Care crises and care fixes under Covid-19: the example of transnational live-in care work

The COVID-19 pandemic brought care work to the forefront of attention. In many countries in the Global North, people became painfully aware that they had ‘outsourced' a considerable share of this work to temporary migrants. Travel restrictions and lockdown measures disrupted transnational care arrangements and threatened the continuous provision of care. This article uses the example of transnationally organised live-in care in Switzerland to explore measures implemented to maintain care provision during the pandemic. Particularly, it investigates the impacts of these measures on the working conditions and lives of live-in care workers. We build on Emma Dowling's conceptualisation of ‘care fixes' and Brigitte Aulenbacher's notions of ‘abstraction' and ‘appropriation' to identify three short-term solutions and argue that they did not solve, but rather only displaced the underlying care crisis. Our insights are based on the analysis of policy documents, 32 in-depth interviews and informal conversations with workers, clients, care agencies and other experts carried out in Switzerland between April 2020 and April 2021. We emphasise the inequalities implicated in transnational care arrangements and their inherent fragility, both of which were exacerbated by the pandemic. We tentatively point to avenues for contestation and for a revaluation of care, which opened up as result of the pandemic-induced disruption of care.

Association between racial discrimination and delayed or forgone care amid the COVID-19 pandemic.

Racial discrimination has intensified in the U.S. during the COVID-19 pandemic, but how it disrupted healthcare is largely unknown. This study investigates the association of racial discrimination with delaying or forgoing care during the pandemic based on data from a nationally representative survey, the Health, Ethnicity and Pandemic (HEAP) study (n = 2552) conducted in October 2020 with Asians, Hispanics and non-Hispanic Blacks oversampled. Racial discrimination during the pandemic was assessed in three domains: experienced racial discrimination, race-related cyberbullying, and Coronavirus racial bias beliefs. Respondents answered whether they had delayed or forgone any type of healthcare due to the pandemic. Overall, 63.7% of respondents reported delaying or forgoing any healthcare during the pandemic. About 20.3% East/Southeast Asians, 18.6% non-Hispanic Blacks and 15.9% Hispanics reported experiences of racial discrimination, compared with 2.8% of non-Hispanic Whites. Experienced racial discrimination was associated with delaying/forgoing care among non-Hispanic Blacks (Adjusted odds ratios[AOR] = 4.58, 95% confidence interval[CI]: 2.22-9.45), Hispanics (AOR = 3.88, 95%CI: 1.51-9.98), and East/Southeast Asians (AOR = 2.14, 95%CI: 1.22-3.77). Experiencing race-related cyberbullying was significantly associated with delaying/forgoing care among non-Hispanic Blacks (AOR = 1.34, 95%CI: 1.02-1.77) and East/Southeast Asians (AOR = 1.51, 95%CI: 1.19-1.90). Coronavirus racial bias was significantly associated with delaying/forgoing care among East/Southeast Asians (AOR = 1.55, 95%CI: 1.16-2.07). The three domains of racial discrimination were consistently associated with delayed or forgone health care among East/Southeast Asians during the COVID-19 pandemic; some of the associations were also seen among non-Hispanic Blacks and Hispanics. These results demonstrate that addressing racism is important for reducing disparities in healthcare delivery during the pandemic and beyond.

The Impact of the COVID-19 Pandemic on Cancer Care and Health-Related Quality of Life of Non-Hispanic Black/African American, Hispanic/Latina and Non-Hispanic White Women Diagnosed with Breast Cancer in the U.S.: A Mixed-Methods Study Protocol.

The COVID-19 pandemic has had critical consequences for cancer care delivery, including altered treatment protocols and delayed services that may affect patients' quality of life and long-term survival. Breast cancer patients from minoritized racial and ethnic groups already experience worse outcomes, which may have been exacerbated by treatment delays and social determinants of health (SDoH). This protocol details a mixed-methods study aimed at comparing cancer care disruption among a diverse sample of women (non-Hispanic White, non-Hispanic Black/African American, and Hispanic/Latina) and assessing how proximal, intermediate, and distal SDoH differentially contribute to care continuity and health-related quality of life. An embedded mixed-methods design will be implemented. Eligible participants will complete an online survey, followed by a semi-structured interview (with a subset of participants) to further understand factors that influence continuity of care, treatment decision-making, and self-reported engagement. The study will identify potentially modifiable factors to inform future models of care delivery and improve care transitions. These data will provide the necessary evidence to inform whether a subsequent, multilevel intervention is warranted to improve quality of care delivery in the COVID-19 aftermath. Additionally, results can be used to identify ways to leverage existing social resources to help manage and support patients' outcomes.

Examining the association among fear of COVID-19, psychological distress, and delays in cancer care.

BACKGROUND: Given the high risk of COVID-19 mortality, patients with cancer may be vulnerable to fear of COVID-19, adverse psychological outcomes, and health care delays. METHODS: This longitudinal study surveyed the pandemic's impact on patients with cancer (N= 1529) receiving Patient Advocate Foundation services during early and later pandemic. Generalized estimating equation with repeated measures was conducted to assess the effect of COVID-19 on psychological distress. Logistic regression with repeated measures was used to assess the effect of COVID-19 on any delays in accessing health care (e.g., specialty care doctors, laboratory, or diagnostic testing, etc.). RESULTS: Among 1199 respondents, 94% considered themselves high risk for COVID-19. Respondents with more fear of COVID-19 had a higher mean psychological distress score (10.21; 95% confidence intervals [CI] 9.38-11.03) compared to respondents with less fear (7.55; 95% CI 6.75-8.36). Additionally, 47% reported delaying care. Respondents with more fear of COVID-19 had higher percentages of delayed care than those with less (56; 95% CI 39%-72% vs. 44%; 95% CI 28%-61%). These relationships persisted throughout the pandemic. For respondents with a COVID-19 diagnosis in their household (n = 116), distress scores were similar despite higher delays in care (58% vs. 27%) than those without COVID-19. CONCLUSIONS: Fear of COVID-19 is linked to psychological distress and delays in care among patients with cancer. Furthermore, those who are personally impacted see exacerbated cancer care delays. Timely psychosocial support and health care coordination are critical to meet increased care needs of patients with cancer during the COVID-19 pandemic.

Outreach Method Predicts Patient Re-engagement in Diabetes Care During Sustained Care Disruption.

OBJECTIVE: During the COVID-19 pandemic, visits for diabetes care were abruptly canceled without predefined procedures to re-engage patients. This study was designed to determine how outreach influences patients to maintain diabetes care and identify factors that might impact the intervention's efficacy. METHODS: A diabetes nursing team attempted outreach for patients who had a canceled appointment for diabetes between March 16, 2020, and June 19, 2020. Outreach status was defined as reached, message left, or no contact. Outcomes were defined as follows: (1) booking and (2) keeping a follow-up appointment. RESULTS: Seven hundred eighty-seven patients were included (384 [49%] were reached, 152 (19%) were left a message, and 251 (32%) had no contact). Reached patients were more likely to book [odds ratio (OR) = 2.43, P < .001] and keep an appointment (OR = 2.39, P < .001) than no-contact patients. Leaving a message did not increase the odds of booking (OR = 1.05, P = .84) or keeping (OR = 1.17, P = .568) an appointment compared with no contact. Older age was a significant predictor of booking an appointment (OR = 1.014 for each year of age, P = .037). Patients on insulin were more likely to keep their appointment (OR = 1.70, P = .008). Patients with a higher hemoglobin A1C level were less likely to keep their appointment (OR = 0.87 for each 1.0% increase in the hemoglobin A1C level, P = .011). CONCLUSION: These findings suggest that to optimize re-engagement during care disruption, 1-way communication is no better than no contact and that 2-way communication increases the likelihood that patients will maintain access to care. In addition, although higher-risk patients (eg, patients with older age or those on insulin) may be more incentivized to stay engaged, targeted outreach is needed for those with chronically poor glycemic control.

Pragmatic clinic randomized trial to improve chronic kidney disease care: Design and adaptation due to COVID disruptions.

BACKGROUND: We describe a clinic-randomized trial to improve chronic kidney disease (CKD) care through a CKD-clinical decision support (CKD-CDS) intervention in primary care clinics and the challenges we encountered due to COVID-19 care disruption. METHODS/DESIGN: Primary care clinics (N = 32) were randomized to usual care (UC) or to CKD-CDS. Between April 17, 2019 and March 14, 2020, more than 7000 patients had accrued for analysis by meeting study-eligibility criteria at an index office visit: age 18-75, laboratory criteria for stage 3 or 4 CKD (eGFR 15-59 mL/min/1.73 m2), and one or more opportunities algorithmically identified to improve CKD care such as blood pressure (BP) or glucose control, angiotensin converting enzyme inhibitor (ACEI) or angiotensin receptor blocker (ARB) use, discontinuance of a nonsteroidal anti-inflammatory drug (NSAID), or nephrology referral. At CKD-CDS clinics, CDS provided individualized treatment suggestions that were printed for patients and clinicians at the start of office encounters and were viewable within the electronic health record. By initial design, the impact of the CKD-CDS intervention on care gaps was to be assessed 12 months after the index date, but COVID-19 caused major disruptions to care delivery during the intervention period. In response to disruptions, the intervention was temporarily suspended while we expanded CDS use for telehealth encounters and programmed new criteria for displaying the CKD-CDS to intervention patients due to clinic closures and scheduling changes. DISCUSSION: We describe a NIH-funded pragmatic trial of web-based EHR-integrated CKD-CDS and modifications necessary mid-study to complete the study as intended in the face of COVID-19 pandemic challenges.

Pandemics and Burden of Stroke and Epilepsy in Sub-Saharan Africa: Experience from a Longstanding Health Programme.

Eighty percent of people with stroke live in low- to middle-income nations, particularly in sub-Saharan Africa (SSA) where stroke has increased by more than 100% in the last decades. More than one-third of all epilepsy-related deaths occur in SSA. HIV infection is a risk factor for neurological disorders, including stroke and epilepsy. The vast majority of the 38 million people living with HIV/AIDS are in SSA, and the burden of neurological disorders in SSA parallels that of HIV/AIDS. Local healthcare systems are weak. Many standalone HIV health centres have become a platform with combined treatment for both HIV and noncommunicable diseases (NCDs), as advised by the United Nations. The COVID-19 pandemic is overwhelming the fragile health systems in SSA, and it is feared it will provoke an upsurge of excess deaths due to the disruption of care for chronic diseases such as HIV, TB, hypertension, diabetes, and cerebrovascular disorders. Disease Relief through Excellent and Advanced Means (DREAM) is a health programme active since 2002 to prevent and treat HIV/AIDS and related disorders in 10 SSA countries. DREAM is scaling up management of NCDs, including neurologic disorders such as stroke and epilepsy. We described challenges and solutions to address disruption and excess deaths from these diseases during the ongoing COVID-19 pandemic.