Caregivers provide a critical source of care for people living with disabilities and chronic conditions. They improve health outcomes among care recipients while risking negative health consequences themselves. Nevertheless, the need for more caregivers is substantial. Therefore, caregiving is a public health concern. Public health seeks to improve the health of populations in an equitable way. This chapter illustrates a public health approach to supporting caregivers of people with dementia using the Healthy Brain Initiative: State and Local Public Health Partnerships to Address Dementia, the 2018–2023 Road Map. It is framed using essential public health services and identifies 25 strategies for public health action to support caregivers. The Road Map could serve as a template for supporting caregivers more broadly. Addressing the anticipated family care gap requires that public health systems collaborate to collect data and equitably implement evidence-based policies and programs that support people providing care in their communities.

BACKGROUND:Women spend most of their reproductive years avoiding pregnancy. However, we know little about contraceptive knowledge and use among women with disabilities, or about strategies to improve contraceptive knowledge and decision-making in this population. OBJECTIVE:To systematically review published literature on women with disabilities and: 1) contraceptive knowledge; 2) attitudes and preferences regarding contraception; 3) contraceptive use; 4) barriers and facilitators to informed contraceptive use; and 5) effectiveness of interventions to improve informed contraceptive decision-making and use. METHODS:We searched MEDLINE, PsychINFO, the Cochrane Library, CINAHL, and ERIC databases from inception through December 2017. Two reviewers independently reviewed studies for eligibility, abstracted study data, and assessed risk of bias following PRISMA guidance. RESULTS:We reviewed 11,659 citations to identify 62 publications of 54 unique studies (total n of women with disabilities = 21,246). No standard definition of disability existed across studies. The majority of studies focused on women with intellectual disabilities (ID). Women with ID and those who were deaf or hard-of-hearing had lower knowledge of contraceptive methods than women without disabilities. Estimates of contraceptive use varied widely, with some evidence that women with disabilities may use a narrower range of methods. Five of six studies evaluating educational interventions to increase contraceptive knowledge or use reported post-intervention improvements. CONCLUSIONS:Women with disabilities may use a more narrow mix of contraceptive methods and are often less knowledgeable about contraceptives than women without disabilities. Interventions to improve knowledge show some promise. A lack of data exists on contraceptive preferences among women with disabilities.

Background: Women spend most of their reproductive years avoiding pregnancy. However, we know little about contraceptive knowledge and use among women with disabilities, or about strategies to improve contraceptive knowledge and decision-making in this population. Objective: To systematically review published literature on women with disabilities and: 1) contraceptive knowledge; 2) attitudes and preferences regarding contraception; 3) contraceptive use; 4) barriers and facilitators to informed contraceptive use; and 5) effectiveness of interventions to improve informed contraceptive decision-making and use. Methods: We searched MEDLINE, PsychINFO, the Cochrane Library, CINAHL, and ERIC databases from inception through December 2017. Two reviewers independently reviewed studies for eligibility, abstracted study data, and assessed risk of bias following PRISMA guidance. Results: We reviewed 11,659 citations to identify 62 publications of 54 unique studies (total n of women with disabilities = 21,246). No standard definition of disability existed across studies. The majority of studies focused on women with intellectual disabilities (ID). Women with ID and those who were deaf or hard-of-hearing had lower knowledge of contraceptive methods than women without disabilities. Estimates of contraceptive use varied widely, with some evidence that women with disabilities may use a narrower range of methods. Five of six studies evaluating educational interventions to increase contraceptive knowledge or use reported post-intervention improvements. Conclusions: Women with disabilities may use a more narrow mix of contraceptive methods and are often less knowledgeable about contraceptives than women without disabilities. Interventions to improve knowledge show some promise. A lack of data exists on contraceptive preferences among women with disabilities. (C) 2018 Elsevier Inc. All rights reserved.

Background: Suicide is the second leading cause of death among U.S. youth. Prior research has found that disability and sexual orientation are each independently associated with suicide risk. However, most analyses regarding sexual orientation or disability in relation to teenagers' health have isolated the effects of these identities via multiple regression models. That approach assumes there is no multiplicative or synergistic effect between the two identities. Objective: To examine the association between suicidal ideation and the intersection of disability and sexual orientation. Methods: Cross-sectional data from the 2015 Oregon Healthy Teens Survey were analyzed using Poisson regression analysis with robust variance to estimate the relationship between the intersection of disability and sexual orientation and youth reports of suicidal ideation. We calculated three measures of interaction: 1) the excess risk due to interaction (RERI); 2) the proportion attributable to interaction (AP); and 3) the synergy index (SI). Results: Sexual minority teenagers with disabilities had higher risk of suicidal ideation (adjusted relative risk [ARR] = 2.82, 95% CI: 2.47-3.21) with respect to heterosexual teenagers without disabilities. The risk was also elevated, to a lesser degree, for heterosexual youth with disabilities (ARR = 1.97, 95% CI: 1.78 -2.19) and LGB youth without disabilities (ARR = 2.17, 95% CI: 1.95-2.42) with respect to the reference group. Our measures of interaction were indicative of a synergistic effect between disability and sexual orientation. Conclusions: Our findings suggest the combination of disability and minority sexual orientation may be associated with compounded negative experiences that could exacerbate the risk of suicide. (c) 2019 Elsevier Inc. All rights reserved.

PURPOSE:To assess whether financial or health-related barriers were more common among rural caregivers and whether rural caregivers experienced more caregiving-related difficulties than their urban peers. METHODS:We used data from 7,436 respondents to the Caregiver Module in 10 states from the 2011-2013 Behavioral Risk Factor Surveillance System. Respondents were classified as caregivers if they reported providing care to a family member or friend because of a long-term illness or disability. We classified respondents as living in a rural area if they lived outside of a Metropolitan Statistical Area (MSA). We defined a financial barrier as having an annual household income <$25,000 or not being able see a doctor when needed in the past year because of cost. We defined a health barrier as having multiple chronic health conditions, a disability, or fair or poor self-rated health. FINDINGS:Rural caregivers more frequently had financial barriers than urban caregivers (38.1% vs 31.0%, P = .0001), but the prevalence of health barriers was similar (43.3% vs 40.6%, P = .18). After adjusting for demographic differences, financial barriers remained more common among rural caregivers. Rural caregivers were less likely than their urban peers to report that caregiving created any difficulty in both unadjusted and adjusted models (adjusted prevalence ratio = 0.90; P < .001). CONCLUSIONS:Informal caregivers, particularly in rural areas, face financial barriers. Rural caregivers were less likely than urban caregivers to report caregiving-related difficulties. Rural caregivers' coping strategies or skills in identifying informal supports may explain this difference, but additional research is needed to explore this hypothesis.

This study aimed to (1) identify the prevalence and severity of pain and psychiatric comorbidities among personnel who had been deployed during Operation Iraqi Freedom (OIF), Operation Enduring Freedom (OEF), and Operation New Dawn (OND) and (2) assess whether the Department of Veterans Affairs (VA) Polytrauma System of Care and an OIF/OEF/OND registry reflect real differences among patients. Participants (N = 359) were recruited from two VA hospitals. They completed a clinical interview, structured diagnostic interview, and self-report measures. Results indicated pain was the most common complaint, with 87 percent experiencing pain during the prior week and 56 percent reporting moderate or severe pain. Eighty percent of participants met criteria for at least one of seven assessed comorbid problems (moderate or severe pain, postconcussional disorder, posttraumatic stress disorder [PTSD], anxiety disorder, mood disorder, substance use disorder, psychosis), and 59 percent met criteria for two or more problems. PTSD and postconcussional disorder rarely occurred in the absence of pain or other comorbidities (0.3% and 0%, respectively). The Polytrauma group had more comorbid psychiatric conditions (χ(2) = 48.67, p < 0.05) and reported greater severity of symptoms (p < 0.05) than the Registry group. This study confirmed the high prevalence of pain and concurrent mental health problems among personnel returning from military deployment.

Objectives: Optimal depression screening necessitates measurement tools that are valid across varied populations and in the presence of comorbidities. Methods: This study assessed the test properties of two versions of the Center for Epidemiologic Studies Depression scale against psychiatric diagnoses established by the Mini International Neuropsychiatric Interview among a clinical sample of US Veterans deployed during Operations Enduring Freedom, Iraqi Freedom, and New Dawn. Participants (N = 359) recruited from two Department of Veterans Affairs hospitals completed a clinical interview, structured diagnostic interview, and self-reported measures. Results: Based on diagnostic interview and the Diagnostic and Statistical Manual of Mental Disorders 4th Edition criteria, 29.5% of the sample met diagnostic criteria for major depressive disorder and 26.5% met diagnostic criteria for post-traumatic stress disorder. Both Center for Epidemiologic Studies Depression-20 and Center for Epidemiologic Studies Depression-10 scales performed well and almost identically against the Mini International Neuropsychiatric Interview-major depressive disorder in identifying Veterans with major depressive disorder (Center for Epidemiologic Studies Depression-20 area under the Receiver Operating Characteristic curve 91%; Center for Epidemiologic Studies Depression-10 area under the ROC curve 90%). Overall, higher cut points for the Center for Epidemiologic Studies Depression scales performed better in correctly identifying true positives and true negatives for major depressive disorder (Center for Epidemiologic Studies Depression-20 cut point 18+ sensitivity 92% specificity 72%; Center for Epidemiologic Studies Depression-10 cut point 10+ sensitivity 92% specificity 69%). Conclusions: The specificity of the Center for Epidemiologic Studies Depression scales was poor among Veterans with co-occurring post-traumatic stress disorder (13% and 16%). Veterans with post-traumatic stress disorder who have a positive depression screen should have a more thorough assessment of mental health symptoms and comorbidities, rather than immediate diagnosis of and treatment for depression.

Background: Exposure to interpersonal violence, namely verbal and physical abuse, is a highly prevalent threat to women's health and well-being. Among older, post-menopausal women, several researchers have characterized a possible bi-directional relationship of abuse exposure and diminished physical functioning. However, studies that prospectively examine the relationship between interpersonal abuse exposure and physical functioning across multiple years of observation are lacking. To address this literature gap, we prospectively evaluate the association between abuse exposure and physical functioning in a large, national cohort of post-menopausal women across 12 years of follow-up observation.Methods: Multivariable logistic regression was used to measure the adjusted association between experiencing abuse and physical function score at baseline in 154,902 Women's Health Initiative (WHI) participants. Multilevel modeling, where the trajectories of decline in physical function were modeled as a function of time-varying abuse exposure, was used to evaluate the contribution of abuse to trajectories of physical function scores over time.Result: Abuse was prevalent among WHI participants, with 11 % of our study population reporting baseline exposure. Verbal abuse was the most commonly reported abuse type (10 %), followed by combined physical and verbal abuse (1 %), followed by physical abuse in the absence of verbal abuse (0.2 %). Abuse exposure (all types) was associated with diminished physical functioning, with women exposed to combined physical and verbal abuse presenting baseline physical functioning scores consistent with non-abused women 20 years senior. Results did not reveal a differential rate of decline over time in physical functioning based on abuse exposure.Conclusions: Taken together, our findings suggest a need for increased awareness of the prevalence of abuse exposure among postmenopausal women; they also underscore the importance of clinician's vigilance in their efforts toward the prevention, early detection and effective intervention with abuse exposure, including verbal abuse exposure, in post-menopausal women. Given our findings related to abuse exposure and women's diminished physical functioning at WHI baseline, our work illuminates a need for further study, particularly the investigation of this association in younger, pre-menopausal women so that the temporal ordering if this relationship may be better understood.

Background: Research has demonstrated a clear association between cognitive decline and non-cognitive disability; however, all of these studies focus on disability as a correlate or result of some level of cognitive impairment or dysfunction. The relationship between disability and cognition is likely a complex one, that is currently incompletely described in the literature.Objectives: Our objective was to estimate the prevalence of long-term, non-cognitive disability using a population-representative sample of adults aged 18 and older, and then estimate the association between long-term, non-cognitive disability and self-reported worsening memory.Methods: Using the 2009 Florida Behavioral Risk Factor Surveillance System (BRFSS), we measured the relationship between non-cognitive disability and worsening memory using multivariable logistic regression analysis weighted to account for the complex sampling design of the BRFSS. We also estimated the adjusted odds of worsening memory by disability severity, classified according to the types of assistance needed.Results: Approximately 18% (95% confidence interval = (16%, 19%)) of Floridians were living with a long-term, non-cognitive disability in 2009. Among adults with no disability during or prior to the last year, only 5% reported worsening memory. The proportion of Floridians reporting worsening memory increases with increasing severity of disability-related limitations. In a multivariable logistic regression model, odds of worsening memory increased significantly with severity of disability-related limitations.Conclusions: These results highlight the association between non-cognitive disability and subsequent increased odds of worsening memory, independent of several other known risk factors, and a dose-response association with disability-related limitations. (c) 2016 Elsevier Inc. All rights reserved.

Introduction Increasing numbers of US residents rely on informal caregiving from friends and family members. Caregiving can have substantial health and financial impacts on caregivers. This study addressed whether those impacts include adverse nutritional states. Specifically, we examined household food insecurity, individual hunger, and obesity among caregivers compared with noncaregivers. Methods We analyzed 2012 Behavioral Risk Factor Surveillance System data from Oregon. The Caregiving Module was administered to a random subset of 2,872 respondents. Module respondents included 2,278 noncaregivers and 594 caregivers providing care or assistance to a friend or family member with a health problem or disability. We used multivariable logistic regression to assess associations between caregiving status and each of our dependent variables. Results Caregivers had significantly greater odds of reporting household food insecurity (odds ratio [OR] = 2.10, P = .003) and personal hunger (OR = 2.89, P = .002), even after controlling for income and other correlates of food insecurity. There were no significant differences in obesity between caregivers and noncaregivers. Conclusion Caregiving is associated with increased risk of food insecurity and hunger in Oregon, suggesting that careful attention to the nutritional profile of households with family caregivers is needed in this population.

Abstract Purpose: The authors describe preliminary work toward the creation of patient-centered outcome (PCO) measures to evaluate brain–computer interface (BCI) as an assistive technology (AT) for individuals with severe speech and physical impairments (SSPI). Method: In Phase 1, 591 items from 15 existing measures were mapped to the International Classification of Functioning, Disability and Health (ICF). In Phase 2, qualitative interviews were conducted with eight people with SSPI and seven caregivers. Resulting text data were coded in an iterative analysis. Results: Most items (79%) were mapped to the ICF environmental domain; over half (53%) were mapped to more than one domain. The ICF framework was well suited for mapping items related to body functions and structures, but less so for items in other areas, including personal factors. Two constructs emerged from qualitative data: quality of life (QOL) and AT. Component domains and themes were identified for each. Conclusions: Preliminary constructs, domains and themes were generated for future PCO measures relevant to BCI. Existing instruments are sufficient for initial items but do not adequately match the values of people with SSPI and their caregivers. Field methods for interviewing people with SSPI were successful, and support the inclusion of these individuals in PCO research. Implications for Rehabilitation Adapted interview methods allow people with severe speech and physical impairments to participate in patient-centered outcomes research. Patient-centered outcome measures are needed to evaluate the clinical implementation of brain–computer interface as an assistive technology.

Background: A primary means of social connection is visiting friends and families in their homes. Visitability is designing houses in a way that enables people to visit others' homes regardless of physical limitations or use of mobility assistive devices.Objective: The goals of this study were to develop a set of questions about visitability that could be used for surveillance and to assess the prevalence and correlates of visitability features in Florida.Methods: We added five questions to the 2011 Florida Behavioral Risk Factor Surveillance System (n = 12,399 respondents) and used complementary logelog regression models to estimate the prevalence ratio of each visitability feature.Results: The prevalence of visitability features in Florida homes was high for respondents with and without disabilities, though there was variation by visitability feature. A level entrance to the home and wide doorways were present in most respondents' homes (84.9% and 86.2%, respectively), while a main floor bathroom (59.6%) and a zero-step entrance (45.4%) were reported less commonly. People with a disability were less likely to report that their own home had doorways wide enough to accommodate a wheelchair compared to people without a disability (PR = 0.87, 95% CI: 0.80-0.95). Visitability features were less common in households with lower income and also in trailers or mobile homes than in detached single-family homes.Conclusions: The survey questions used in this study could be implemented in other states to measure and track visitability and monitor progress toward the Healthy People 2020 goal. Building or retro-fitting homes to include visitability features could increase the participation and inclusion of people with disabilities in community life. Published by Elsevier Inc.

OBJECTIVE To examine differences in access to health care and receipt of clinical preventive services by type of disability among working-age adults with disabilities. DATA SOURCE Secondary analysis of Medical Expenditure Panel Survey (MEPS) data from 2002 to 2008. STUDY DESIGN We conducted cross-sectional logistic regression analyses comparing people with different types of disabilities on health insurance status and type; presence of a usual source of health care; delayed or forgone care; and receipt of dental checkups and cancer screening. DATA COLLECTION We pooled annualized MEPS data files across years. Our analytic sample consisted of adults (18-64 years) with physical, sensory, or cognitive disabilities and nonmissing data for all variables of interest. PRINCIPAL FINDINGS Individuals with hearing impairment had better health care access and receipt than people with other disability types. People with multiple types of limitations were especially likely to have health care access problems and unmet health care needs. CONCLUSIONS There are differences in health care access and receipt of preventive care depending on what type of disability people have. More in-depth research is needed to identify specific causes of these disparities and assess interventions to address health care barriers for particular disability groups.

Background: Prior research has noted disparities between women with and without disabilities in receipt of timely screening for breast and cervical cancer. Some studies suggest greater disparities for women with more severe disabilities, but the research to date has yielded inconsistent findings. Our purpose was to further examine differences in receipt of breast and cervical cancer screening in relation to severity of disability.Methods: We analyzed Medical Expenditure Panel Survey annual data files from 2002 to 2008. Logistic regression analyses examined whether Pap smears and mammograms had been received within the recommended timeframe according to U. S. Preventive Services Task Force Guidelines. We compared four groups of women aged 18 to 64 years, categorized by presence and complexity of disability: 1) No limitations, 2) basic action difficulties only, 3) complex activity limitations only, and 4) both basic and complex activity limitations.Findings: Women both with and without disabilities fell short of Healthy People 2020 goals for breast and cervical cancer screening. Overall, women with disabilities were less likely to be up to date with both mammograms and Pap tests. The magnitude of disparities was greater for women with complex limitations. Disparities in Pap testing, but not mammography, remained significant when controlling for demographic, geographic, and socioeconomic factors.Conclusions: Women with more complex or severe disability were less likely to be up to date with breast and cervical cancer screenings. Targeted efforts are needed to reduce barriers to breast and cervical cancer screening for women with significant disabilities, especially those who also experience other socioecological disadvantages. Copyright (C) 2014 by the Jacobs Institute of Women's Health. Published by Elsevier Inc.

ObjectiveThe aim of this study was to determine the conceptual framework, item pool, and psychometric properties of a new function-neutral measure of health-related quality-of-life (HRQOL). DesignThis is an expert panel review of existing measures of HRQOL and development of a conceptual model, core constructs, and item pool and a validation by experts in specific disabilities and in cultural competence. Items were cognitively tested, pilot tested for functional bias, field tested with a national sample of adults with various limitations, and reliability tested via repeat administration. Final item selection was based on analyses of factor structure, demographic bias, variance in likelihood of endorsement, and item-total correlation. Psychometric properties were demonstrated through differential item functioning analyses, factor analyses, correlations, and item response theory analyses. ResultsThe results supported a four-domain conceptual model of HRQOL (physical health, mental health, social health, and life satisfaction and beliefs) for a 42-item HRQOL measure with an ancillary 15-item environment scale. The measure has strong internal consistency (&agr; = 0.88–0.97), known-groups validity, and test-retest reliability (r = 0.83–0.91). Tests of convergent and divergent validity confirmed the ability of the Function-Neutral Health-Related Quality of Life to measure health while being relatively free of content assessing function. ConclusionsA conceptually grounded four-domain, function-neutral measure of HRQOL that is appropriate for use with persons with and without various functional limitations was developed.

Background: Colorectal cancer is the third leading cause of cancer deaths in the United States. Early detection can reduce mortality; however, only 59% of U.S. adults age 50 and over meet recommended colorectal cancer screening guidelines. Studies in the general population have observed that rural residents are less likely to have received colorectal cancer screening than residents of urban areas.Objective: To determine whether urban/rural disparities in colorectal cancer screening exist among people with disabilities, similar to the disparities found in the general population.Methods: We analyzed Medical Expenditure Panel Survey annual data files from 2002 to 2008. We conducted logistic regression analyses to examine the relationship between urban/rural residence and ever having received screening for colorectal cancer (via colonoscopy, sigmoidoscopy, or fecal occult blood test).Results: Among U.S. adults ages 50-64 with disabilities, those living in rural areas were significantly less likely to have ever received any type of screening for colorectal cancer. The urban/rural difference was statistically significant regardless of whether or not we controlled for demographic, socioeconomic, health, and health care access variables.Conclusions: Disparity in screening for colorectal cancer places rural residents with disabilities at greater risk for late stage diagnosis and mortality relative to people with disabilities in urban areas. Thus, there is a need for strategies to improve screening among people with disabilities in rural areas. (C) 2014 Elsevier Inc. All rights reserved.

Background: Having a usual source of health care is positively associated with regular health maintenance visits and receipt of preventive services. People with disabilities are, overall, more likely than those without disabilities to have a usual source of care (USC). However, the population of people with disabilities is quite heterogenous, and some segments of the population may have less access to a USC than others.Objective: To determine whether there are significant subgroup differences in having a USC within the U.S. population of working-age adults with disabilities, and to compare adults with and without disabilities while controlling for other subgroup differences.Methods: We analyzed Medical Expenditure Panel Survey annual data files from 2002 to 2008. We performed both bivariate and multivariate logistic regression analyses to examine the relationship of sociodemographic and disability subgroup variables with having a USC.Results: Within the disability population, individuals who were younger; male; Black, Hispanic, or other (non-White) race; less educated; of lower income; or uninsured for part or all of the year were significantly less likely to have a USC. These differences mirrored those among adults without disabilities. When controlling for these differences, people with physical, hearing, or multiple disabilities had greater odds of having a USC than people without disabilities, but those with vision or cognitive limitations did not differ significantly from the non-disabled referent group.Conclusions: Disparities among people with and without disabilities are similar, underscoring the need for attention to disparities within the disability population. (C) 2015 Elsevier Inc. All rights reserved.

Objective. Cross-sectional associations between childhood school segregation and adult sense of control and physical performance have been established in the African American Health (AAH) cohort. Here we extend that work by estimating the association between childhood school segregation and 2-year changes in adult sense of control.Method. Complete data on 541 older AAH men and women were used to estimate the association between childhood school segregation and changes in the sense of control. Exposure to segregation was self-reported in 2004, and the sense of control was measured in 2008 and 2010 using Blom rank transformations of Mirowsky and Ross' 8-item scale. Declining subjective income and experiencing major life stressors between 2008 and 2010, as well as traditional covariates (demographic factors, socioeconomic status, self-rated health, racial attitudes and beliefs, and religiosity) were included for statistical adjustment. Multiple linear regression analysis with propensity score reweighting was used.Results. Receiving the majority of one's primary and secondary education in segregated schools had a significant net positive association (d = 0.179; p = .029) with 2-year changes in adult sense of control.Conclusion. AAH participants receiving the majority of their primary and secondary educations in segregated schools appeared to have been protected, in part, from age-related declines in the sense of control.