Women and Alzheimer's disease risk: a focus on gender

A previous chapter highlighted the biological mechanisms by which female sex contributes to Alzheimer's disease (AD) risk and outcomes. However, discussion of AD in women is incomplete without considering the impact of female gender on AD risk, as gender encompasses psychosocial and cultural differences between women and men that also modulate risk for cognitive decline. The current chapter discusses several main social determinants of health and explains how women, as a historically oppressed population, may be particularly vulnerable to the effect of each on cognition. This chapter also considers the disproportionate female burden of dementia caregiving, how associated stresses augment risk for later cognitive decline among caregivers themselves, and how the COVID-19 pandemic may add to this risk. Understanding the gender-specific factors that affect AD risk and disease progression is essential for developing targeted preventative interventions and treatments. Future research is necessary to better characterize how social determinants of health uniquely impact female cognition compared to males. Moreover, future studies focused on gender identities outside of the male–female binary are critical to developing a holistic understanding of how gender may impact late-life cognition. © 2023 Elsevier Inc. All rights reserved.

Health-related quality of life, mental health and caregiver burden in children with autosomal recessive polycystic kidney disease (ARPKD)

Objective: To examine whether established patient-reported outcome measures are suitable for capturing the impact of ARPKD in children and their families. Method(s): We assessed 44 children with ARPKD (40 families) with respect to patients' health-related quality of life ((hr- QOL) using PedsQLTM ESRD module) and mental health (strength and difficulties questionnaire (SDQ)) as well as family and caregiver burden (Impact on family score (IFS) und Ulm inventory of parental caregiver QOL (ULQIE)) and compared them to published data and 36 healthy control children matched for age and time. Result(s): Patients were aged 9.5 +/- 5.9 years (vs. controls 8.8 +/- 5.0, p = ns) and 21 (48%) were female (vs. 19 controls (53%), p = ns). Mean eGFR was 81 ml/min*1.73m2 (range 4 - 165);7 received dialysis and 11 had functioning kidney transplants (KTX, 2 combined with liver transplants). Eight patients had developmental delay secondary to medical complications, while chronic illness was an exclusion criterion for healthy controls. 61 caregivers of affected children had same gender-distribution (61% vs. 60% mothers) and age (both 42 +/- 7 years) and number of dependent children (1.8 +/- 0.9 vs. 2.0 +/- 0.8) as 57 caregivers of healthy children. The mean proxy reported PedsQL Total score was 77.5 +/- 10.6 (range 59 - 96). It correlated significantly to eGFR (r = 0.5, p < 0.01, (also within the subpopulations pre- and post-KTX)). Parents reported greater mental health problems in affected than in control children with a higher SDQ total score mainly due to higher scores in the hyperactivity and peerinteraction subscales. ULQIE revealed that parents of affected children had significantly lower levels of physical functioning, self-fulfillment and general QOL, but despite higher emotional burden scores they indicated similar satisfaction with family life. Impact on family scores were in a similar range to those of children with moderate to severe disabilities. Conclusion(s): The good spread of PedsQLTM ESRD-scores and their correlation to renal function indicates that it captures significant aspects of ARPKD, however, it may need further adjustment to include liver complications. All four chosen instruments revealed significant impact of ARPKD on hrQOL and mental health of affected children as well as family life and parental wellbeing in comparison to healthy controls. More problems with peer-interactions may also be due to more stringent shielding of chronically ill children from social contacts during the COVID pandemic compared to healthy children.

Depression and burden in caregivers of onco-hematologic patients during SARS-Cov-2 pandemic

Aims: Onco-hematologic diseases (lymphomas, myeloma, leukemia) require intensive treatment regimens and represent a burden at the affective and instrumental level for their caregivers. The aim of this study was to investigate the link between caregiving burden and depressive symptoms in caregivers of onco-hematologic patients during the SARS-CoV-2 pandemic. Method(s): A convenience sample of 101 caregivers of onco-hematologic patients were recruited at the Hematology Unit of the Holy Spirit Hospital, Pescara, Italy. Most of the caregivers were female (80%) with an average age of 41 years old (SD = 14.01). Participants were administered the Caregiver Burden Inventory (CBI), the Patient Health Questionnaire-9 (PHQ-9) for depression, and the Fear of Covid-19 Scale (FCV-19S) during two months of the COVID-19-related stay-at-home period (April-May 2021). Result(s): Moderate-to-severe depression (PHQ-9 > 10) were reported by 36% of caregivers. Depressive symptoms were associated with caregivers' time-dependence (r = 0.43), developmental (r = 0.61), physical (r = 0.72), social (r = 0.60), and emotional burden (r = 0.43) (all ps < 0.001). CBI explained 53% of the PHQ-9 variance, particularly the physical (beta = 0.54, p < 0.001) and the social (beta = 0.30, p < 0.01) dimensions of burden. Unexpectedly, COVID-19 was not associated with caregiver burden and depressive symptoms. Conclusion(s): Caregivers of onco-hematologic patients may experience depression due to the burden of caregiving, which is related mostly to the patients' disease rather than extraordinary, even dramatic events such as the pandemic. Psychological interventions are needed for them.Copyright © 2023

Effect of the COVID-19 Pandemic on the Self-Perceived Change of Caregivers' Burden in Providing Care for People With Dementia.

Objectives: To explore how the COVID-19 pandemic affects caregiver (CG) burden, the quality of care provided to people with dementia (PwD) and their perceived changes between before and during the pandemic. Methods: A cross-sectional study surveyed primary CGs about burden and self-perceived change in multidimensional domains and compared these before and during the pandemic. Results: About 135 primary CGs of PwD were enrolled at Siriraj Hospital's Geriatric Clinic in Thailand and assessed using various online platforms. About 13.8% of CGs had a "mild to moderate" burden. The NPI-Q score and level of functional capacity of the PwD declined during the COVID-19 pandemic (p-value .001 and .001, respectively). The CG-associated factors that related to a higher CG burden were younger age (mean age of 54.2 years old), female (76.3%), and high educational level (80.7%). Conflict between CG and PwD was associated with an increase in CG burden (p-value .004; 95% CI [1.19, 6.12]). Regarding the COVID-19-related factors, there was no association between CG burden and the PwD's characteristics or COVID-19-related concerns. Conclusions: The COVID-19 pandemic was associated with a higher CG burden. Identifying the related factors in an unusual situation may help reduce the CG burden and improve the care of PwD.

Assessment of psychological distress and quality of life of family caregivers caring for patients with chronic diseases at home.

Introduction: Caring for the chronically ill at home is a particularly demanding process that can place a great burden on the caregiver. International and Greek studies underline and confirm this problem. In addition, family caregivers are not supported by the health systems of the different countries, especially in Greece, where the system relies mainly on the family to care for these patients, which is even more challenging during the Covid-19 pandemic. Aim: The aim of this study is to evaluate the psychological burden of family caregivers of the chronically ill and the outcomes of care for these individuals. It also aims to assess the intensity of burden and changes in quality of life of family caregivers by demographic characteristics. Methods: The sample of the study was a random sample and consisted of 102 family caregivers of chronically ill patients registered in home care of "Metaxa" hospital. The scales (BAKAS/BCOS) and (HADS) were used for data collection. SPSS 25 statistical package was used for statistical analysis of the results. Results: The results of the study, calculated with the BCOS scale, show a low burden (-0.93) of family caregivers, patients with chronic diseases and moderate depression and anxiety. The results of the analysis associate the intensity of family caregiver burden with increased levels of anxiety and depression. The factors that affect burden are gender, with women having higher burden, living with the patient, and low education level. According to the HADS anxiety scale, family caregivers had an average score of 11, indicating a moderate level of anxiety, and for depression, the average score was 10.4, also indicating a moderate level of depression. The results indicate that the state needs to support family caregivers and take immediate action to create structures and implement actions to help families continue in their difficult roles in a pain-free manner.

Vaccine uptake in caregivers family members and patients with dementia and relationship with severity of dementia and caregiver burden: a cross-sectional study.

We cross sectionally evaluated COVID-19 and seasonal flu vaccination rates among 94 dyads consisting of informal caregiver family member and non-institutionalized patient with dementia observed in family-medicine practice in Zagreb, Croatia. COVID-19 vaccination rates in caregivers (78.7%) and patients with dementia (82.9%) were significantly higher than in general population. Caregiver and patient COVID-19 vaccination status (CVS) did not correlate. Among caregivers, seasonal flu vaccination (P = 0.004) but no other investigated factors related to caregiving or dementia severity showed significant association with CVS. Among patients with dementia, CVS was significantly associated with lower number of caregiver hours dedicated per week (P = 0.017), higher caregiver SF-36 role emotional HRQoL (P = 0.017), younger patient age (P = 0.027), higher MMSE (P = 0.030), higher Barthel index (P = 0.006), absence of neuropsychiatric symptoms of agitation and aggression (P = 0.031), lower overall caregiver burden (P = 0.034), lower burden of personal strain (P = 0.023) and lower burden of frustration (P = 0.016). Caregiving and severity of dementia-related factors significantly affect patient, but not caregiver CVS.

The correlation between caregiver burden with depression and quality of life among informal caregivers of hemodialysis and thalassemia patients during the COVID-19 pandemic: a cross-sectional study.

BACKGROUND: Lifelong provision of care to chronically ill patients increase the risk of physical and mental diseases in informal caregivers and adversely affects their quality of life. The present study examined the correlation between caregiver burden, depression, and quality of life among the informal caregivers of thalassemia and hemodialysis patients during the COVID-19 pandemic in southeastern Iran. METHODS: This cross-sectional correlational study used convenience sampling to select 200 informal caregivers involved in providing direct care for patients undergoing hemodialysis (n = 70) and patients with thalassemia (130) for at least 6 months. A demographic questionnaire, Beck's Depression Inventory (BDI), the Quality-Of-Life Questionnaire (SF-36), and the Zarit Burden Interview were used to collect data in 2021. The data were analyzed with SPSS software (version 19) using frequency, percentage, independent samples t-test, ANOVA, and multivariate regression analysis. RESULTS: Most of the informal caregivers of the thalassemia and hemodialysis patients (58% and 43%) reported moderate levels of caregiver burden. There were significant correlations between the caregiver burden and depression (P < 0.0001) and between the caregiver burden and the quality of life (P < 0.009). The level of depression in informal caregivers of patients undergoing hemodialysis was higher than that of the informal caregivers of patients with thalassemia, but the quality of life in the informal caregivers of the patient's undergoing hemodialysis was higher than that of the informal caregivers of the patients with thalassemia. CONCLUSION: Considering the significant correlations between caregiver burden, depression, and quality of life in this study, healthcare providers are recommended to develop educational and supportive interventions to meet informal caregivers' needs, mitigate their emotional distress, fears, and concerns, and prevent caregiver burden in times of greater uncertainty.

Caring Through COVID Findings from a Quality Improvement Project

This multisite quality improvement (QI) project reports on a psychotherapy group for family care partners of persons living with neurodegenerative conditions. Following the plan-do-study-act model, a team of geropsychologists iteratively developed, implemented, and refined the 8-week "Caring Through COVID" psychotherapy group across five cycles from January 2021 to April 2022. Participants were 21 spouses or adult children of persons living with neurodegenerative conditions. Across two clinics, participants evidenced moderate improvements in caregiver burden (d = .59), self-efficacy for caregiving (d = -.64), and self-efficacy for emotion regulation (d = -.60). The group was perceived positively by participants. This QI project demonstrates the real-world implementation of a psychotherapy group developed during the COVID-19 pandemic and refined to remain ongoing.

The impact of a pilot telehealth coaching intervention to improve caregiver stress and well-being and to increase dietary protein intake of caregivers and their family members with dementia - Interrupted by COVID-19.

The prevalence of dementia is growing as the population and longevity increase. Caregivers of adults with dementia report stress and fatigue and often neglect their health. They also indicate the need for information to address health-related issues, including nutritional problems, of their family members with dementia (FMWD). This study examined the impact of coaching to improve family caregiver (FCG) stress and well-being and to increase the protein intake of both FCGs and their FMWD. All participants received nutrition education including a protein prescription (1.2 g/kg body weight/day) and FCGs received stress-reduction materials. Coached-group randomized participants also received weekly diet coaching and stress-reduction coaching. At baseline and 8 weeks, anthropometrics, a mini-nutritional assessment questionnaire, and diet (protein intake) were assessed in FCGs and FMWD; well-being, fatigue and strain were assessed in FCGs. Repeated two words measures analysis of variance and Fisher's exact tests examined within group and intervention effects. Twenty-five FCGs (13 coached group, 12 not-coached group) and 23 FMWD (12 coached group, 11 not-coached group) completed the study. No significant differences were found between coached and not-coached FCGs and FMWD at baseline. After 8- weeks, FCGs' protein intake significantly increased from 1.00 ± 0.17 to 1.35 ± 0.23 g/kg/body weight in the coached group and from 0.91 ± 0.19 to 1.01 ± 0.33 g/kg/body weight in the not-coached group; there was also an intervention effect (p=.01, η2 = .24). The percentage of FCGs with baseline protein intake less than prescription guidelines and with an end-of-study protein intake meeting/exceeding the prescription significantly differed, with 60% of coached FCGs versus 10% of not coached FCGs meeting the prescription. No intervention effects were shown for protein intake in FMWD or for well-being, fatigue or strain among FCGs. Diet coaching with nutrition education successfully assisted FCGs with improving their protein intake versus nutrition education alone.

Understanding the support needs of parents of children with obsessive-compulsive disorder: a qualitative descriptive study in the UK.

INTRODUCTION: Caring for a child with obsessive-compulsive disorder (OCD) can be extremely difficult, yet evidence-based support strategies for parents/carers are limited. A detailed understanding of parent support needs is an important first step in intervention development and qualitative research with this focus is currently lacking. In this study, the viewpoints of parents and professionals were used to understand support needs and preferences when caring for a child with OCD. This qualitative descriptive study formed part of a wider UK-based project aimed at developing better support for parents of children with OCD. METHOD: Individual semi-structured interviews (and an optional one-week journal) with a purposive sample of parents of children and young people (CYP) with OCD, aged 8-18, and focus groups (or individual interviews where preferred) with a purposive sample of professionals supporting CYP with OCD. Data comprised transcripts of audio-recorded interviews and focus groups, and text from journals. Analysis was informed by the Framework approach involving inductive and deductive coding, supported by NVivo 12.0 software. Co-production methods were adopted throughout the research process, including the involvement of a parent co-researcher and charity collaborators. RESULTS: Interviews were undertaken with 20 parents, of which 16 completed a journal. Twenty-five professionals took part in a focus group or interview. Five key themes relating to parent support challenges and support needs/preferences were identified (1) Coping with the impact of OCD; (2) Getting help for my child; (3) Understanding parents' role; (4) Making sense of OCD; (5) Joined-up care. CONCLUSION: Parents caring for children with OCD have clear caregiver support needs which are currently not being met. Through triangulation of parent and professional accounts, this study has identified parent support challenges (e.g., emotional impact of OCD, visibility of caring role, misunderstanding about OCD) and support needs/ preferences (e.g., headspace/respite, compassion/sensitivity, guidance on accommodation) to lay the vital foundations for the development of effective parent support interventions. There is now an urgent need to develop and test an intervention to support parents in their caregiving role, with the aim of preventing and/or reducing their levels of burden and distress and ultimately, improving their quality of life.

Survey on the Impact of the COVID-19 Pandemic on Patients with Parkinson's Disease and Their Caregivers in Japan.

Objective: The coronavirus disease 2019 (COVID-19) pandemic changed the lives of patients with Parkinson's disease (PD) and their caregivers. This study aimed to investigate changes in patient behavior and PD symptoms and their effect on caregiver burden resulting from the COVID-19 pandemic in Japan. Methods: This nationwide, observational, cross-sectional survey included patients with self-reported PD and caregivers (members of the Japan Parkinson's Disease Association). The primary objective was to evaluate changes in behaviors, self-assessed PD symptoms, and caregiver burden from pre-COVID-19 (February 2020) to post-national state of emergency (August 2020 and February 2021). Results: Responses from 1883 patients and 1382 caregivers from 7610 distributed surveys were analyzed. Mean (standard deviation) age of patients and caregivers was 71.6 (8.2) and 68.5 (11.4) years, respectively; 41.6% of patients had a Hoehn and Yahr (HY) scale of 3. Patients (>40.0%) reported decreased frequency of going out. Most patients (>70.0%) reported no change in treatment visit frequency, voluntary training, or rehabilitation and nursing care insurance services. Symptoms worsened for approximately 7-30% of patients; the proportion with HY scale 4-5 increased from pre-COVID-19 (25.2%) to February 2021 (40.1%). Aggravated symptoms included bradykinesia, walking, gait speed, depressed mood, fatigue, and apathy. Caregivers' burden increased because of patients' worsened symptoms and reduced time going out. Conclusion: Control measures during infectious disease epidemics should consider that patients' symptoms may worsen; therefore, patient and caregiver support is needed to reduce burden of care.

Impact of advanced Parkinson's disease on caregivers: an international real-world study.

BACKGROUND: Caring for a partner or family member with Parkinson's disease (PD) negatively affects the caregiver's own physical and emotional well-being, especially those caring for people with advanced PD (APD). This study was designed to examine the impact of APD on caregiver perceived burden, quality of life (QoL), and health status. METHODS: Dyads of people with PD and their primary caregivers were identified from the Adelphi Parkinson's Disease Specific Program (DSP™) using real-world data from the United States, Japan and five European countries. Questionnaires were used to capture measures of clinical burden (people with PD) and caregiver burden (caregivers). RESULTS: Data from 721 patient-caregiver dyads in seven countries were captured. Caregivers had a mean age 62.6 years, 71.6% were female, and 70.4% were a spouse. Caregivers for people with APD had a greater perceived burden, were more likely to take medication and had lower caregiver treatment satisfaction than those caring for people with early or intermediate PD; similar findings were observed for caregivers of people with intermediate versus early PD. Caregivers for people with intermediate PD were also less likely to be employed than those with early PD (25.3% vs 42.4%) and spent more time caring (6.6 vs 3.2 h/day). CONCLUSIONS: This real-world study demonstrates that caregivers of people with APD experience a greater burden than those caring for people with early PD. This highlights the importance of including caregiver-centric measures in future studies, and emphasizes the need for implementing treatments that reduce caregiver burden in APD. TRIAL REGISTRATION: N/A.

Existential Correlates of Psychosocial Service Use Among GBM Caregivers in the COVID-19 Pandemic

Background/Purpose: Patients with Glioblastoma Multiforme (GBM) have complex care needs and poor prognoses, which places their caregivers at risk for existential distress and psychopathology. Many caregivers seek support in coping with this role;the COVID-19 pandemic further exacerbated caregiver distress and the demand for caregiver support services. The purpose of this study was to examine how psychosocial service use and barriers to use relate to existential distress, anxiety, and depression. Method(s): This study was part of a RCT examining Meaning-Centered Psychotherapy among 60 distressed caregivers of patients with GBM. At baseline, caregivers reported use of psychosocial services and barriers to seeking those services. Additionally, participants completed measures of meaning, existential distress, spiritual wellbeing, anxiety, depression, and caregiver burden. We descriptively analyzed use of healthcare services, prevalence and intensity of barriers to seeking support, and investigated their correlations with outcome measures. Result(s): The most common service endorsed was psychotropic medication use, with 29.3% of caregivers reporting using medications to cope, and it was the only service associated with significantly lower personal meaning and spiritual well-being, and higher anxiety. Of the barriers reported, difficulty finding support (46.4% endorsed), lack of time for support (35.1% endorsed), and caregiving responsibilities (33.9% endorsed) were the most common. Caregivers who endorsed difficulty finding support as a barrier had significantly higher levels of anxiety and depressive symptoms, lack of family support, and impact on schedule. Further, caregivers who reported higher perceived intensity of barriers had elevated levels of existential vacuum, anxiety, and depression. Conclusions and Implications: GBM caregivers often rely on psychotropic medication as a stopgap to manage distress, which may worsen existential distress and anxiety, likely because resources like talk therapy and support groups are inaccessible. These results underscore the need for expanded caregiver support services, and how barriers to these services may exacerbate existential distress and discourage caregivers.

Potential mechanisms by which cash transfer programmes could improve the mental health and life chances of young people: A conceptual framework and lines of enquiry for research and policy

Mental health is inextricably linked to both poverty and future life chances such as education, skills, labour market attachment and social function. Poverty can lead to poorer mental health, which reduces opportunities and increases the risk of lifetime poverty. Cash transfer programmes are one of the most common strategies to reduce poverty and now reach substantial proportions of populations living in low- and middle-income countries. Because of their rapid expansion in response to the COVID-19 pandemic, they have recently gained even more importance. Recently, there have been suggestions that these cash transfers might improve youth mental health, disrupting the cycle of disadvantage at a critical period of life. Here, we present a conceptual framework describing potential mechanisms by which cash transfer programmes could improve the mental health and life chances of young people. Furthermore, we explore how theories from behavioural economics and cognitive psychology could be used to more specifically target these mechanisms and optimise the impact of cash transfers on youth mental health and life chances. Based on this, we identify several lines of enquiry and action for future research and policy.Copyright © The Author(s), 2023. Published by Cambridge University Press.

Shared decision-making and the caregiver experience in tuberous sclerosis complex: results from a UK survey.

BACKGROUND: Tuberous sclerosis complex (TSC) is a rare genetic condition commonly accompanied by neurological and neuropsychological disorders, resulting in a high burden of illness for individuals and a substantial impact on their caregivers. Due to the diversity and complexity of clinical manifestations, patients with TSC need aligned multidisciplinary healthcare services starting in childhood through to adulthood. However, patients and caregivers are sometimes dissatisfied with the care provided, for which one of the most common reasons is a lack of involvement in clinical decision-making. Shared decision-making, whereby clinicians make clinical management decisions together with patients and their caregivers, is advocated for in the management of epilepsy, but evidence of its benefit in managing TSC is currently lacking. In this cross-sectional, UK-based analysis we used an online survey to capture the experiences of primary caregivers for individuals with TSC, including the impact on work productivity, clinical shared decision-making, satisfaction with care, and the impact of the coronavirus disease 2019 (COVID-19) pandemic. RESULTS: In total, 73 eligible caregivers provided consent (analysis set), with 14 completing the survey partially and 59 completing the full survey. Many caregivers (72%) reported receiving recommendations about new treatments from their doctor and discussing the treatment together, with a high proportion (89%) preferring that treatment was initiated at a low dose. Most caregivers (69%) were satisfied or extremely satisfied with pediatric TSC healthcare services, but only 25% were satisfied or extremely satisfied with the transition to adult TSC healthcare services. Several (n = 30) caregivers specified the impact of caring on their work productivity and career in optional open-ended survey responses. Finally, 80% of caregivers indicated that the COVID-19 pandemic had a "large" or "very large" impact on their caring activities, negatively affecting the emotional wellbeing and behavior of individuals with TSC, and caregivers' ability to work and arrange medical appointments. CONCLUSIONS: Caregivers largely feel involved in treatment decisions, and the majority were satisfied with healthcare services for children with TSC. However, many highlighted the need for an improved transition from pediatric to adult healthcare services. The survey also showed that COVID-19 has considerably affected caregivers and individuals with TSC.

The Impact of the COVID-19 Pandemic on Informal Caregivers of People With Parkinson's Disease Residing in the UK: A Qualitative Study.

Informal caregivers can experience various demands when providing care and support for People with Parkinson's disease (PwP) in their own homes. The outbreak of SARS-CoV-2 and public health strategies employed to mitigate the spread of COVID-19 have presented challenges to the general populace on a global basis. The present study used a qualitative research design to explore how the COVID-19 pandemic has impacted informal caregivers in their role of providing care for PwP in their own homes. A series of 1:1 semi-structured interviews were conducted with 11 informal caregivers of PwP (M age = 72.64 years, SD = 8.94 years). A thematic analysis indicated that 1) vulnerabilities to COVID-19, 2) home maintenance & activities of daily living and 3) engagement with healthcare services were 3 themes that provided indications on how the COVID-19 pandemic impacted informal caregivers of PwP. The present study provides illustrations of how being an informal caregiver of PwP and being identified as high risk to COVID-19 can present challenges to the process of caring for loved ones who are also vulnerable to SARS-CoV-2. The results of the present study highlights the necessity to develop strategies to ensure that informal caregivers have the necessary resources to provide care for PwP in their homes and also maintain their own well-being in the post COVID-19 era.

Caring for a person with dementia during the COVID-19 pandemic: a qualitative study with family care-givers

The aim of this study was to explore the experience of family care-givers of people with dementia during the COVID-19 pandemic in the Veneto region of Italy to understand how and to what extent the emergency has affected care-givers' lives and care routines. Twenty adult children of an ill person were interviewed via phone and video call, in adherence with the restrictions against COVID-19. Thematic analysis showed five main themes: the care-giver's experience, the care recipient's experience, relationships with care recipients, changes in the care routine and resources. Results pointed out that the time needed in the care routine and everyday activities increased during the pandemic, together with the need to find alternatives to physical activity at home. Depending on one's personal experience of COVID-19 and approach to preventive rules, the availability of resources, and formal and informal support, three main approaches to care were identified: apprehensive, mindful and fatalistic ones. The pandemic amplified the differences among these already-existing approaches to care as well as the typical challenges and difficulties experienced by family care-givers, and it resulted in an increased burden connected to practical difficulties, emotional stress and difficulties in reaching for help. These results underline the importance of strengthening the external support network for older people to help family care-givers, especially during emergencies.

Journaling among home care workers during the COVID-19 pandemic: A promising method for qualitative data collection

Qualitative methods that capture individual lived experiences throughout rapidly changing circumstances are particularly important during public health emergencies. The COVID-19 pandemic has put home care workers at risk as they provide vital services in homes to individuals with chronic conditions or disabilities. Using a 6-week journaling process in which we enrolled participants at different points, we sought to examine experiences of home care workers (n = 47) in the United States in New York and Michigan during April–July 2020 of the COVID-19 pandemic. Our methods for data collection and analysis were guided by a general qualitative approach as we aimed to examine the weekly perspectives and lived experiences of home care workers. We asked individuals to respond to our journaling prompts weekly to capture their reflections in "real time." To better understand home care workers' perspectives on journaling and the broader external context in which they provided care, we triangulated our data with interviews with home care workers (n = 19) and home health agency representatives (n = 9). We explored the feasibility of a rolling journaling process during an unprecedented public health emergency, characterized by rapid changes and uncertainty in day-to-day life, and reflect on lessons learned to guide future research on journaling for data collection, particularly for marginalized workers during public health crises, when events are evolving rapidly.