers to accessing care. Interview analyses provided insights into successful strategies, challenges, and implications of the COVID-19 pandemic on cancer care. CONCLUSIONS AND IMPLICATIONS FOR CANCER SURVIVORS: Despite advances in diagnosis and treatment, cancer care remains inequitable. System-level improvements aimed at eliminating common barriers faced by underserved populations offer opportunities to improve the delivery of equitable, effective, and efficient care.
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Research from several fields has explored health literacy as a multidimensional construct. The authors' multimethod study, "The Impact of Cultural Differences on Health Literacy and Chronic Disease Outcomes," assessed health literacy and chronic disease self-management among 296 patients from four ethnic groups (Vietnamese, African American, White, Latino) at a Massachusetts community health center between 2006 and 2010. Health literacy was assessed using the short form of the Test of Functional Health Literacy in Adults (S-TOFHLA), the Rapid Estimate of Adult Literacy in Medicine (REALM), and the Short Assessment of Health Literacy for Spanish-speaking Adults (SAHLSA) measures. Qualitative research methods, including in-depth interviews (n = 34), home visits (n = 12), chronic disease diaries (n = 15), and focus groups (n = 47), were completed with a subset of participants. Qualitative interviews indicated a wide range of interpretations of S-TOFHLA questions in which participants substituted their own illness or health care experiences for the abstract examples offered in the instrument, at times leading to incorrect responses. Situating these responses in a broader social and cultural context, this article describes examples of the wide range of chronic disease self-management abilities among participants with limited education and/or low health literacy. It also discusses the culturally variable health beliefs identified among participants interviewed that may play important roles in their chronic disease self-management practices.
Subject(s)
Diabetes Mellitus/ethnology , Ethnicity/statistics & numerical data , Health Literacy/statistics & numerical data , Hypertension/ethnology , Self Care , Black or African American/statistics & numerical data , Asian/statistics & numerical data , Chronic Disease , Cultural Characteristics , Diabetes Mellitus/therapy , Female , Hispanic or Latino/statistics & numerical data , Humans , Hypertension/therapy , Male , Middle Aged , Prospective Studies , Qualitative Research , Vietnam/ethnology , White People/statistics & numerical dataABSTRACT
UNLABELLED: While a wide range of behavioral and psychosocial literature explores attitudes and beliefs towards cancer screenings, fewer studies examine attitudes across cancer screening types. We draw on quantitative and qualitative findings from a 4-year prospective study based at a community health center serving diverse, low-income patients. Methods included self-report surveys (n = 297), medical chart abstraction, and several qualitative methods with a subsample of participants. Participants included white, African-American, Vietnamese, and Latino patients who were diagnosed with diabetes, hypertension, or both. Patients' attitudes (both positive and negative) towards cancer screening types were remarkably consistent across cancer screening types. These effects were stronger among men than women. Never having had a cancer screening was generally associated with more unfavorable attitudes towards all screenings. Qualitative interviews indicate the importance of information circulated through social networks in shaping attitudes towards cancer screenings. CONDENSED ABSTRACT: In a multi-method study of attitudes towards cancer screening among medically underserved patients in a primary care setting, we found that attitudes (both positive and negative) were remarkably consistent across cancer screening types.
Subject(s)
Attitude to Health/ethnology , Health Behavior/ethnology , Health Services Accessibility , Mass Screening/psychology , Mass Screening/statistics & numerical data , Minority Groups/psychology , Neoplasms/diagnosis , Female , Humans , Male , Neoplasms/epidemiology , Neoplasms/ethnology , Qualitative Research , Social Perception , United States/epidemiologyABSTRACT
Like other minoritized groups, people with disabilities experience lack of access to health care. People with intellectual and developmental disabilities (IDD), which are lifelong disabilities diagnosed in childhood requiring varying levels of support for completing daily activities, are less likely to receive preventive health care such as cancer screening. Furthermore, Native American women are less likely than White women to receive cancer screenings. In this qualitative research with Native American women with IDD, their caregivers, healthcare and service providers, and community leaders, we asked, "What are the influences on breast and cervical cancer screening for Native American women with IDD?" with the goal of adapting an existing cancer screening education program. Semi-structured in-depth interviews (N = 48) were audio recorded and transcribed verbatim for analysis. Two coders used a constant comparative method to code and revise the a priori codebook with subthemes and new codes. Results highlighted individual, interpersonal, and community/institutional influences on screening, emphasizing the individual effects of social inequity on this population, the importance of ableist bias in recommending cancer screenings, and opportunities to integrate traditional ways of knowing with allopathic medicine. Results of this work were used to adapt a cancer screening education program for Native American women with IDD.
Subject(s)
Disabled Persons , Intellectual Disability , Uterine Cervical Neoplasms , Child , Developmental Disabilities/epidemiology , Early Detection of Cancer/methods , Female , Humans , Intellectual Disability/epidemiology , Uterine Cervical Neoplasms/diagnosis , Uterine Cervical Neoplasms/prevention & control , American Indian or Alaska NativeABSTRACT
Diverse advocacy groups have pushed for the recognition of cultural differences in health care as a means to redress inequalities in the U.S., elaborating a form of biocitizenship that draws on evidence of racial and ethnic health disparities to make claims on both the state and health care providers. These efforts led to federal regulations developed by the U.S. Office of Minority Health requiring health care organizations to provide Culturally and Linguistically Appropriate Services. Based on ethnographic research at workshops and conferences, in-depth interviews with cultural competence trainers, and an analysis of postings to a moderated listserv with 2,000 members, we explore cultural competence trainings as a new type of social technology in which health care providers and institutions are urged to engage in ethical self-fashioning to eliminate prejudice and embody the values of cultural relativism. Health care providers are called on to re-orient their practice (such as habits of gaze, touch, and decision-making) and to act on their own subjectivities to develop an orientation toward Others that is "culturally competent." We explore the diverse methods that cultural competence trainings use to foster a health care provider's ability to be self-reflexive, including face-to-face workshops and classes and self-guided on-line modules. We argue that the hybrid formation of culturally appropriate health care is becoming detached from its social justice origins as it becomes rationalized by and more firmly embedded in the operations of the health care marketplace.