Primary Care Providers' Experiences Recommending and Performing Cervical Cancer Screening for Women with Intellectual Disabilities: A Qualitative Study.

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.

Diverse rural caregivers for individuals with Alzheimer's disease or related dementias: analysis of health factors at the individual, interpersonal, and community level.

Objectives: Approximately 6.2 million Americans aged 65 or older have Alzheimer's disease or related dementias (ADRD). Unpaid family members and friends provide the bulk of caregiving for these individuals. Caregiving in rural areas adds unique challenges, particularly for ethnically/racially diverse caregivers. This study provides a profile of diverse, rural ADRD caregivers with an emphasis on multi-level factors that influence physical and mental health.Methods: A cross-sectional survey was conducted with 156 diverse rural ADRD caregivers.Results: 65% of participants identified as White/Non-Hispanic (WNH; n = 101) and 35% identified as ethnically/racially diverse (ERD; n = 55). The majority of participants reported economic deprivation. More ERD caregivers were uninsured and had at least one chronic health condition. Higher proportions of ERD caregivers smoked cigarettes, consumed alcohol regularly, and had not seen or talked to a doctor in the previous year. There were no ethnic/racial group differences in stress, anxiety, depressive symptoms, subjective health, or sleep quality.Conclusion: Rural caregivers, regardless of ethnicity/race, may benefit from extra supports in order to maintain optimal health. Further research is needed to disentangle the complex relationship between culture, caregiving, and health.

Barriers and facilitators to attending and being physically active during recreation time among women incarcerated.

BACKGROUND: Most women incarcerated in jail are not physically active and do not attend recreation time (rec-time), a time dedicated to being physically active, outside. The purpose of this study was to determine barriers and facilitators to attending and being physically active during rec-time among women incarcerated in jail. METHODS: We recruited and distributed a cross-sectional questionnaire to 100 women incarcerated at the Coconino County Detention Facility (CCDF) in Flagstaff, Arizona from March to July 2020. Women were asked about their experience with rec-time at CCDF, including if they had ever attended, how often they attended, if they exercised at rec-time, activities they participated in, and facilitators, barriers, and benefits to attend rec-time. RESULTS: Among 99 women who completed the questionnaire, 89% had ever attended rec-time. Most women identified environmental- and health-related facilitators to attending rec-time including enjoying natural light (74%), getting fresh air (83%), a change in environment (62%), and to move around and exercise (72%). Many women indicated environmental-, equipment-, clothing, and motivation-related barriers to attending rec-time. Specifically, women believed there was a lack of equipment (56%) and limited access to proper footwear (49%). CONCLUSIONS: As health and environment are important facilitators and barriers to being physically active among women incarcerated in jail, it is important to identify appropriate environmental and policy interventions to increase the use of rec-time and physical activity. If a correctional facility does not offer rec-time or a similar alternative, one should be established, accessible, and welcoming.

A multisectoral approach to advance health equity in rural northern Arizona: county-level leaders' perspectives on health equity.

BACKGROUND: Multisectoral and public-private partnerships are critical in building the necessary infrastructure, policy, and political will to ameliorate health inequity. A focus on health equity by researchers, practitioners, and decision-makers prioritizes action to address the systematic, avoidable, and unjust differences in health status across population groups sustained over time and generations that are beyond the control of individuals. Health equity requires a collective process in shaping the health and wellbeing of the communities in which we live, learn, work, play, and grow. This paper explores multisectoral leaders' understanding of the social, environmental, and economic conditions that produce and sustain health inequity in northern Arizona, a geographically expansive, largely rural, and culturally diverse region. METHODS: Data are drawn from the Southwest Health Equity Research Collaborative's Regional Health Equity Survey (RHES). The RHES is a community-engaged, cross-sectional online survey comprised of 31 close-ended and 17 open-ended questions. Created to assess cross-sectoral regional and collective capacity to address health inequity and inform multisectoral action for improving community health, the RHES targeted leaders representing five rural northern Arizona counties and 13 sectors. Select open-ended questions were analyzed using an a priori coding scheme and emergent coding with thematic analysis. RESULTS: Although leaders were provided the definition and asked to describe the root causes of inequities, the majority of leaders described social determinants of health (SDoH). When leaders described root causes of health inequity, they articulated systemic factors affecting their communities, describing discrimination and unequal allocation of power and resources. Most leaders described the SDoH by discussing compounding factors of poverty, transportation, housing, and rurality among others, that together exacerbate inequity. Leaders also identified specific strategies to address SDoH and advance health equity in their communities, ranging from providing direct services to activating partnerships across organizations and sectors in advocacy for policy change. CONCLUSION: Our findings indicate that community leaders in the northern Arizona region acknowledge the importance of multisectoral collaborations in improving health equity for the populations that they serve. However, a common understanding of health equity remains to be widely established, which is essential for conducting effective multisectoral work to advance health equity.

Barriers in access to healthcare for women with disabilities: a systematic review in qualitative studies.

BACKGROUND: Studies show that different socio-economic and structural factors can limit access to healthcare for women with disabilities. The aim of the current study was to review barriers in access to healthcare services for women with disabilities (WWD) internationally. METHODS: We conducted a systematic review of relevant qualitative articles in PubMed, Web of Science and Scopus databases from January 2009 to December 2017. The search strategy was based on two main topics: (1) access to healthcare; and (2) disability. In this review, women (older than 18) with different kinds of disabilities (physical, sensory and intellectual disabilities) were included. Studies were excluded if they were not peer-reviewed, and had a focus on men with disabilities. RESULTS: Twenty four articles met the inclusion criteria for the final review. In each study, participants noted various barriers to accessing healthcare. Findings revealed that WWD faced different sociocultural (erroneous assumptions, negative attitudes, being ignored, being judged, violence, abuse, insult, impoliteness, and low health literacy), financial (poverty, unemployment, high transportation costs) and structural (lack of insurance coverage, inaccessible equipment and transportation facilities, lack of knowledge, lack of information, lack of transparency, and communicative problems) factors which impacted their access healthcare. CONCLUSIONS: Healthcare systems need to train the healthcare workforce to respect WWD, pay attention to their preferences and choices, provide non-discriminatory and respectful treatment, and address stigmatizing attitudinal towards WWD. In addition, families and communities need to participate in advocacy efforts to promote WWD's access to health care.

Development and Validation of a Community Assessment Survey for Diverse Rural Family Caregivers of People With Alzheimer Disease and Related Dementias.

Many individuals with Alzheimer disease and related dementias receive care from family members and friends. Rurality adds increased complexity to care, especially for diverse caregivers. This study details the development and content validation process for a community assessment survey for rural white, Latinx, and American Indian/Alaska Native Alzheimer disease and related dementias caregivers. Foundational survey items were based upon instruments validated with diverse rural caregivers. A modified Delphi process (2 rounds) was used to refine items. The process concluded when 75%+ of experts agreed that the survey was (1) inclusive of different cultural groups; (2) respectful of cultural values and norms; (3) comprehensive with respect to needs, assets, and resources, and (4) relevant to the experiences of diverse rural caregivers. Round 1 of the process (N = 9 panelists) resulted in the elimination of 2 survey sections, a greater focus on issues including transportation and roles of extended family members, and the inclusion of open-ended questions. Round 2 (N = 6 panelists) resulted in further improvements, particularly to the sections about cultural customs, beliefs, and traditions and interactions with health care and other providers. Benefits of the process included raising awareness about rural caregiving issues and maximizing data quality. Challenges included honoring the diversity of respondents' opinions and balancing research rigor with community utility. This community assessment survey may help researchers better understand the needs and culturally-based strengths of diverse rural family caregivers.

Exploring health and wellness among Native American adults with intellectual and/or developmental disabilities and their family caregivers.

BACKGROUND: Adults with intellectual and/or developmental disabilities (IDD) experience health inequities, and those who also identify as a member of an ethnic minority group face additional health inequities. In the United States, a majority of adults with IDD continue to be supported by family caregivers making their health equity also important. The purpose of this study was to explore how Native American adults with IDD and their family caregivers experience health and wellness. METHOD: This community-engaged research was guided by a Community Advisory Board (CAB) with study participants completing a Photovoice project. RESULTS: Participants identified individual, family and community level influences on health and wellness including the importance of participation in meaningful activities and connection to culture. CONCLUSIONS: In order to address health inequities, more research is needed to understand health and wellness from the unique perspectives of individuals with IDD and those from racial and ethnic minority groups.

The predictors of access to health services for people with disabilities: A cross sectional study in Iranian context.

Background: In developing countries, people with disabilities (PWD) are more likely to have unequitable access to health care services than their counterparts without disabilities. Access to health care is a multidimensional concept and PWD experience various barriers to use health care. This quantitative study explored the predictors and determents of access to health care for PWD in an Iranian context. Methods: Data were collected from a cross sectional study conducted in Tehran in 2017. A total of 403 adults with physical and/or intellectual disabilities were selected using census method. The data on PWD were collected from 14 rehabilitation centers affiliated to Welfare Organization and Red Crescent Organization. The self-report World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) was used to collect data on disability status. T test, ANOVA, and multiple linear regressions were used to determine factors influencing access to health care for PWD. Significance level was set at 5%. Also, SPSS software version 20.0 was used for data analysis. Results: The mean of access to health care among people with intellectual disabilities (mean: 61.77, 95% confidence interval (CI):59.20, 64.35) was significantly lower than their counterparts with physical disabilities (Mean: 67.97, 95% CI: 65.26, 70.69). The results of multiple linear regression analysis showed that in the affordability dimension, type of disability, marital status, and supplemental health insurance could predict access to health services for PWD. In availability dimension, only location predicted the outcome variable significantly. Also, location and type of disability were considered to be potential predictors of access to health services in acceptability dimension. Conclusion: The results indicate that various factors can limit access to health services for PWD. To achieve universal health coverage, vulnerable groups and their needs should be identified to increase equitable access to health care services. Also, the health care system should pay more attention to demographic differences when planning and providing affordable and acceptable health care for PWD. Finally, the role of the government as the heath stewardship is vital to promote health care access for PWD in Iran.

Recommendations for Modernizing a Culturally Grounded Substance Use Prevention Program for American Indian and Alaska Native Youth.

American Indian and Alaska Native (AI/AN) youth use alcohol and drugs at a higher rate with earlier onset than the overall youth population in the United States. Youth interventions are needed to support the prevention and reduction of substance misuse-related issues. Connecting AI/AN children to their heritage through culturally grounded prevention programs has been shown to be more effective than programs designed for the general population. The objective of this formative evaluation was to provide community-informed updates for an existing culturally grounded substance use prevention program, The Beauty Way. This study was conducted in partnership with an AI/AN-serving community organization using key informant interviews and talking circles with community members and parents. Participants revealed the challenges and obstacles AI/AN youth face, the impact of cultural values, and activities which engage youth to prevent problematic substance use. Recommendations include the importance of 1) incorporating current challenges to behavioral health such as social media and vaping, 2) including cultural values and activities including land-based learning, and 3) creating a robust facilitator guide and hiring culturally sensitive program staff. These results generated recommendations to strengthen the cultural focus and application of The Beauty Way for AI/AN youth.

An Adapted Cancer Screening Education Program for Native American Women With Intellectual and Developmental Disabilities and Their Caregivers: Protocol for Feasibility and Acceptability Testing.

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.

Engaging Youth and Young Adults in the COVID-19 Pandemic Response via the "It's Our Turn" Crowdsourcing Contest.

As the coronavirus disease (COVID-19) pandemic continued to progress into 2021, appeals were made to take a stronger focus on the perceptions and practices of youth and young adults (YYAs) regarding COVID-19 mitigation, as well as the impact of mitigation strategies on the overall wellbeing of YYAs. In this paper, we describe our efforts to increase YYA engagement in Arizona's COVID-19 response by pairing embedded values from youth participatory action research (YPAR) with a crowdsourcing challenge contest design. The research protocol and implementation are described, followed by a thematic analysis of YYA-led messaging portrayed in 23 contest submissions and reflections formed by 223 community voters after viewing contest submissions. The authors conclude that a YYA-led crowdsourcing contest presented an opportunity to (a.) investigate the perceptions and behaviors of YYAs and their networks regarding the COVID-19 pandemic and mitigation efforts and (b.) amplify the voices of YYAs in the pandemic response. Perhaps even more importantly, this approach also offered insight into the exacerbated impact of the pandemic on YYA mental health and wellbeing, and the utility of YPAR in raising awareness of these effects among the contexts and social networks of YYAs.

A Scoping Review of Health Research with Racially/Ethnically Minoritized Adults with Intellectual and Developmental Disabilities.

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.

Community Engagement Alliance (CEAL) Against COVID-19 Disparities: Academic-community partnership to support workforce capacity building among Arizona community health workers.

The COVID-19 pandemic has both highlighted and worsened existing health inequities among communities of color and structurally vulnerable populations. Community Health Workers, inclusive of Community Health Representatives (CHW/Rs) have entered the spotlight as essential to COVID-19 prevention and control. To learn about community experiences and perspectives related to COVID-19 and inform CHW/R workforce capacity building efforts, a series of focus groups were conducted with CHW/Rs throughout Arizona at two time points in 2021. Throughout the data collection and analysis process, researchers and community partners engaged in ongoing and open dialogue about what CHW/Rs on the ground were reporting as priority community concerns, needs, and challenges. Thus, CHW/Rs informed the development of culturally and linguistically relevant health education messages, materials, and training for CHW/Rs. In this community case study, we detail the efforts of partnership between a statewide CHW professional association and an academic research team that facilitated rapid decision-making and knowledge sharing to create community-grounded tools and resources supportive of CHW/R workforce capacity building in the context of the COVID-19 pandemic.

Evaluating the Impact of a Culturally Sensitive Art Program on the Resilience, Perceived Stress, and Mood of Urban American Indian Youth.

American Indian and Alaska Native (AI/AN) youth face a history of adversity and trauma that are linked to academic and health concerns. Culturally grounded art-based interventions hold promise to address challenges faced by AI youth. AI culture and wisdom can evoke a sense of capability in youth that strengthens their resilience. This study sought to evaluate a culturally oriented art therapy curriculum on its impact on resilience, stress, and mood for AI youth (n = 36). A paired-samples t-test was conducted to compare the perceived stress scores of the participants before and after a 12-week art intervention. There was a significant decrease in participant perceived stress between the pre (M = 16.7, SD = 4.7) and post conditions (M = 20.4, SD = 4.6); t (24) =, -3.5 p = 0.002). A paired-samples t-test was conducted to compare the mood of each participant before and after each instance of art activity to see if there was a self-reported change in mood. There was a significant improvement in participant mood in 10 out of 11 of the intervention weeks. Although no statistically significant change was found in participant resilience, participants in this study did report high levels of resilience. This study provides promising evidence that a culturally salient after-school art curriculum program can reduce stress and improve mood for urban AI youth.

Patterns of Physical Activity Among Women Incarcerated in Jail.

The physical and mental health benefits of physical activity in all populations are well established. In 2019, incarcerated women at a Southwest county jail were observed during "recreation time," a time when physical activity is encouraged, to identify the proportion of women who participated in recreation time and their physical activity levels. During observed recreation times, 28% of women attended; 56% were sedentary, 4% engaged in vigorous physical activity, and approximately 40% walked or performed similarly moderate physical activity. Future research should identify barriers to being physically active while incarcerated, leading to targeted interventions to promote physical activity.

Adapting a Cancer Screening Education Program for Native American Women with Disabilities.

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.

"We Live on an Island": Perspectives on Rural Family Caregivers for Adults with Alzheimer's Disease and Related Dementias in the United States.

As the United States' aging population grows, there will be increased prevalence of individuals living with Alzheimer's Disease and related dementias (ADRD), who largely rely on the support of their family caregivers. Family caregivers residing in rural areas face additional challenges with managing caregiving responsibilities and navigating support services. The purpose of this multilevel phenomenological qualitative study was to explore the assets, unique needs, and resources of rural-residing ADRD caregivers from the caregiver, provider, and policy influencers' perspectives. The study took place between 2019 through 2021 in northern Arizona, a largely rural and geographically vast area home to caregivers from diverse backgrounds. Twenty-seven caregivers to a loved one with ADRD participated in focus groups. Twelve health and social services providers and twelve policy influencers, those involved in leadership positions for aging programs or advocacy groups, completed individual interviews. Caregivers demonstrate many assets which contribute to their ability to manage and cope with their caregiving role. However, caregivers face a series of issues related to their caregiving role and need early and ongoing education regarding ADRD. There is a lack of resources available in rural areas, in particular providers, making it challenging to obtain needed resources necessary to support their loved one with ADRD. Furthermore, there is a need for more providers trained in working with aging adults and those experiencing ADRD, and a need for more culturally relevant resources.

Are Researchers Addressing Cancer Treatment and Survivorship Among People With Intellectual and Developmental Disabilities in the U.S.? A Scoping Review.

People with intellectual and developmental disabilities (PWIDD) often encounter barriers in the health care system when seeking general and specialized medical care. Literature has shown that PWIDD experience a lack of proper screening for and prevention of cancer compared to the general population. However, less is known regarding the cancer care and survivorship of PWIDD, especially in the United States. In this review, we examine what is currently known about the primary, psychosocial, and palliative care of PWIDD diagnosed with cancer. Our analyses reveal an immediate need for improvement in caregiver support, collaboration among health care providers, and ethical approaches to information disclosure for this population, as well as the establishment of more reliable standards of care through additional research with PWIDD.

Providing Equitable Access to Health Care for Individuals with Disabilities: An Important Challenge for Medical Education.

In a recent national survey, over 50% of physicians reported not feeling confident in their ability to provide care to individuals with disabilities. This finding is troubling as physicians are required by the Americans with Disabilities Act (1990) to ensure their practice is accessible to individuals with disabilities. This commentary addresses the need for including disability in medical education and to provide inclusive and quality care for individuals with disabilities. We offer four recommendations to enhance medical school curricula that would educate medical students to provide equitable health services to individuals with disabilities: 1) embed disability training throughout medical education; 2) educate medical students to recognize multiple models of disability; 3) include education and experience with universal design and supported decision-making; and 4) include individuals with all types of disabilities in medical education. Including disability education for medical students should better prepare future physicians for feeling confident in their ability to provide care to individuals with disabilities.

A Scoping Review of Barriers and Facilitators to Pap Testing in Women with Disabilities and Serious Mental Illnesses: Thirty Years After the Americans with Disabilities Act.

Background: Thirty years after the Americans with Disabilities Act (ADA) was passed, promising equal access to health services for people with disabilities and serious mental illness, research on Pap testing continues to uncover health disparities among women with disabilities and women with serious mental illnesses, including those that identify as an ethnic/racial minority. Aim: The purpose of this paper is to describe and present the literature on the barriers and facilitators women with disabilities and women with serious mental illnesses face with receiving a Pap test using the social ecological model. We also examined the degree to which racial/ethnic minority women were included in these articles. Method: A scoping review was conducted where the research team searched United States academic literature from 1990 through February 2020 in PubMed, Medline, and CINAHL using general subject headings for disability, mental illness, and Pap testing. Results: Thirty-two articles met inclusion criteria. More barriers than facilitators were mentioned in articles. Barriers and facilitators are organized into three groups according to social ecological model and include individual (e.g., socioeconomic status, anxiety, education), interpersonal (e.g., family, living environment), and organizational factors (health care provider training, health care system). Participant's race/ethnicity were often reported but minoritized populations were often not the focus of articles. Conclusions: More articles discussed the difficulties that women with disabilities and women with serious mental illnesses face with receiving a Pap test than facilitators to Pap testing. Additional research should focus on the intersectionality race/ethnicity and women with disabilities and women with serious mental illnesses in relation to Pap testing.