What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: A qualitative systematic review.

PURPOSE: To critically synthesise qualitative research to understand experiences of supportive care in people affected by brain cancer and their informal caregivers. METHODS: A qualitative systematic review was conducted according to the Joanna Briggs methodology and has been reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Guidelines. Electronic databases were searched by an expert systematic review librarian for all qualitative studies irrespective of research design. All publications were double screened by two reviewers using a pre-determined exclusion and inclusion criteria. The review was managed using Covidence systematic review software. Methodological quality assessment and data extraction were performed. Qualitative findings accompanied by illustrative quotes from included studies were extracted and grouped into categories, which created the overall synthesised findings. RESULTS: A total of 33 studies were included which represented a total sample of 671 participants inclusive of 303 patients and 368 informal caregivers. There was a total of 220 individual findings included in this review, which were synthesised into two findings (1) caregivers and patients perceived supports which would have been helpful and (2) caregiver and patient experiences of unmet supportive care needs. CONCLUSION: This review highlighted the suffering and distress caused by brain cancer and associated treatments. Both patients and their informal caregivers experienced disconnect from themselves in renegotiating roles, and a profound sense of loneliness as the physical deterioration of the disease progressed. Both patients and informal caregivers reported similar unmet needs within the current service provision for brain cancer. However, what is apparent is that current cancer services are provided solely for patients, with little or no consideration to the support needs of both the patient and their informal caregiver. Service re-design is needed to improve care coordination with individualised informational support, implementation of holistic needs assessments for both the patients and their caregivers, better community support provision, improved opportunities for emotional care with early referral for palliative care services. IMPLICATIONS FOR CANCER SURVIVORS: It is recommended that members of the multidisciplinary brain cancer team reflect on these findings to target holistic needs assessments and develop shared self-management care plans for both the patient and the informal caregiver.

Balancing Caregiver Resources Provided by Michigan's Area Agencies on Aging.

Timely linkages are necessary for people with dementia and other disabling conditions to reduce caregiver burnout, prevent unnecessary hospitalization, or placement in alternate care settings. To identify needs, the Caregiver Resource Collaborative conducted a needs assessment of Michigan's sixteen area agencies on aging (AAA). Responses by the sixteen AAAs to an online questionnaire provided a point-in-time picture of current caregiver assessment and services conducted by AAAs. Fifteen AAAs responded there would definitely or probably be an increase in the number of caregivers. Fifteen responded that they purchase or contract out respite care services. Fourteen stated that they provide some type of direct caregiving resources. Twelve utilize staff to develop and monitor care plans. While some provide training, none of the AAAs provides supportive services. The AAAs anticipate rapidly increasing needs for caregiver supports and services. While each provides different services, demand will continue to grow as the older adult population increases.

Therapists' perceptions and acceptability of providing internet-delivered guided self-help acceptance and commitment therapy (ACT) for family carers of people with dementia (iACT4CARERS): a qualitative study

This study aimed to explore therapists' perceptions and acceptability of providing internet-delivered, therapist-guided, self-help acceptance and commitment therapy (ACT) for family carers of people with dementia (iACT4CARERS). To achieve this, a qualitative approach with semi-structured interviews was employed with eight novice therapists recruited from primary and secondary care services taking part in a feasibility study of iACT4CARERS. The interviews were audio-recorded, transcribed, and analysed using thematic analysis. Four over-arching themes were identified: (1) positive attitudes towards the intervention, (2) therapists' workload, (3) therapists' confidence to perform their role, and (4) connecting with family carers in a virtual context. Theme 1 included seeing their involvement as an opportunity for personal growth and perceiving benefits to the family carers, which contributed to greater acceptability. Theme 2 reflected that while workload and the user-friendliness of the online platform were highly acceptable among the therapists, there were also time-consuming cases that increased therapists' burden. Theme 3 revealed that practical resources provided during the training, continued supervision, and opportunities to learn from other therapists, increased therapist confidence and facilitated greater acceptability. Finally, Theme 4 highlighted that improving the connection between therapists and carers was critical in a virtual context and strategies to improve the therapist–carer relationship were recommended. The implementation of iACT4CARERS was largely acceptable for the therapists involved in the trial. Ways to strengthen the therapeutic relationship in the virtual context and practical strategies to deal with common problems may enhance therapist experience and delivery in a full-scale effectiveness trial.Key learning aims(1) To understand which factors facilitated therapists' positive perceptions and acceptability of providing internet-delivered guided self-help ACT (iACT4CARERS).(2) To understand what challenges acted as barriers to therapists' positive perceptions and acceptability of providing iACT4CARERS.(3) To learn what aspects of the training and the intervention can be refined to improve the acceptability to therapists in trials involving internet-delivered guided self-help interventions for family carers.

Digital technologies as sources of information for patients and caregivers during COVID-19 pandemic: A cross-sectional survey.

Background: The emergence of the coronavirus disease 2019 (COVID-19) pandemic had a significant impact on the global economy, society, and healthcare systems. Little is known about the role of digital technologies as sources of information for patients and informal caregivers during COVID-19 pandemic. Considering the substantial information needs experienced by informal caregivers during the COVID-19 pandemic, further understanding of caregivers' use of digital technologies to access COVID-19 information is needed. Objective: The aim of this study is to identify associations between informal caregiver's characteristics and the use of digital technologies to seek COVID-19 information in two countries with two different care systems: Italy (family based care system) and Sweden (universal care system) in order to determine whether factors such as demographics, socioeconomic resources, and the caregiving context may influence caregivers' use of these technologies during the pandemic. Methods: A sample of 500 respondents participated in a cross-sectional survey by completing the online questionnaire. Respondents were recruited by the Italian National Institute of Health and Science on Ageing and the Swedish Family Care Competence Centre. Logistic regression model was used to investigate the association between the use of digital technologies to seek COVID-19 information and the independent variables. Results: The multivariate analysis for the Italian sample indicated that female caregivers had two times the odds of use of digital technologies compared with males (p = 0.010, 95% CI 1.191 to 3.701). The odds of use were 2.3 times higher when the level of dependency of the care recipient on the caregiver is low compared with a high level of dependency (p = 0.029, 95% CI 1.090 to 4.858). In the Swedish group, respondents who spent less than 10 h per week providing care were almost three times more likely to use digital technologies as opposed to those who dedicate more than 40 h per week to care provision (p = 0.039, 95% CI 0.133 to 0.951). Caregivers in the age group 40-59 years were 2.7 times more likely to use digital technologies in comparison with those of the age group 60 + years (p = 0.033, 95% CI 1.083 to 6.494). Perceiving a lack of awareness about available online resources that support caregivers in their role during the pandemic was the top challenge mentioned by the participants in both countries in using digital technologies to access information during the pandemic. The study revealed that the most used sources of online COVID-19 information for Italian caregivers were social media platforms and mobile apps, while in the case of the Swedish caregivers, online portals and apps published by state, regional, or municipal authorities were the most used sources. Italian participants in the study perceived less reliability in the online COVID-19 information than their Swedish counterparts. Conclusions: Digital technologies are used by patients and their caregivers to seek information relevant to the pandemic. Because digital technologies are becoming a popular and accessible information source, medical professionals should consider the differences between caregivers' age groups when delivering information online. Strategies aiming to address the spread of misinformation on social media and online platforms are needed to fight infodemic. Governments should consider innovative policies that promote formal certification of online platforms and apps on the basis of their reliability. As digitalization of healthcare systems continues, efforts are needed to ensure different populations of patients and their caregivers are supported to obtain timely accurate information that meets their needs. An inclusive approach in the digitalization of healthcare systems may reduce inequalities in access to technology. Consequently, technology itself may over time become a tool in reducing such inequalities by empowering underserved or underrepresented populations.

Perspectives of caregivers of older adults with acute myeloid leukemia during initial hypomethylating agents and venetoclax chemotherapy.

BACKGROUND: Older adults with AML commonly receive a hypomethylating agent (HMA) as first-line therapy. The addition of venetoclax (VEN) to HMAs has been shown to improve remission rates and overall survival. The use of combination therapy (HMA + VEN) requires frequent follow-up, results in longer infusion times, and likely increases caregiver responsibility at home. We describe experiences of informal caregivers (family/friends) providing care to older adults with AML receiving HMA + VEN. METHODS: Fourteen caregivers of older adults with AML receiving HMA + VEN (September 2020 to September 2021) were recruited as part of a control group of an ongoing NIH-funded clinical trial. Semi-structured interviews were conducted to gain initial insight into caregiver experiences at the start of HMA + VEN treatment. Two researchers analyzed the data using thematic content analysis. Data saturation occurred when no new themes were found in subsequent interviews, but all interviews were coded and synthesized. RESULTS: Of the 14 caregivers interviewed, the majority were spouses (n = 10), female (n = 13), and aged 45 to 83 (median age 65). We identified five themes: (1) the impact of an AML diagnosis in older adulthood, (2) care recipient condition changes, (3) perspectives of caregiving roles and tasks, (4) factors influencing caregiving experiences, and (5) support system roles. CONCLUSIONS AND IMPLICATIONS: Caregivers for older adults with AML report a range of experiences navigating health systems, caregiving responsibilities, and resource needs. The risk for caregiver burden and unmet needs should be addressed to improve caregivers' abilities to provide care.

[The situation of informal caregivers of working age in the COVID-19 pandemic-results of an online survey in Germany]. / Die Situation pflegender Angehöriger im erwerbsfähigen Alter in der COVID-19-Pandemie ­ Ergebnisse einer Onlinebefragung in Deutschland.

BACKGROUND: The consequences of the COVID-19 pandemic have posed major challenges to different groups. One of these are informal caregivers. This study investigates the changes the pandemic has caused for informal caregivers and the extent to which quality of life and burden of care have changed for specific subgroups. METHODS: Data for this cross-sectional study was gathered in the summer of 2020 in a convenient sample of informal caregivers (< 67 years of age, N = 1143). In addition to sociodemographic data, information on the care situation, compatibility of care and work, as well as stress and quality of life was collected in an online survey. The analysis of care situations and compatibility of care and work is done descriptively. Logistic regression models are used for a subgroup analysis of quality of life and care burden. RESULTS: The care situation has changed for 54.7% of participants and has become more time consuming. For 70.8% of respondents, the COVID-19 pandemic has made it even more difficult to balance care-giving and work. However, most respondents were satisfied with their employers' pandemic management (65.9%). A sharp decline in the quality of life and an increase in the burden of care for informal caregivers was ascertained. Both developments are stronger for young and female caregivers and for those caring for people with a greater need of support. DISCUSSION: The results indicate that living situations worsened for a substantial proportion of informal caregivers during the COVID-19 pandemic. Policymakers should recognize additional challenges that informal caregivers have faced since the outbreak of the COVID-19 pandemic and how they vary by subgroups. It is important to include home-based informal care as well as other care settings in future pandemic concepts.

Using Photovoice as a Method for Capturing the Lived Experiences of Caregivers During COVID-19: A Methodological Insight.

Although the extant literature identifies photovoice as one of the most innovative and creative research methods that encourage reflection and introspection, few studies have described the use of photovoice with family/informal caregivers. This paper discusses the implementation of photovoice as a novel approach in exploring the experiences of informal caregivers (n = 10) of older adults in long-term care homes during the COVID-19 pandemic. The article describes the four stages of the photovoice process undertaken: (1) preparation; (2) pre-focus group meeting; (3) taking photographs; and (4) reflection and implementation insights, to researchers. The different stages in the research process inspired several key learnings, including the use of co-learning tools, the valuable combination of photographic images and words to provide rich description of participants' perspectives, and creative ways to engage and support caregivers in sharing their stories. This paper also addresses some practical challenges of using this methodology with informal caregivers and explore issues surrounding research ethics and photographs. Knowledge gained from this case example provides strong support for the use of photovoice as a creative approach to better illuminate and understand the experiences of caregivers and can inform the design of future virtual studies.

Exploring the Need for Mobile Application in Stroke Management by Informal Caregivers: A Qualitative Study.

BACKGROUND: Mobile health (mHealth) has been considered as a prominent concept in digital health and is widely used and easily accessible. Periodic follow-up visits, previously planned procedures, and rehabilitation services for stroke survivors have been cut down during the recent COVID-19 pandemic. Therefore, in this qualitative study we aimed to explore the need for a mobile application in stroke management by informal caregivers. METHODS: A phenomenological qualitative study was conducted from November 2020 to June 2021. Thirteen respondents were recruited from two public rehabilitation centers in Kota Bharu, Kelantan, Malaysia. In-depth interviews were conducted. A comprehensive representation of perspectives from the respondents was achieved through purposive sampling. The interviews were conducted in the Kelantanese dialect, recorded, transcribed, and analyzed by using thematic analysis. RESULTS: Thirteen participants were involved in the interviews. All of them agreed with the need for a mobile application in stroke management. They believed the future stroke application will help them to seek information, continuous stroke home care, and help in the welfare of caregivers and stroke patients. CONCLUSIONS: The current study revealed two themes with respective subthemes that were identified, namely, self-seeking for information and reasons for using a stroke mobile application in the future. This application helps in reducing healthcare costs, enhancing the rehabilitation process, facilitating patient engagement in decision making, and the continuous monitoring of patient health.

Does Reality Overcome the Expected? Survey on Informal Caregivers' Profile: A Nurse-Led Study in Times of COVID-19.

The increasing overload of chronic conditions raises challenges for the health system. Informal caregivers have a major role in ensuring the quality of life of the cared-for person, despite the reported lack of working resources which can lead to unmet needs. This article reports on the first part of a nurse-led research project entitled ''Informal caregiver' profiles in Lisbon county: a health community approach.' We aimed to support decision-making by developing an informal caregiver profile to promote tailored interventions. A survey addressing the dyad was developed and submitted to a convenient, network-based, stratified sample of carers aged 18 years or above. More than thirty community partners supported the identification of caregivers. Data were submitted to univariate descriptive analysis. A profile of the cared-for person and the informal caregiver was uncovered by identifying 639 caregivers, of whom the majority lived with the cared-for person. Only four percent planned the transition to a caregiver role, and no more than 10% had access to support programs. Approximately half of the respondents found that COVID-19 negatively impacted their performance in the caregiver role. Developing a local and tailored strategy with collaboration between healthcare professionals, academics, and community partners is key to ensuring that meaningful support is provided to caregivers.

Growing as a Caregiver: Delivering Online Support Program for Informal Caregivers of Dementia Patients During the COVID-19 Pandemic

The outbreak of the COVID-19 has brought unprecedented challenges for people’s daily life, including family caregivers of older adults with dementia. In addition to the multiple difficulties for daily life and health management, in-person services and support programs for cognitive impairment patients and their caregivers have been called a halt due to frequent quarantine requirements. This pilot study examined a Tele-Savvy Caregiver Program (TSCP) provided by six pairs of undergraduate social work students for 36 informal caregivers of dementia patients. In-depth interviews were used to identify the outcome and feedback from both service recipients and service providers of the online intervention program. Results showed that the program significantly reduced the caregivers’ emotional burden by increasing their disease literacy, reflecting caregiver roles, obtaining stress relief techniques, gaining strengths perspective, establishing social support networks, and reducing stigma. The online intervention experience also improved the social work students as service providers’ disease literacy, practice skills, critical thinking, self-esteem and professional confidence, and sense of social responsibility. This study illustrated that social service and support could be delivered online for caregivers of dementia patients during this challenging pandemic time. Meanwhile, the online intervention program could contribute to a meaningful learning experiences for undergraduate social work students. Therefore, the expanding of this online intervention program in larger population might benefit more needy groups. © 2022, The Author(s), under exclusive license to Springer Nature Switzerland AG.

Factors Associated with Increased Caregiver Burden of Informal Caregivers during the COVID-19 Pandemic in Japan.

This study's objective was to explore the association between various factors and the increased caregiver burden of informal caregivers during the COVID-19 pandemic. On February, 2021, 700 informal caregivers completed an online survey. We assessed the change in caregiver burden during the COVID-19 pandemic. Among all caregiver participants, 287 (41.0%) complained of an increased caregiver burden due to the COVID-19 pandemic. The factors associated with increased caregiver burden were depressive symptoms in caregivers [odds ratio (OR), 2.20; 95% confidence interval (CI), 1.50-3.23], dementia (OR, 2.48; 95%CI, 1.07-5.73) and low Barthel Index scores (OR, 2.01; 95%CI, 1.39-2.90) in care receivers, care days (OR, 1.09; 95%CI, 1.01-1.17) and times (OR, 1.06; 95%CI, 1.01-1.10), and use of home care service (OR, 1.46; 95%CI, 1.01-2.10) and visiting care service (OR, 1.71; 95%CI, 1.20-2.45). These findings suggest we need to pay attention to the physical and mental health of both the care receivers and caregivers.

Relatives' experiences of the hospitalisation of older people with COVID-19: A qualitative interview study.

BACKGROUND: During the COVID-19 pandemic, visitors were restricted from hospitals, separating them from hospitalised friends and family to reduce the infection risk. OBJECTIVES: The objective was to explore how relatives of older people acutely admitted to hospital with COVID-19 experienced being a relative, and how they felt about their contact with health care professionals (HCPs) when visitor restrictions prevented their physical presence in the ward. METHOD: This study employed a qualitative design. We used individual qualitative semi-structured interviews and the participants were relatives of acutely admitted older people from three COVID-19 wards in Denmark. A total of 18 relatives participated, 14 female and 4 male, aged between 45 and 83 years. The analysis was guided by Graneheim and Lundman's qualitative content analysis. RESULTS: The analysis derived the following three themes: (1) the importance of trust in a period of uncertainty; (2) the meaning of contact with HCPs, and (3) active but at a distance-a balancing act. The participants' feelings of uncertainty were prominent. The unknown nature of the disease and the unusual situation challenged relatives' trust in HCPs and the health care system. CONCLUSIONS AND RELEVANCE TO PRACTICE: The findings highlight relatives' stress when the possibilities for visiting are restricted and the importance of trust in, and the relationship with HCPs. This study can strengthen HCPs' understanding of relatives' situation when older people are hospitalised during and after the COVID-19 pandemic.

Factors Worsening and Mitigating the Consequences of the COVID-19 Outbreak on the Overall Health of Informal Caregivers of Older People with Long-Term Care Needs Living in Germany and in Italy.

Population ageing and the higher prevalence of multimorbidity in later life are increasing the demand for Long-Term Care (LTC) worldwide; this has been exacerbated by the COVID-19 pandemic. As in Europe and beyond, the bulk of care for frail older people is carried out by informal caregivers. This study aimed at understanding the factors affecting the overall worsening health of informal caregivers of older people with LTC needs living in Germany and Italy during the outbreak. To this purpose, 319 informal caregivers (149 in Germany and 173 in Italy) were surveyed online in 2020-2021. A logistic regression analysis was performed by country, to obtain an adjusted estimate of the risk of worsening of caregivers' health. This risk increased by 42% for German caregivers compared to Italian ones, despite the former receiving more formal services. This may depend on different quality standards of LTC services and caregivers' expectations, and on differing policies concerning migrant care workers (MCWs) during the outbreak, who could not enter Germany and were "trapped" at care recipients' homes in Italy. Results call for in-home care reforms and policies guaranteeing more effective caregiver support, home care services and fairer working condition for MCWs in both countries.

The impact of coronavirus disease 2019 on emotional and behavioral stress of informal family caregivers of individuals with stroke or traumatic brain injury at chronic phase living in a Mediterranean setting.

INTRODUCTION: Even in nonpandemic times, persons with disabilities experience emotional and behavioral disturbances which are distressing for them and for their close persons. We aimed at comparing the levels of stress in emotional and behavioral aspects, before and during coronavirus disease 2019 (COVID-19), as reported by informal family caregivers of individuals with chronic traumatic brain injury (TBI) or stroke living in the community, considering two different stratifications of the recipients of care (cause and injury severity). METHODS: We conducted a STROBE-compliant prospective observational study analyzing informal caregivers of individuals with stroke (IC-STROKE) or traumatic brain injury (IC-TBI). IC-STROKE and IC-TBI were assessed in-person before and during COVID-19 online, using the Head Injury Behavior Scale (HIBS). The HIBS comprises behavioral and emotional subtotals (10 items each) and a total-HIBS. Comparisons were performed using the McNemar's test, Wilcoxon signed-rank test or t-test. Recipients of care were stratified according to their injury severity using the National Institutes of Health Stroke Scale (NIHSS) and the Glasgow Coma Scale (GCS). RESULTS: One hundred twenty-two informal caregivers (62.3% IC-STROKE and 37.7% IC-TBI) were assessed online between June 2020 and April 2021 and compared to their own assessments performed in-person 1.74 ± 0.88 years before the COVID-19 lockdown. IC-STROKE significantly increased their level of stress during COVID-19 in five emotional items (impatience, frequent complaining, often disputes topics, mood change and overly sensitive) and in one behavioral item (overly dependent). IC-TBI stress level only increased in one behavioral item (impulsivity). By injury severity, (i) mild (14.7%) showed no significant differences in emotional and behavioral either total-HIBS (ii) moderate (28.7%) showed significant emotional differences in two items (frequent complaining and mood change) and (iii) severe (56.6%) showed significant differences in emotional (often disputes topics) and behavioral (impulsivity) items. CONCLUSIONS: Our results suggest specific items in which informal caregivers could be supported considering cause or severity of the recipients of care.

The Effects of Severe Acute Respiratory Syndrome Coronavirus 2 on the Reported Mental Health Symptoms of Nonprofessional Carers: An Analysis Across Europe.

OBJECTIVES: This study tries to analyze how the crisis generated by severe acute respiratory syndrome coronavirus 2 has affected the reported mental health symptoms of informal caregivers in different European countries. METHODS: The Survey of Health, Ageing and Retirement in Europe-COVID-19 was used, collecting information from the beginning of June 2020 to August 2020 about individuals' state of health and the care they received. Several probit regression models were used to analyze the differences in the probability of (1) being sad or depressed, (2) being anxious or nervous, (3) having difficulty sleeping, and (4) feeling lonely, between individuals who provided informal care and individuals who did not. Several subanalyses by geographic area, mortality rates due to coronavirus disease 2019 (COVID-19), and long-term care expenditure were also performed. RESULTS: Since the outbreak of COVID-19, informal caregivers have had a higher probability of being sad or depressed of 8 percentage points (p.p.), a 7.1 p.p. higher probability of being anxious or nervous, and a 5.9 p.p. higher probability of having difficulty sleeping than non-caregivers. Informal caregivers in Southern Europe have had an 8 p.p. higher probability of being sad or depressed than non-caregivers. In Eastern Europe, this difference in probability reaches 9.7 p.p. Finally, in countries with higher mortality rates due to COVID-19, there have been greater differences in terms of being sad or depressed between caregivers and non-caregivers, regardless of expenditure on long-term care. CONCLUSIONS: Since the outbreak of COVID-19, informal caregivers in Europe have had a higher probability of reporting mental health symptoms than non-caregivers.

The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia - a qualitative study.

BACKGROUND: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. METHODS: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. RESULTS: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. CONCLUSIONS: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic.

Neglected Needs of Family Caregivers during the COVID-19 Pandemic and What They Need Now: A Qualitative Study.

COVID-19 has had a negative impact on family caregivers, whether the care receivers lived with the caregiver, in a separate community home, in supportive living, or in long-term care. This qualitative study examines the points of view of family caregivers who care in diverse settings. Family caregivers were asked to describe what could have been done to support them during the COVID-19 pandemic and to suggest supports they need in the future as the pandemic wanes. Thorne's interpretive qualitative methodology was employed to examine current caregiver concerns. Thirty-two family caregivers participated. Family caregivers thought the under-resourced, continuing care system delayed pandemic planning, and that silos in health and community systems made caregiving more difficult. Family caregivers want their roles to be recognized in policy, and they cite the need for improvements in communication and navigation. The growth in demand for family caregivers and their contributions to the healthcare system make it critical that the family caregiver role be recognized in policy, funding, and practice.

Mental health, substance use, and suicidal ideation among unpaid caregivers of adults in the United States during the COVID-19 pandemic: Relationships to age, race/ethnicity, employment, and caregiver intensity.

BACKGROUND: Unpaid caregivers of adults play critical roles in health care systems by providing care to older adults and those with chronic conditions. The COVID-19 pandemic has heightened caregiving needs, forcing some into caregiving roles and disrupting others. We sought to estimate the prevalence of and identify factors associated with adverse mental health symptoms, substance use, and suicidal ideation amongst unpaid caregivers of adults versus non-caregivers. METHODS: During June 24-30, 2020, surveys were administered to U.S. adults. Quota sampling and survey weighting were implemented to improve sample representativeness of age, gender, and race/ethnicity. RESULTS: Of 9,896 eligible invited adults, 5,412 (54.7%) completed surveys and 5,011 (92.6%) met screening criteria and were analyzed, including 1,362 (27.2%) caregivers. Caregivers had higher adverse mental health symptom prevalences than non-caregivers, including suicidal ideation (33.4% vs 3.7%, p < 0.0001). Symptoms were more common among caregivers who were young vs older adults (e.g., aged 18-24 vs ≥65 years, aPR 2.75, 95% CI 1.95-3.88, p < 0.0001) and with moderate and high vs low Caregiver Intensity Index scores (2.31, 1.65-3.23; 2.81, 2.00-3.94; both p < 0.0001). LIMITATIONS: Self-report data may be subject to recall, response, and social desirability biases; unpaid caregivers were self-identified; child caregiving roles were not assessed; and internet-based survey samples might not fully represent the U.S. CONCLUSIONS: Caregivers experienced disproportionately high levels of adverse mental health symptoms. Younger caregivers and those with higher caregiving intensity were disproportionately affected. Increased visibility of and access to mental health care resources are urgently needed to address mental health challenges of caregiving.

"I Didn't Meet My Mother; I Saw My Mother": The Challenges Facing Long-Term Care Residents and Their Families in the Age of COVID-19.

The present research examines the effects of protective measures due to the coronavirus disease 2019 (COVID-19) pandemic within long-term care (LTC) settings on residents and their family members. Open-ended qualitative interviews were conducted with 14 family members of older adults who resided in LTC settings during the first wave of the pandemic in Israel. The first theme identified is Rupture, including the physical disconnect; the disruption in routine treatment to residents; and decline in the satisfaction with the setting. The second theme is Response, including sharing viewpoints and involvement in decision-making, as well as an intense ambivalence shared by family members. Our findings highlight the distress caused to residents and family members by the isolation and restrictions in LTC settings during the pandemic and underscore values and priorities that are central to them and their family members, including maintaining continuity, transparency, and working in unison with their families, staff, and management.

Effects of e-Health Training and Social Support Interventions for Informal Caregivers of People with Dementia-A Narrative Review.

Along with the burden commonly experienced by informal caregivers (ICs) of people with dementia (PwD), associated with the progressive decline that accompanies dementia, the lockdown due to the public health crisis has had a great negative impact on the emotional wellbeing, physical health, and social relationships of ICs. Support interventions through telemedicine represent an opportunity for ICs to learn the skills required for the care and maintenance of social networks. In this work, a narrative review of the effects of e-health training and social support interventions was carried out. A literature search was conducted using the ProQuest, Ovid, and Scopus databases. Information regarding social support (SS), psychological interventions, and training for the management of medications and behavioral changes was extracted. One hundred and nine studies were included in this review. Forums and training platforms were the main tools for ICs. The most effective platforms to improve SS include the participation of both ICs and health professionals. However, no significant improvements in objective caring skills were identified. Platforms developed specifically for ICs should be based in tools that ICs are familiar with, because many ICs have not yet incorporated Information and Communication Technologies in many activities of their daily lives. Education in the digitalization to ICs of PwD should be one of the priority objectives in telehealth interventions.