Engagement during post-acute care transition: Perceptions and experiences of family caregivers of older adults with dementia

Older adults with dementia experience hospitalizations and post-acute care transitions more than people without dementia and rely on family caregivers for support. Family caregivers of older adults with dementia, therefore, play a crucial role during care transitions, and caregiver engagement is acknowledged as a critical factor in promoting quality of care. Despite this, "engagement" has been exclusively defined from the perspective of clinical care providers in other settings, and little is known about the post-acute care experiences and perceptions of family caregivers. The purpose of this dissertation was to describe the meaning of engagement to family caregivers navigating post-acute care transition, to elucidate their perspectives on barriers and facilitators of engagement, and to explore their support needs.Following an interpretive descriptive approach and guided by Meleis's Middle Range transition theory, semi-structured interviews were conducted with a purposive sample of 15 family caregivers of older adults with dementia. Using an inductive coding process, similar codes were categorized by grouping codes that describe similar concepts related to the caregiver experiences and perceptions. The process helped to develop themes from the categories and a conceptual framework that described the meaning of engagement.Thematic findings revealed family caregivers' descriptions of the meaning of engagement during post-acute care transitions is linked to being there, having meaningful connection with professional care providers, and having communication with the person with dementia. Limited communication and not being able to be there were seen as barriers to engagement. Nine family caregivers' level of engagement was impacted by the COVID-19 pandemic new visitation policies. Facilitator to engagement were linked to having good communication with professional care providers and having past post-acute care transition experience. The support needs of family caregivers were also related to their relationship with healthcare providers and receiving support from family and friends. The study supports highlighting communication as an integral part of transition and makes an argument to expanding the Meleis's Middle Range transition theory. Findings of the study contribute to the dementia caregiving literature and make an appeal to healthcare providers and policymakers to include family caregivers as part of the care team. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Examining the Needs of Family Caregivers of People Living with Dementia in the Community during the COVID-19 Pandemic.

The COVID-19 pandemic has had a disproportionate effect on older adults and their family caregivers (FCGs). For FCGs, the pandemic has impacted almost every dimension of their lives and caregiving routines, from their own risk of becoming ill to their access to resources that support caregiving. The purpose of this mixed-methods study was to examine the impact of COVID-19 on FCGs' ability to provide care for their family member with dementia. A total of 115 FCGs who identified as having their family member living with dementia residing in the community completed the survey. Ten family caregivers participated in the follow-up focus groups. Recommendations to address the needs of FCGs now and in the future include: (1) making resources for care provision consistently available and tailored, (2) providing support for navigating the health care system, and (3) supplying concise information on how to provide care during public health emergencies.

"We've All Lost So Much": The Long-Term Care Home Experiences of Essential Family Caregivers During COVID-19.

BACKGROUND: During the coronavirus (COVID-19) pandemic, long-term care homes (LTCHs) imposed visitor restrictions that prevented essential family caregivers (EFCs) from entering the homes. Under these policies, EFCs had to engage in virtual, window, and outdoor visits, prior to the re-initiation of indoor visits. OBJECTIVE: To understand EFCs' visitation experiences with LTCH residents during COVID-19. METHODS: Seven virtual focus groups with EFCs were conducted and analysed using a thematic approach. FINDINGS: Six themes were identified: (a) inconsistent and poor communication; (b) lack of staffing and resources; (c) increasing discord between EFCs and staff during COVID-19; (d) shock related to reunification; (e) lack of a person-centred or family-centred approach; and, (f) EFC and resident relationships as collateral damage. DISCUSSION: Our findings reflect how EFCs' visitation experiences were affected by factors at the individual, LTCH, and health-system levels. Future sectoral responses and visitation guidelines should recognize EFCs as an integral part of the care team.

Living with autism in the pandemic era - how the health crisis affected the disability welfare policy in the region of lesser Poland

Our chapter focuses on the situation of children and adolescents with autism spectrum disorders (ASD) and their families in the context of the COVID-19 pandemic. We present the results of a qualitative study aimed at outlining the state of policies dedicated to individuals with ASD prior to and during the global health crisis. We conducted desk research based on documents published by third sector organisations dedicated to individuals with ASD and categorised in our study as epistemic communities. Next, we carried out interviews with parents and professionals on the social practices of supporting children and adolescents with ASD during the period of the COVID-19 pandemic in the region of Lesser Poland [PL: Małopolska]. The discourse of NGOs enabled us to identify the greatest challenges of individuals with ASD and their families and solutions introduced prior to and during the pandemic. Based on the accounts of parents and professionals, we found that as many as every single person with ASD struggled with the epidemic in an individual manner, ceasing pre-pandemic habits, adapting to the new school context, and missing contacts with peers were the major difficulties. © 2023 Anna Prokop-Dorner, Natalia Ozegalska-Łukasik and Maria Światkiewicz-Mósny. All rights reserved.

Lack of freedom predicted poor self-reported health among family caregivers of children with disabilities during the COVID-19 pandemic in Europe.

AIM: We aim to assess the effects of the COVID-19 pandemic on self-reported health and quality of life among family caregivers of children with disabilities across Europe. DESIGN: Cross-sectional study. METHODS: Data from the survey by the Eurocarers and IRCCS-INRCA were used. The data were collected between November 2020 and March 2021 from 16 European countries. Data analysis was done using regression analysis to identify family caregivers' self-reported health and well-being predictors. RESULTS: This study included 289 caregivers. The mean age of children was 12 years. Their family caregiver's mean age was 44, and they were mainly women. Experience of lack of freedom predicted family caregivers' poor self-reported health and quality of life. Children's interrupted health and social services also predicted family caregivers' poor self-reported mental well-being. Longitudinal evidence on the pandemic's effects and a diverse view of family caregivers of children with disabilities are needed to plan effective post-pandemic health services and nursing practice. No Patient or Public Contribution.

Should Cash Subsidy Be Offered to Family Caregivers for the Elderly? The Case of Hong Kong.

Hong Kong's Covid-19 epidemic circumstances have given us a valuable opportunity to reflect on Hong Kong's elderly care policies. This essay argues that Hong Kong should learn from the West and provide a subsidy to family caregivers for proper elderly care. We rebut the social and moralistic reasons for not introducing such a subsidy in Hong Kong. We indicate that providing cash subsidy to family caregivers does not monetize or tarnish Confucian filial obligation to take care of elderly people, but enable adult children from low-income families to undertake this obligation effectively. In addition, we contend that providing such a subsidy would not significantly affect the job market in Hong Kong and that incurred financial and manpower costs for monitoring family care are controllable.

Nursing home decision satisfaction for family caregivers of older adults

Nursing Home Decision Satisfaction for family caregivers who have made nursing home decisions with and on behalf of older adults was examined through Self Determination Theory. Participants (n = 297) completed the study via Amazon Mechanical Turk during March 2021. Structural equation modeling was used to assess relationships between Autonomy Support, Multicultural Inclusiveness, Perceived Competence, COVID-19, and Nursing Home Decision Satisfaction. Specifically, the relationship between the exogenous variable of Autonomy Support and the endogenous variable of Nursing Home Decision Satisfaction was partially mediated by Perceived Competence and demonstrated acceptable fit. Results suggest that Self Determination Theory is a compelling and useful framework for assessing Nursing Home Decision Satisfaction for family caregivers of older adults. Although not included in the final partially mediated model, Multicultural Inclusiveness was significantly and directly associated with Perceived Competence. This suggests that though Multicultural Inclusiveness may be an important component of Relatedness within Self Determination Theory, the assessment of this important factor is underdeveloped. Satisfaction with COVID-19 Safety Measures, Communication and Decision after COVID-19 were also significantly associated with Autonomy Support and Multicultural Inclusiveness. Implications for nursing homes indicate the importance of fostering autonomy support for family caregivers as findings in this study indicated it significantly contributed to nursing home decision satisfaction. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Benefits of personal music listening for family caregivers of critically ill patients during the post-COVID era.

Objective: This descriptive study surveyed family caregivers of patients in intensive care units (ICUs) during the COVID-19 pandemic to examine the impact of musical listening on their psychological well-being. Method: The data collected in this study compared with collected from similar research conducted before the COVID-19 pandemic in 2017. The previous study had 195 participants, and the current study had 92. To measure the participants' psychological well-being, the Korean version of the Center for Epidemiologic Studies Depression Scale and the World Health Organization Quality of Life Scale were administered. An investigator-constructed questionnaire was also used to collect information related to participants' engagement in music activities including music listening in their everyday lives and their perceptions of music's benefits. Results: A two-way ANOVA showed significant effects for time (e.g., before vs. during COVID-19) and involvement in personal music listening (yes vs. no) on current emotional state, with family caregivers reporting significantly greater negative emotions during COVID-19 than before and personal music listening having a positive effect on perceived emotions. For quality of life there was no significant time effect, while the listening effect was statistically significant, indicating a significantly higher quality of life in the group who engaged in music listening in their everyday lives compared to the group who did not. There were no significant time or listening effects for perceived level of depression. Conclusion: Given the COVID-19 situation and the need to transition to a post-pandemic era, this study suggests that music listening can be an effective option for family caregivers to implement as a resource for attenuating emotional distress and enhancing self-care.

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.

Family caregivers' experience of communication with nursing home staff from admission to end of life during the COVID-19 pandemic: A qualitative study employing a transitional perspective.

OBJECTIVES: Family caregivers' (FCs) caregiving in nursing home (NH) moves across 3 main phases: transitioning relatives to long-term care, worsening of a relative's conditions, and end of life; each phase brings specific challenges that FCs must confront. Moreover, during the COVID-19 pandemic, strict mandatory visitor restrictions affected communication modalities. This study explored FCs' experience of communication with NH staff during the COVID-19 pandemic from admission to end of life. METHODS: A descriptive qualitative study with inductive content analysis was performed in 7 Italian NHs from May to June 2021. NH managers purposively identified 25 FCs at different phases of their caregiving trajectory: transitional (i.e., admission in the previous 8 weeks, n = 8), deterioration-in-condition (i.e., acknowledged changes in care needs of their relative after trigger events, n = 10), and end-of-life phase (i.e., death expected in the next weeks or a few months, n = 7), who were interviewed. RESULTS: Regardless the phase of caregiving trajectory, what mattered most to FCs was the opportunity to have regular and sensitive discussions with health-care professionals. The need of in-person communication increased nearing death. The COVID-19 pandemic enhanced FCs' need to interact with health-care professionals they trusted. Knowledge of residents' preferences mitigated FCs' turbulent emotions throughout the overall caregiving trajectory. SIGNIFICANCE OF RESULTS: Findings suggest that in-person contacts should be prioritized and facilitated when possible, particularly at the end of life; nonetheless, meaningful communication can occur also through remote modalities. Investments in training health-care professionals about effective long-distance communication and supportive skills can help trusting relationships to be established. Open discussions about residents' care preferences should be encouraged.

Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study.

BACKGROUND AND OBJECTIVES: Children with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers of children with medical complexity during the pandemic. METHODS: We conducted semi-structured interviews with family caregivers of children with medical complexity from a tertiary pediatric hospital. Interview questions focused on the aspects of caregiving for children with medical complexity, impact on caregiver mental and physical well-being, changes to daily life secondary to the pandemic, and experiences receiving care in the healthcare system. Interviews were conducted until thematic saturation was achieved. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis. RESULTS: Twelve semi-structured interviews were conducted. The interviews revealed three major themes and several associated subthemes: (1) experiences with the healthcare system amid the pandemic (lack of access to healthcare services and increased hospital restrictions, negative clinical interactions and communication breakdowns, virtual care use); (2) common challenges during the pandemic (financial strain, balancing multiple roles, inadequate homecare nursing); and (3) the pandemic's impact on family caregiver well-being (mental toll, physical toll). CONCLUSIONS: Family caregivers of children with medical complexity experienced mental and physical burden due to the intense nature of their caregiving responsibilities that were exacerbated during the pandemic. Our results highlight key priorities for the development of effective interventions to support family caregivers and their children.

"I couldn't": A phenomenological exploration of ethical tensions experienced by bereaved family members during the pandemic.

INTRODUCTION: The COVID-19 pandemic entailed significant changes in accompaniment, end-of-life, and bereavement experiences. In some countries, public health measures prevented or restricted family caregivers from visiting their dying loved ones in residences, long-term care institutions, and hospitals. As a result, family members were faced with critical decisions that could easily lead to ethical dilemmas and moral distress. AIM: This study aimed to understand better the experience of ethical dilemmas among family caregivers who lost a loved one. METHDS: We interviewed twenty bereaved family caregivers and analysed their narratives using Interpretative phenomenological analysis. RESULTS: Our analysis suggests that family caregivers struggled with their multiple responsibilities (collective, relational, and personal) and had to deal with the emotional cost of their choices. Results display three emerging themes describing the experience of ethical struggles: (1) Flight or fight: Struggling with collective responsibility; (2) Being torn apart: Assuming relational responsibility and (3) "Choosing" oneself: The cost of personal responsibility. DISCUSSION/CONCLUSION: Results are discussed and interpreted using an ethical, humanistic, and existential conceptual framework.

Exploring family caregiver challenges in caring for patients with COVID-19 in intensive care units.

Background: Families of individuals hospitalized in an intensive care unit (ICU) with severe illnesses, such as COVID-19, are experiencing a range of physical and emotional stressors. Identifying the challenges faced by family members and providing support to loved ones battling life-threatening diseases can lead to improved treatment and care for the said family members in a healthcare setting. Aim: The current study was conducted to explore and understand the experiences of family caregivers caring for their loved ones battling COVID-19 in an ICU. Methods: This descriptive qualitative study was conducted from January 2021 to February 2022, based on the experiences of 12 family caregivers of patients with COVID-19 hospitalized in the ICU. Data collection was conducted through purposeful sampling using semi-structured interviews. MAXQDA10 software was used for data management, and conventional content analysis was used for qualitative data analysis. Results: The present study conducted interviews with caregivers to understand their experiences while caring for a loved one in an ICU. Three main themes emerged from the analysis of these interviews: hardship of care trajectory, pre-loss mourning, and contributing factors in resolving family health crises. The first theme, the hardship of care trajectories, encompasses categories such as immersion in the unknown, lack of care facilities, negligence in care, neglect of families by healthcare providers, self-ignorance, and perceived stigma. The second these was pre-loss mourning that included some categories such as emotional and psychological turmoil, witnessing the exhaustion of loved ones, separation suffering, the fearing of loss, anticipatory grief, blame related to the disease causative agents, and perceived helplessness and despair. The third theme was contributing factors in resolving family health crises that included categories of the critical role of family caregivers in health engagement, the role of healthcare professionals in health engagement, and the role of interpersonal factors in health engagement. A total of 80 subcategories were also obtained based on the experiences of the family caregivers. Conclusion: This study's findings indicate that families can play an important role in resolving their loved ones' health problems in life-threatening situations such as the COVID-19 pandemic. Moreover, healthcare providers must recognize and prioritize family-based care and trust the families' ability to effectively manage health crises. Healthcare providers should also be attentive to the needs of both the patient and their family members.

Family caregivers as essential partners in care: examining the impacts of restrictive acute care visiting policies during the COVID-19 pandemic in Canada.

INTRODUCTION: During the pandemic many Canadian hospitals made significant changes to their 'open family presence' and 'visitor policies' to reduce the spread of COVID-19 by instituting restrictive or 'zero visiting' policies in healthcare facilities. These policies have the potential to create great hardship, anxiety and stress for patients, families, caregivers and frontline healthcare providers (HCPs); along with concerns about the quality and safety of patient care. The presence of family members and other caregivers as essential partners in care is an explicit expression of the philosophy of patient- and family-centred care (PFCC) in action. The purpose of this study is to increase our understanding of how changes to family presence and visiting policies and practices during the COVID-19 pandemic have impacted patients, family caregivers and frontline healthcare providers (HCPs) in acute care hospitals. METHODS: A total of 38 in-depth semi-structured interviews were conducted with patients, family caregivers and HCPs in Canadian provinces who had experience with visiting policies in acute care settings during the pandemic. COVID patients, and the caregivers of COVID patients, were excluded from this study. A maximum variation sampling strategy was used to guide the selection and recruitment of patients, family caregivers and HCPs, based on our interest in gaining a diversity of perspectives and experiences. RESULTS: Many patients, family caregivers, and HCPs view family caregiver presence as integral to PFCC, describing the essential roles played by family caregivers prior to the pandemic. There were commonalities across all three groups with respect to their perspectives on the impacts of restrictive visiting policies on patients, family caregivers and HCPs. They fell into four broad integrated categories: (1) emotional and mental health; (2) communication and advocacy; (3) safety and quality of care; and (4) PFCC, trust in the healthcare system, and future decisions regarding accessing needed healthcare. Recommendations for pandemic visiting policies were also identified. CONCLUSIONS: The findings from this study highlighted several impacts of restrictive family caregiver presence or visiting policies implemented during COVID-19 on patients, family caregivers and HCPs in acute healthcare settings across Canada. Participants emphasized that there is no "one-size-fits-all" caregiver presence policy that will address all patient needs. To be consistent with the practice of PFCC, patients and family caregivers are welcomed as part of the healthcare team in ways that work for them, demonstrating that flexibility in family presence and visiting policies is essential.

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

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

Current status and influencing factors of care burden of pancreatic cancer caregivers under COVID-19.

Objective: To explore the level of care burden and its influencing factors of caregivers of pancreatic cancer patients during hospitalization under the background of COVID-19. Methods: From September 2021 to December 2021, in Jiangsu Province Hospital, the convenience sampling method was used to investigate the care burden level of family caregivers of pancreatic cancer patients, and univariate and multivariate analysis methods were used to analyze the influencing factors. The survey tools included the General Information Questionnaire, the Family Caregiver Care Burden Scale, the Hospital Anxiety and Depression Scale, the Benefit Discovery Rating Scale, and the General Self-Efficacy Scale. Results: A total of 100 subjects were included in this study, of which 45% were male and 55% were older than 50 years. In the Context of COVID-19, the care burden of caregivers of pancreatic cancer patients was at a mild level, and the main influencing factors were family economic status (p < 0.001), anxiety and depression level (p < 0.001) and self-efficacy (p < 0.001). Conclusion: Medical staff should pay attention to the caregivers of pancreatic cancer with a heavy family burden, and pay attention to their anxiety and depression, and take corresponding measures to improve the self-efficacy of the caregivers, so as to reduce the care burden.

Relationships between Burden of Care and Mental Health of Family Members of Hospitalized Patients with COVID-19

Background: Hospitalization of coronavirus disease 2019 (COVID-19) patients can lead to a burden of care and cause health problems for the family members of the patients. This study aimed to investigate the relationship between the burden of care and the mental health of family members of hospitalized patients with COVID-19. Methods: This cross-sectional correlation study was conducted from November 2021 to February 2022. The study population consisted of 84 family members of COVID-19 patients who were hospitalized in Shariati Hospital affiliated with the Tehran University of Medical Sciences. The subjects were selected via consecutive sampling. Data collection was done using a demographic information form, the Depression Anxiety Stress Scales-21, the Zarit Burden Interview, and the 12-item General Health Questionnaire. Data were analyzed using SPSS 16 and at a significance level of 0.05. Results: More than half of the participants (51.22%) experienced a mild to moderate level of care burden, while 17.07% of them experienced a moderate to severe level of care burden. The mean score of mental health in the participants was 16.925±1.953. By adjusting the demographic variables and the Depression Anxiety Stress Scales-21, the level of stress of family members led to more burden of care (coefficient beta= 0.608, 95% confidence interval= 0.451-1.556, P=0.001). Conclusion: Paying attention to the issue of stress in the family members of hospitalized patients with COVID-19 and supporting these individuals can help to provide better care to the patients and reduce health challenges. © The author.

"Let me touch him": Perceptions and experiences of family caregivers of nursing home residents during the COVID-19 outbreak in Israel.

Older adults in nursing homes were particularly vulnerable to COVID-19 morbidity and mortality worldwide. Due to the COVID-19 pandemic, visitations in nursing homes were restricted. The present study examined the perceptions and experiences of family caregivers of nursing home residents during the COVID-19 crisis in Israel and their coping strategies. Online focus group interviews were held with 16 family caregivers of nursing home residents. Three main categories were identified through Grounded Theory techniques: (a) Anger and decreased trust in nursing homes; (b) Perception of the residents as victims of the nursing home policy; (c) Coping strategies at different levels. The outbreak redefined family caregivers' understanding of their role. Practical implications include making the voice of the family caregivers heard, identifying effective coping strategies, and creating a dialogue between family caregivers, nursing home managements, and staff.

End-of-life care for people with dementia on a green care farm during the COVID-19 pandemic: a qualitative study.

OBJECTIVE: Green care farms combine agriculture production with health-related, social and educational services. In the Netherlands, they form an alternative to traditional nursing homes for people with dementia. Green care farms that offer 24-hour care, also offers end-of-life care. To date, little is known about end-of-life care for people with dementia on green care farms. This study aimed to explore the experiences of healthcare workers and family caregivers with end-of-life care for people with dementia who died on a green care farm. DESIGN: An explorative, descriptive qualitative design with a phenomenological approach. SETTING AND PARTICIPANTS: A purposive sample of 15 participants - seven healthcare workers and eight family caregivers - from three green care farms in the Netherlands. METHODS: Semi-structured, in-depth interviews were conducted to explore participants' experiences with end-of-life care, including topics such as advance care planning, the influence of COVID-19, and bereavement support. Transcripts were thematically analysed using Braun and Clarke's approach. RESULTS: Four main themes were extracted: 1) tailored care and attention for the individual resident, 2) reciprocal care relationships between healthcare workers and family caregivers, 3) compassionate care and support in the dying phase, and 4) the influence of COVID-19 on end-of-life care. CONCLUSION AND IMPLICATIONS: The overall experience of the healthcare workers and family caregivers was that end-of-life care offered on green care farms is person-centred and compassionate and is tailored to the person with dementia and their family caregivers. Despite the COVID-19 pandemic, healthcare workers and family caregivers were satisfied with end-of-life care on the green care farms. Green care farms may offer a valuable alternative care setting for people with dementia in their last phase of life. More research is needed to investigate green care farms'benefits compared to other, more traditional settings.