The needs of family caregivers of persons living with dementia cared for in primary care practices.

RATIONALE: The informal caregivers who provide unpaid support for persons living with dementia (PLWD) are often unprepared to appropriately manage symptoms and navigate health services to support themselves or the PLWD. AIM: To understand informal caregivers' perceived capabilities of handling dementia symptomology and perceived support from providers. METHODS: We identified and surveyed caregivers of primary care patients in the Mass General Brigham health system. We included a self-efficacy questionnaire to assess caregivers' ability and confidence in access to dementia care, symptom management, and provider support. RESULTS: Respondents indicated that although their provider had knowledge of dementia and memory care, they were least likely to agree (39.2%) that their provider helped them with these challenging symptoms. Those who live with the care recipient were least likely to receive advice about common symptoms (43.6%) and to access community services (63.8%), and in general felt moderately knowledgeable about the progression of the disease (47.9%). CONCLUSIONS: The findings imply that caregivers are aware of disease progression, dementia symptoms, and do not feel supported by their providers in managing care or accessing support services. There is opportunity to support informal caregivers in a primary care setting by appropriately uptraining providers in dementia care.

Views on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds.

Down syndrome (DS) has a unique medical and psychological profile. To date, few studies have asked individuals with DS about their views of health, and fewer have explored the impact of COVID-19 on the health of individuals with DS and their families. We used a mixed methods approach including two studies on the health of individuals with DS and their parents conducted during the COVID-19 pandemic: (1) eight virtual focus groups, comprised of 20 parents and 8 individuals with DS to obtain participants' views of health, and (2) a 20-item questionnaire on health care experience of patients with DS who are African American or come from primarily Spanish-speaking homes. Focus group transcripts were coded using a hybrid inductive/deductive framework and thematically analyzed using the Framework Method. This questionnaire included questions regarding the impact of COVID-19 on caregivers and their loved ones with DS; responses to these questions were summarized using descriptive statistics. Individuals with DS discussed the impact of the COVID-19 pandemic on their physical and social health including masking, online learning, and online communication with friends and family. Parents of individuals with DS discussed how the COVID-19 pandemic negatively impacted their child's physical, social, and mental health, as a result of virtual schooling and decreased socialization. There were unexpected positives of the pandemic such as improved hygiene and eased scheduling with telehealth visits. Caregivers noted COVID-19 impacted their own anxiety, employment, and other domains that have potential ripple effects on the health of their children. The COVID-19 pandemic had a pervasive impact on the mental health and wellness of caregivers as well as the physical, social, and mental health of individuals with DS.

Healthcare experiences of patients with Down syndrome from primarily Spanish-speaking households.

We report on the health care experiences of individuals with Down syndrome (DS) from families who are primarily Spanish-speaking. Data were collected through three methods: (1) a nationally distributed, 20-item survey, (2) two focus groups with seven family caregivers of individuals with DS who self-identified as living in primarily Spanish speaking households, and (3) 20 interviews with primary care providers (PCPs) who care for patients who are underrepresented minorities. Standard summary statistics were used to analyze the quantitative survey results. Focus group and interview transcripts, as well as an open-ended response question in the survey, were analyzed using qualitative coding methods to identify key themes. Both caregivers and PCPs described how language barriers make giving and receiving quality care difficult. Caregivers additionally described condescending, discriminatory treatment within the medical system and shared feelings of caregiver stress and social isolation. Challenges to care experienced by families of individuals with DS are compounded for Spanish-speaking families, where the ability to build trust with providers and in the health care system may be compromised by cultural and language differences, systemic issues (lack of time or inability to craft more nuanced schedules so that patients with higher needs are offered more time), mistrust, and sometimes, overt racism. Building this trust is critical to improve access to information, care options, and research opportunities, especially for this community that depends on their clinicians and nonprofit groups as trusted messengers. More study is needed to understand how to better reach out to these communities through primary care clinician networks and nonprofit organizations.

Group Home Staff Experiences With Work and Health in the COVID-19 Pandemic in Massachusetts.

Importance: Direct reports of the experiences of staff working in group homes for people with serious mental illness (SMI) and/or intellectual or developmental disabilities (ID/DD) are rarely reported. Hearing from workers about their experiences in the COVID-19 pandemic may inform future workforce and public policy. Objective: To gather baseline data on worker experience with the perceived effects of COVID-19 on health and work in the pandemic prior to initiating an intervention to mitigate the spread of COVID-19 and to measure differences in worker experience by gender, race, ethnicity, education, and resident population served (persons with SMI and/or IDD/DD). Design, Setting, and Participants: This mixed-mode, cross-sectional survey study was conducted using online then paper-based self-administration from May to September 2021 at the end of the first year of the pandemic. Staff working in 415 group homes that provided care within 6 Massachusetts organizations serving adults aged 18 years or older with SMI and/or ID/DD were surveyed. The eligible survey population included a census of staff who were currently employed in participating group homes during the study period. A total of 1468 staff completed or partially completed surveys. The overall survey response rate was 44% (range by organization, 20% to 52%). Main Outcomes and Measures: Self-reported experiential outcomes were measured in work, health, and vaccine completion. Bivariate and multivariate analyses explore experiences by gender, race, ethnicity, education, trust in experts and employers, and population served. Results: The study population included 1468 group home staff (864 [58.9%] women; 818 [55.7%] non-Hispanic Black; 98 [6.7%] Hispanic or Latino). A total of 331 (22.5%) group home staff members reported very serious perceived effects on health; 438 (29.8%) reported very serious perceived effects on mental health; 471 (32.1%) reported very serious perceived effects on health of family and friends; and 414 reported very serious perceived effects (28.2%) on access to health services, with statistically significant differences observed by race and ethnicity. Vaccine acceptance was higher among persons with higher educational attainment and trust in scientific expertise and lower among persons who self-reported as Black or Hispanic/Latino. A total of 392 (26.7%) respondents reported needing support for health needs, and 290 (19.8%) respondents reported needing support for loneliness or isolation. Conclusions and Relevance: In this survey study, approximately one-third of group home workers reported serious personal health and access to health care barriers during the first year of the COVID-19 pandemic in Massachusetts. Addressing unmet health needs and access to health and mental health services, including inequities and disparities by race, ethnicity, and education, should benefit staff health and safety, as well as that of the individuals with disabilities who rely on them for support and care.

Healthcare experiences of patients with Down syndrome who are Black, African American, of African descent, or of mixed race.

Scant research has explored the healthcare experiences of people with Down syndrome (DS) in the United States who are Black, African American, of African descent, or of mixed race. The purpose of this study was to identify and describe the barriers and facilitators that such patients and their caregivers face when accessing healthcare. We gathered data in three ways: focus groups with caregivers, a national survey completed by caregivers, and in-depth interviews with primary care providers. Many caregivers and primary care physicians felt that patients with DS who are Black, African American, of African descent, or of mixed race receive a lower quality of medical care than their white counterparts with DS. Caregivers mentioned feeling tired of being reminded by the medical community about their race and wanting acknowledgment that raising a child with DS can be hard at times. Many felt that the medical community's conscious and unconscious racial biases do negatively impact the care of their loved ones with DS. Caregivers desired more race concordant medical providers or, when not possible, medical providers who are willing to learn more about DS and build trusted, longitudinal relationships. Primary care providers discussed the need for funded resources and support services to effectively care for their patients with DS.

The role of race, ethnicity, and language in care transitions.

OBJECTIVES: To identify areas where transition from hospital to community could be improved, with a special focus on racial, ethnic, and language differences. STUDY DESIGN: A cross-sectional survey administered by postal mail and bilingual telephone interviewers. METHODS: Patients were randomly selected within strata by race, ethnicity, and language proficiency. A total of 224 patients (response rate: 63.5%) who had recently experienced a hospital stay completed the survey. RESULTS: Overall, 1 in 4 patients were alone at discharge. More than half of patients with limited English proficiency reported lack of access to medical interpreters and translated materials. We noted significant differences by race, ethnicity, and language in technology access and in patient-reported worries in the posthospital period. Hispanic or Latino patients and patients with limited English proficiency were less likely to report access to a computer and less likely to access the Patient Gateway portal. Black or African American patients were also less likely to use the Patient Gateway portal. Asian patients were more likely to be worried about getting home health services. CONCLUSIONS: Our findings highlight the enhanced difficulties that diverse patients may experience when transitioning from hospital to community-based settings. When considering how to best address the complex needs of diverse populations, interventions must be sensitive to the presence or absence of others, potential digital divides, and medical interpretation.

Patient and clinician experiences with telehealth for patient follow-up care.

OBJECTIVES: The increasing and widespread availability of personal technology offers patients and clinicians the opportunity to utilize real-time virtual communication to enhance access to health services. Understanding the perceived value of different modes of care may help to shape the future use of technology. STUDY DESIGN: Cross-sectional surveys of patients and clinicians participating in telehealth virtual video visits (VVVs) in an academic health system. METHODS: We administered surveys to 426 unique established patients and 74 attending physicians in our hospital to measure perceptions of the comparative experience of VVVs and office visits; 254 patients and 61 physicians completed the surveys. RESULTS: When comparing VVVs and office visits, 62.6% of patients and 59.0% of clinicians reported no difference in "the overall quality of the visit." VVVs were vastly preferred to office visits by patients for convenience and travel time. A majority (52.5%) of clinicians reported higher efficiency of a VVV appointment. CONCLUSIONS: For established patients, VVVs may provide effective follow-up and enhanced convenience when compared with traditional office visits.