Comparing Unmet Service Needs Between Rural and Urban Family Caregivers of People Living with Alzheimer's Disease and Related Dementias: A Multi-Site Study.

BACKGROUND AND OBJECTIVES: The scarcity of resources and available caregiving services in rural areas in the United States has been well-documented. However, less research has compared unmet service needs between caregivers of people with Alzheimer's disease and related dementias (ADRD) in rural versus urban areas. RESEARCH DESIGN AND METHODS: Using semi-structured interviews guided by theories of health service use and dependent care, we interviewed 20 family caregivers residing in rural areas of Western North Carolina and 18 caregivers within the urban setting of Houston, Texas, and compared their unmet service needs and contextual factors that facilitate their service use. RESULTS: Thematic analyses revealed similar unmet service needs among rural and urban caregivers; however, the ways they approached and solved their challenges differed. Caregivers in rural areas wished for more information and caregiver support whereas urban caregivers looked for information they needed until they found the answers. Rural caregivers expressed guilt about using services because they felt they were limited and zero-sum whereas urban caregivers shared available resources so that other caregivers could use them as well. Unmet service needs for urban caregivers included more racially and ethnically specific services for people with ADRD in their ethnic-specific languages and foods while rural caregivers' cultural needs were not racially and ethnically specific but for more place-specific services. DISCUSSION AND IMPLICATIONS: Recommendations for rural caregivers included utilizing online and virtual opportunities and expanding their reach across the United States. For urban caregivers, increasing culturally tailored service options would likely increase access and use.

Preimplementation Evaluation of a Self-Directed Care Program in a Veterans Health Administration Regional Network: Protocol for a Mixed Methods Study.

BACKGROUND: The Veteran-Directed Care (VDC) program serves to assist veterans at risk of long-term institutional care to remain at home by providing funding to hire veteran-selected caregivers. VDC is operated through partnerships between Department of Veterans Affairs (VA) Medical Centers (VAMCs) and third-party Aging and Disability Network Agency providers. OBJECTIVE: We aim to identify facilitators, barriers, and adaptations in VDC implementation across 7 VAMCs in 1 region: Veterans Integrated Service Network (VISN) 8, which covers Florida, South Georgia, Puerto Rico, and the US Virgin Islands. We also attempted to understand leadership and stakeholder perspectives on VDC programs' reach and implementation and identify veterans served by VISN 8's VDC programs and describe their home- and community-based service use. Finally, we want to compare veterans served by VDC programs in VISN 8 to the veterans served in VDC programs across the VA. This information is intended to be used to identify strategies and propose recommendations to guide VDC program expansion in VISN 8. METHODS: The mixed methods study design encompasses electronically delivered surveys, semistructured interviews, and administrative data. It is guided by the Consolidated Framework for Implementation Research (CFIR version 2.0). Participants included the staff of VAMCs and partnering aging and disability network agencies across VISN 8, leadership at these VAMCs and VISN 8, veterans enrolled in VDC, and veterans who declined VDC enrollment and their caregivers. We interviewed selected VAMC site leaders in social work, Geriatrics and Extended Care, and the Caregiver Support Program. Each interviewee will be asked to complete a preinterview survey that includes information about their personal characteristics, experiences with the VDC program, and perceptions of program aspects according to the CFIR (version 2.0) framework. Participants will complete a semistructured interview that covers constructs relevant to the respondent and facilitators, barriers, and adaptations in VDC implementation at their site. RESULTS: We will calculate descriptive statistics including means, SDs, and percentages for survey responses. Facilitators, barriers, number of patients enrolled, and staffing will also be presented. Interviews will be analyzed using rapid qualitative techniques guided by CFIR domains and constructs. Findings from VISN 8 will be collated to identify strategies for VDC expansion. We will use administrative data to describe veterans served by the programs in VISN 8. CONCLUSIONS: The VA has prioritized VDC rollout nationwide and this study will inform these expansion efforts. The findings from this study will provide information about the experiences of the staff, leadership, veterans, and caregivers in the VDC program and identify program facilitators and barriers. These results may be used to improve program delivery, facilitate growth within VISN 8, and inform new program establishment at other sites nationwide as the VDC program expands. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/57341.

Dying with dementia in nursing homes: A population-based study of decedents and their families.

BACKGROUND: Families play a critical role in end-of-life (EOL) care for nursing home (NH) residents with dementia. Despite the important role of family, little is known about the availability and characteristics of families of persons with dementia who die in NHs. METHODS: This is a retrospective cohort study of 18,339 individuals 65 years and older with dementia who died in a Utah NH between 1998 and 2016, linked to their first-degree family (FDF) members (n = 52,566; spouses = 11.3%; children = 58.3%; siblings = 30.3%). Descriptive statistics, chi-square tests, and t-tests were used to describe the study cohort and their FDF members and to compare sociodemographic and death characteristics of NH decedents with (n = 14,398; 78.5%) and without FDF (n = 3941; 21.5%). RESULTS: Compared with NH decedents with FDF, NH decedents with dementia without FDF members were more likely to be older (mean age 86.5 vs 85.5), female (70.5% vs 59.3%), non-White/Hispanic (9.9% vs 3.2%), divorced/separated/widowed (84.4% vs 61.1%), less educated (<12th grade; 42.2% vs 33.7%), have Medicare and Medicaid (20.8% vs 12.5%), and die in a rural/frontier NH (25.0% vs 23.4%). NH decedents who did not have FDF were also more likely to die from cancer (4.2% vs 3.9%), chronic obstructive pulmonary disease (COPD; 3.9% vs 2.5%), and dementia (40.5% vs 38.4%) and were less likely to have 2+ inpatient hospitalizations at EOL (13.9% vs 16.2%), compared with NH decedents with FDF. CONCLUSIONS: Findings highlight differences in social determinants of health (e.g., sex, race, marital status, education, insurance, rurality) between NH decedents with dementia who do and do not have FDF-factors that may influence equity in EOL care. Understanding the role of family availability and familial characteristics on EOL care outcomes for NH residents with dementia is an important next step to informing NH dementia care interventions and health policies.

Use of Caregiving Support Services Among Diverse Dementia Caregivers by Geographic Context.

BACKGROUND AND OBJECTIVES: Little is known about how race/ethnicity and geographic context relate to support service use among dementia caregivers. Our objectives were to investigate (a) whether the use of at least one formal caregiving service-support groups, respite care, and training-differed by race/ethnicity and across metro and nonmetro areas; and (b) whether predisposing, enabling, and need characteristics influenced support service use by race/ethnicity. RESEARCH DESIGN AND METHODS: Data were analyzed from a sample of primary caregivers of care recipients aged 65 years or older with probable dementia (n = 482) in the 2017 National Health and Aging Trends Study and National Study of Caregiving. We calculated weighted prevalence estimates and then used the Hosmer-Lemeshow goodness of fit statistic to find the best-fitting logistic regression models. RESULTS: Among minority dementia caregivers, support service use was higher in metro than nonmetro areas (35% and 15%); the trend was reversed for non-Hispanic White caregivers (47% nonmetro and 29% metro). The best-fitting regression models included predisposing, enabling, and need factors for both minority and non-Hispanic White caregivers. Younger age and more disagreement within the family were consistently associated with more service use in both groups. Among minority caregivers, better caregiver and care recipient health were associated with using support services. Among non-Hispanic White caregivers, nonmetro geographic context and caregiving interfering with valued activities were associated with using support services. DISCUSSION AND IMPLICATIONS: Geographic context differently affected support service use and the influence of predisposing, enabling, and need factors varied by race/ethnicity.

Phenotyping Depression After Mild Traumatic Brain Injury: Evaluating the Impact of Multiple Injury, Gender, and Injury Context.

The chronic mental health consequences of mild traumatic brain injury (TBI) are a leading cause of disability. This is surprising given the expectation of significant recovery after mild TBI, which suggests that other injury-related factors may contribute to long-term adverse outcomes. The objective of this study was to determine how number of prior injuries, gender, and environment/context of injury may contribute to depressive symptoms after mild TBI among deployed United States service members and veterans (SMVs). Data from the Long-term Impact of Military-Relevant Brain Injury Consortium Prospective Longitudinal Study was used to assess TBI injury characteristics and depression scores previously measured on the Patient Health Questionnaire-9 (PHQ-9) among a sample of 1456 deployed SMVs. Clinical diagnosis of mild TBI was defined via a multi-step process centered on a structured face-to-face interview. Logistical and linear regressions stratified by gender and environment of injury were used to model depressive symptoms controlling for sociodemographic and combat deployment covariates. Relative to controls with no history of mild TBI (n = 280), the odds ratios (OR) for moderate/severe depression (PHQ-9 ≥ 10) were higher for SMVs with one mild TBI (n = 358) OR: 1.62 (95% confidence interval [CI] 1.09-2.40, p = 0.016) and two or more mild TBIs (n = 818) OR: 1.84 (95% CI 1.31-2.59, p < 0.001). Risk differences across groups were assessed in stratified linear models, which found that depression symptoms were elevated in those with a history of multiple mild TBIs compared with those who had a single mild TBI (p < 0.001). Combat deployment-related injuries were also associated with higher depression scores than injuries occurring in non-combat or civilian settings (p < 0.001). Increased rates of depression after mild TBI persisted in the absence of post-traumatic stress disorder. Both men and women SMVs separately exhibited significantly increased depressive symptom scores if they had had combat-related mild TBI. These results suggest that contextual information, gender, and prior injury history may influence long-term mental health outcomes among SMVs with mild TBI exposure.

Association between low health literacy and adverse health behaviors in North Carolina, 2016.

Introduction: Health literacy (HL) is an urgent public health challenge facing the U.S. HL is a critical factor in health inequities and exacerbates underlying social determinants of health. Purpose: This study assesses the association between low HL (LHL) and adverse health behaviors, which contribute to poor health. Methods: Researchers used North Carolina's 2016 Behavioral Risk Factor Surveillance System data, namely, the Health Literacy optional module which asks respondents to rate how difficult it is for them to get health-related advice or to understand medical information (verbal or written). Health behaviors analyzed were excessive alcohol consumption, lack of adequate exercise and sleep, and irregular medical and dental check-ups. The sample was divided into four age categories (18-49, 50-64, and 65-75, and 76 and older) for statistical comparisons. Stata 15 and a user-written Stata command, - psacalc-, were used to examine the relationships by addressing omitted variable bias in OLS regressions. Results: Findings indicate that LHL has a direct robust relationship with not exercising, inadequate sleep, irregular health and dental checkup, and health screenings across different age groups. Among women, LHL is associated with getting a Pap test in 3 years as opposed to more than 3 years. Implications: The adverse behaviors can explain the mechanisms underlying the link between LHL and adverse health outcomes. Further research on the causal relationship between LHL and adverse health behaviors using longitudinal data on a broader geographic region is warranted.

Measuring the unmet needs of American military Veterans and their caregivers: Survey protocol of the HERO CARE survey.

BACKGROUND: Empowering Veterans to age in place is a Department of Veterans Affairs priority. Family or unpaid caregivers play an important role in supporting Veterans to achieve this goal. Effectively meeting the needs of Veterans and caregivers requires identifying unmet needs and relevant gaps in resources to address those needs. METHODS: Using a modified Socio-Ecological Model, we developed a prospective longitudinal panel design survey. We randomly selected 20,000 community-dwelling Veterans enrolled in the Veterans Health Administration (VHA), across five VHA sites. We oversampled Veterans with a higher predicted 2-year long-term institutional care (LTIC) risk. Veterans were mailed a packet containing a Veteran survey and a caregiver survey, to be answered by their caregiver if they had one. The Veteran survey assessed the following health-related domains: physical, mental, social determinants of health, and caregiver assistance. Caregivers completed questions regarding their demographic factors, caregiving activities, impact of caregiving, use of VA and non-VA services, and caregiver support resources. Follow-up surveys will be repeated twice at 12-month intervals for the same respondents. This article describes the HERO CARE survey protocol, content, and response rates. RESULTS: We received responses from 8,056 Veterans and 3,579 caregivers between July 2021 and January 2022, with 95.6% being received via mail. Veteran respondents were mostly males (96.5%), over 65 years of age (94.9%), married (55.0%), Non-Hispanic White (75.2%), and residing in urban areas (80.7%). CONCLUSIONS: This longitudinal survey is unique in its comprehensive assessment of domains relevant to older Veterans stratified by LTIC risk and their caregivers, focusing on social determinants, caregiver support, and the use of caregiver support resources. Survey data will be linked to Centers for Medicare & Medicaid Services and VA data. The results of this study will inform better planning of non-institutional care services and policy for Veterans and their caregivers.

Feasibility and Efficacy of Life Review Delivered by Virtually-Trained Family Caregivers.

BACKGROUND: Due to the high prevalence of depressive symptoms and Alzheimer's disease and related dementias in older Americans (≥65 years), we developed a six-week depression intervention, Caregiver-Provided Life Review (C-PLR) for care recipients (CRs) with early-stage dementia and mild depression. OBJECTIVE: The objective of the study was to examine the feasibility and efficacy of C-PLR delivered by virtually-trained caregivers (CGs) on CRs who live with dementia and depression in community and long-term care settings (N = 25 CG-CR dyads). METHODS: We used fidelity scores as a measure of CG's feasibility to provide C-PLR. We collected the pre- and post-measures on CRs' depression (primary outcome), life satisfaction, CGs' burden, positive aspects of caregiving, and CG-CR relationship quality (secondary outcomes) and compared them using paired t-tests. We evaluated if the effect differed by race/ethnicity, residential setting, or living alone. RESULTS: The average fidelity check-in score was 14.8±0.78 indicating high feasibility. CGs were 52 years old (mean), 88% female, 64% working, 72% college-educated, and 72% in good-excellent health. CRs were 81 years old (mean), 84% female, and 56% in poor-fair health. CRs' depression significantly improved (p < 0.001), and this effect was found in CRs who were Asian (p = 0.017), White (p = 0.040), community-dwelling (p < 0.001), lived alone (p = 0.045), or with others (p = 0.002). CONCLUSION: This study demonstrated that the C-PLR can be successfully taught to CGs virtually and is effective in reducing CR's depressive symptoms. C-PLR could be implemented more broadly to improve symptoms among CRs in community and residential settings, as well as among a diverse population of CRs.

COVID-19 pandemic experiences among people with epilepsy: Effect on symptoms of co-occurring health conditions and fear of seizure.

OBJECTIVE: The Coronavirus disease 2019 (COVID-19) pandemic profoundly affected people worldwide, but little is known about how it impacted people with epilepsy (PWE). We examined the associations between COVID-19 stressors and health outcomes including increases in other health symptoms and fear of seizure among PWE. METHODS: This cross-sectional study used data from an online survey that asked about demographic characteristics, health conditions, and potential life stressors during COVID-19. Data were collected from October 30 to December 8, 2020. COVID-19 stressors were anger, anxiety, stress, healthcare access, fear of seeking healthcare, social isolation, sense of control over their lives, and alcohol consumption. A binary variable was created for each of these measures to indicate whether PWEs experienced a negative change versus a neutral or positive change. We used multivariable logistic regression to assess the associations of COVID-19 stressors with primary outcomes: exacerbated co-occurring health conditions and increasing fear of seizure during the pandemic. RESULTS: Of the 260 PWE included in the study, 165 (63.5%) were women; the average age was 38.7 years. During the survey administration period, 79 (30.3%) of the respondents reported exacerbated co-occurring health conditions, and 94 (36.2%) reported an increased fear of seizures. Regression results indicated that the fear of seeking healthcare during COVID-19 was associated with both exacerbated co-occurring health conditions (aOR 1.12; 95%CI 1.01-1.26) and increasing fear of seizure (aOR 2.31; 95%CI 1.14-4.68). Social isolation was associated with exacerbated co-occurring health conditions during COVID-19 (aOR 1.14; 95%CI 1.01-1.29). Reduced access to physical healthcare was associated with increasing fear of seizure (aOR 2.58; 95%CI 1.15-5.78). CONCLUSION: A considerable number of PWE experienced more symptoms of existing health conditions and fear of seizure during the initial year of the pandemic (2020). Fear of seeking healthcare services was associated with both negative outcomes. Assuring access to health care and reducing social isolation could potentially reduce negative outcomes for PWE. It is necessary to provide adequate support for PWE to reduce risks as COVID-19 continues to be a health concern.

Getting back to normal? Identity and role disruptions among adults with Long COVID.

Long COVID is a novel chronic illness with a variety of symptoms that people who have labelled themselves 'long-haulers' experience for an extended duration following a COVID-19 infection. We draw on in-depth interviews conducted in March-April 2021 with 20 working-aged adults in the U.S. who self-identified as long-haulers to understand the consequences for identities. The results demonstrate that Long COVID has important consequences for identities and sense of self. Long-haulers described experiencing three stages of biographical disruptions: realising their illness experience as misaligned with sense of self and embodied, age-based expectations; facing challenges to identities and changes in social roles; and reconciling illness and identity in the context of an uncertain prognosis. It remains unclear how long-haulers will resolve biographical disruptions and identity conflicts, especially as scientific insights about this novel condition emerge. Such outcomes may depend largely on whether Long COVID remains a contested illness or medical knowledge progresses to improve their quality of life. For now, healthcare providers may approach Long COVID holistically to address the identity disruptions that long-haulers face as they manage the consequences of this chronic illness.

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic.

INTRODUCTION: Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers' pandemic-related changes and experiences - namely those related to their health, healthcare access, and well-being - were associated with their caregiving burden. METHODS: Caregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden. RESULTS: Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes. DISCUSSION: Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes. CONCLUSION: Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.

Dementia Caregiving Experiences and Health Across Geographic Contexts by Race and Ethnicity.

OBJECTIVES: Few studies have examined how the intersectionality of geographic context and race/ethnicity influences dementia caregiving. Our objectives were to determine whether caregiver experiences and health (a) differed across metro and nonmetro areas and (b) differed by caregiver race/ethnicity and geography. METHODS: We used data from the 2017 National Health and Aging Trends Study and National Study of Caregiving. The sample included caregivers (n = 808) of care recipients ages 65 and older with "probable" dementia (n = 482). The geographic context was defined as the care recipient's residence in metro or nonmetro counties. Outcomes included caregiving experiences (care situation, burden, and gains) and health (self-rated anxiety, depression symptoms, and chronic health conditions). RESULTS: Bivariate analyses indicated that nonmetro dementia caregivers were less racially/ethnically diverse (82.7% White, non-Hispanic) and more were spouses/partners (20.2%) than their metro counterparts (66.6% White, non-Hispanic; 13.3% spouses/partners). Among racial/ethnic minority dementia caregivers, nonmetro context was associated with more chronic conditions (p < .01), providing less care (p < .01), and not coresiding with care recipients (p < .001). Multivariate analyses demonstrated that nonmetro minority dementia caregivers had 3.11 times higher odds (95% confidence interval [CI] = 1.11-9.00) of reporting anxiety in comparison to metro minority dementia caregivers. DISCUSSION: Geographic context shapes dementia caregiving experiences and caregiver health differently across racial/ethnic groups. Findings are consistent with previous studies that have shown that feelings of uncertainty, helplessness, guilt, and distress are more prevalent among people providing caregiving from a distance. Despite higher rates of dementia and dementia-related mortality in nonmetro areas, findings suggest both positive and negative aspects of caregiving among White and racial/ethnic minority caregivers.

Association between specific unmet functional needs and desire to institutionalize among caregivers of older veterans.

OBJECTIVES: To evaluate the associations between specific functional needs of older Veterans and the desire to institutionalize (DTI) among their caregivers. METHODS: Cross-sectional multivariable logistic regression analysis of 3579 Hero Care survey responses from caregivers of Veterans at five US sites from July to December 2021. Unmet needs were areas in which the caregiver reported the Veteran needed a little more or a lot more help. Caregiver DTI was defined as the caregiver reporting that they had discussed, considered, or taken steps toward a nursing home or assisted living placement for the Veteran or that they felt the Veteran would be better off in such a setting or they were likely to move the Veteran to another living arrangement. RESULTS: Caregivers were largely white, retired, females with an average age of 71 and with some college education who spent an average of 8-9 h per day 6 days a week caring for a Veteran spouse. There was evidence of associations between the following needs and a DTI: managing incontinence, using the telephone, transportation, and arranging services in the home such as visiting nurses, home care aides, or meals on wheels. Unmet functional needs in other selected domains were not associated with the DTI. CONCLUSION: Among caregivers of older Veterans, a need for more assistance managing incontinence, telephone use, transportation, and arranging in-home services were associated with the DTI. These may represent functional markers of important clinical determinants for institutionalization as well as potential targets for intervention to reduce caregiver DTI, such as programs that provide more caregiver or Veteran support in the home to meet these needs and reduce caregiver burden.

Flu Vaccine Uptake in Caregivers and Noncaregivers: Implications for Policy and Practice.

INTRODUCTION: Caregivers are a critical and highly used health care resource. Caregivers may experience adverse health outcomes and practice less self-care, including obtaining vaccinations, while serving in their roles. Influenza (flu) is a common infectious disease responsible for millions of doctor visits, hospitalizations, and approximately 43,000 US deaths annually that can largely be prevented by receiving seasonal vaccinations. We aimed to estimate and compare the prevalence of flu vaccination among caregivers and noncaregivers. We hypothesized that caregivers would have a lower prevalence of flu vaccination than noncaregivers and that sociodemographic variables, health-related variables, and caregiving-specific characteristics would be associated with vaccine uptake. METHODS: We analyzed Behavioral Risk Factor Surveillance System data from 2016 through 2018 on 154,170 respondents from 27 US states and the District of Columbia. We used bivariate analysis to estimate the difference in flu vaccination uptake among caregivers and noncaregivers and logistic regression to estimate differences after adjusting for individuals' characteristics. RESULTS: Logistic regression indicated no significant difference in flu vaccine uptake between caregivers and noncaregivers. Caregiving characteristics such as years in a caregiver role, weekly time spent caregiving, relationship to care recipient, and recipient's risk for flu complications were also nonsignificant. Sociodemographic factors such as marital status, income, health insurance coverage, and race had a significant impact on flu vaccine uptake. CONCLUSION: Although no significant differences in flu vaccine uptake were found between caregivers and noncaregivers, flu vaccine coverage remains low in both groups. Evidence-based programs and policies to improve vaccine coverage in the caregiver and general populations remains a public health priority.

Comparing the Primary Concerns of Injured Collegiate Athletes With the Content of Patient-Reported Outcome Measures.

CONTEXT: Patient-reported outcome measures (PROMs) have been endorsed for providing patient-centered care. However, PROMs must represent their target populations. OBJECTIVE: To identify the primary concerns of collegiate athletes experiencing injury and compare those with the content of established PROMs. DESIGN: Cross-sectional study. SETTING: Collegiate athletic training facilities. PATIENTS OR OTHER PARTICIPANTS: Collegiate athletes experiencing injury (N = 149). MAIN OUTCOME MEASURE(S): Open-ended responses to the Measure Yourself Medical Outcome Profile were used to identify primary concerns, which were linked to International Classification of Functioning, Disability and Health taxonomy codes. Items of the Patient-Reported Outcomes Measurement Information System; modified Disablement of the Physically Active Scale; Lower Extremity Functional Scale; Knee injury and Osteoarthritis Outcome Score (KOOS); International Knee Documentation Committee Subjective Knee Form (IKDC); Foot and Ankle Ability Measure; Disabilities of the Arm, Shoulder, and Hand; Functional Arm Scale for Throwers; and Kerlan-Jobe Orthopaedic Clinic questionnaire were linked to International Classification of Functioning, Disability and Health codes. We calculated χ2 single-sample goodness-of-fit tests to determine if 70% of the content was shared between PROMs and participant-generated codes. RESULTS: Participant-generated concerns were primarily related to sport participation (16%) and pain (23%). Chi-square tests showed that the Lower Extremity Functional Scale and Foot and Ankle Ability Measure presented significant content differences, with common participant-generated lower extremity responses at all levels. The Patient-Reported Outcomes Measurement Information System; modified Disablement of the Physically Active Scale; KOOS; IKDC; Disabilities of the Arm, Shoulder and Hand; Functional Arm Scale for Throwers; and Kerlan-Jobe Orthopaedic Clinic questionnaire did not have significant content differences for level 2 codes; still, significant differences were present for level 3 analyses except for the KOOS and IKDC (P < .001). All measures except the IKDC contained significant superfluous content (P < .05). CONCLUSIONS: The presence of significant content differences supports clinician-perceived barriers regarding the relevance of established PROMs. However, the IKDC was a relevant and efficient PROM for evaluating the primary concerns of collegiate athletes experiencing lower extremity injury. Clinicians should consider using patient-generated measures to support coverage of patient-specific concerns in care.

Characteristics of Asian American Family Caregivers of Older Adults Compared to Caregivers of Other Racial/Ethnic Groups: Behavioral Risk Factor Surveillance System 2015-2020.

Asian Americans (AAs) are the fastest-growing racial/ethnic minority group in the United States. While otherwise highly heterogeneous, AAs overall value filial piety and eldercare. This study compared the health and caregiving experiences of AA caregivers of older adults to AA non-caregivers and caregivers of older adults across racial/ethnic groups. We used 2015-2020 Behavioral Risk Factor Surveillance System data for 315 AA caregivers and 3822 AA non-caregivers, plus 395 American Indian/Alaska Native, 1883 Black, 1292 Hispanic, and 20,321 non-Hispanic White caregivers. Among AAs, 4.3% were caregivers, a lower proportion than in other racial/ethnic groups. Most AA caregivers were female (59%), married (71%), in excellent/very good/good health (76%), and with at least one chronic health condition (66%). Other than relationship to care recipients, caregivers' experiences were similar across racial/ethnic groups: most cared for <20 hours/week and provided household and personal care. Efforts to support AA caregivers should be attentive to cultural practices.

Support amid uncertainty: Long COVID illness experiences and the role of online communities.

Long COVID is characterized by persistent and debilitating long-term symptoms from COVID-19. Many persons with Long COVID began gathering in online communities during the early phases of the pandemic to share their illness experiences. This qualitative interview study explored the subjective experiences of 20 persons with Long COVID recruited from five online communities. Their understandings of illness and associated implications for social relationships with family and friends, healthcare professionals, and online community members were explored. Three themes were identified from our analysis, including (1) complex and unpredictable illness experienced amid an evolving understanding of the pandemic; (2) frustration, dismissal, and gaslighting in healthcare interactions; and (3) validation and support from online communities. These findings highlight the significant uncertainty that persons with Long COVID navigated, the features of their often dismaying healthcare experiences, and the ways in which online communities aided them in understanding their illness.

Virtual Intergenerational Reverse-Mentoring Program Reduces Loneliness among Older Adults: Results from a Pilot Evaluation.

Social isolation and loneliness can create negative health outcomes for older adults. Informed by social capital and intergroup contact theories, our goal was to reduce these social problems using an intergenerational reverse-mentoring program. During fall 2020, we implemented an adapted, fully online version of Cyber-Seniors that encouraged undergraduate students to provide technology mentoring to local older adults in a seven-county area in rural Appalachia. We recruited gerontology students through the university and local older adults through local aging organizations. We collected data through pre-and post-tests that included validated measures (Lubben Social Network Scale-6 and UCLA 3-item loneliness scale) and open-ended questions about the program. Thirty-one students and nine older adults completed the pre-survey; twenty students and eight older adults completed the post-survey. We made comparisons using t-tests and considered p < 0.20 to indicate meaningful differences given the anticipated small sample size in this pilot project. Isolation did not change among older adults but increased among students in the family domain (p = 0.14) between baseline and follow-up. Loneliness improved between the pre- and post-tests among older adults (mean: 5.6 (SD = 2.2) to 4.1 (SD = 1.3), p = 0.17) but not among students (mean: 5.0 (SD = 1.5) to 5.2 (SD = 1.7), p = 0.73). In open-ended responses, older adults described learning new ways to interact with friends and family as a result of the program. This program was acceptable and suggested effectiveness in an important health-related domain (loneliness). While larger studies are needed to fully test the program's impact, this pilot evaluation suggests that reverse mentoring programs can be implemented virtually and may improve social outcomes.

Behavioral determinants for COVID-19 vaccine acceptance among students, faculty, and staff at a rural public university.

Background: Vaccine hesitancy for COVID-19 is a major obstacle to achieving high vaccine coverage. Low vaccine confidence among college students is one factor fueling the COVID-19 pandemic in the U.S. Objective: The purpose of this study was to evaluate COVID-19 vaccine hesitancy and barriers to vaccine uptake among students, faculty, and staff at a rural public university. Method: We used the Barrier Analysis (BA) mixed-methods approach, which explores determinants of the desired behavior using the Health Belief Model and Theory of Reasoned Action. We developed a BA questionnaire and distributed it through Qualtrics to 4,600 randomly selected students (n = 4,000), faculty (n = 300), and staff (n = 300) from March 11 to April 1, 2021. We defined Acceptors as those who were willing to be vaccinated and Non-acceptors as those who were not. Results: Our analysis found that among Non-acceptors, perceived social norms, perceived negative consequences, and trust had the highest association with COVID-19 vaccine hesitancy among students, faculty, and staff. Conclusion: These findings illustrate the need to develop effective behavior change strategies for COVID-19 vaccines uptake that identify sources of trusted information among vaccine-hesitant college students, faculty, and staff, while leveraging enablers to increase COVID-19 vaccination coverage on university campuses.

Universities' communication of COVID-19 cases through online dashboards.

Objective: This study's purpose was to explore universities' online dashboards that communicate information about COVID-19 cases to campus communities, and if dashboards adhere to American College Health Association (ACHA) recommendations. Methods: The websites of all four-year, public universities with an enrollment of at least 10,000 students were analyzed for the presence of COVID-19 dashboards, if dashboards contained recommended case features (eg, number of cases, tests, and people in quarantine/isolation), as well as other helpful features (eg, epidemiological curve, cluster information). Results: Of the 263 universities included in the study, 76% had a dashboard, but only 15% contained all recommended features. Most (62%) had an epidemiological curve, but few (3%) reported information related to clusters. Conclusion: Dashboards display case information and encourage behavior change; however, there is a need for improved adherence to the ACHA's recommendations for COVID-19 dashboards to maximize their potential impact on campus communities.