Search

Research has shown significant differences and inequalities in the health of women and men who care for older dependent family members, with women having poorer health and suffering more from overload. Women internalize a cultural model of caregiving involving social norms whereby caring becomes a central dimension of gender-female identity, cutting across other aspects of life. This study takes a biopsychosocial approach, understanding gender as a determinant of health, in order to investigate the processes of subjectivation (and "technologies of the self") that mediate between the social organization of care and the health of women. A reflexive thematic analysis was undertaken in this qualitative study, following in-depth interviews with nineteen women caring for family members. The results show that women's biopsychosocial health is affected by the subjective positions they adopt in order to submit to or resist gender-based social norms about caring in three dimensions: their relationship to their own health problems, their experience of vulnerability, and the place of love and morality in relation to being a caregiver. Those (inter)subjective processes reflect the neoliberal update of the gendered social organization of care and the way its social discourses, such as free choice and unstinting performance, relate to female caregivers' biopsychosocial health. It is necessary to deconstruct this traditional model and the self-regulated processes as recast by the neoliberal order for the sake of women's health, to relieve them of this burden. It is essential to commit to sociopolitical articulations aimed at shared responsibility in care. [ABSTRACT FROM AUTHOR]

Aim: This study explored the impact of different care modes on the outcome of hospitalized patients with acute ischaemic stroke (AIS) during hospitalization and 3 months after discharge. Methods: This was a prospective cohort study comparing the outcomes at hospitalization, at discharge, and at 3 months post discharge among AIS patients with different caregiving arrangements from 9, December 2022 to 20, August 2023. The general information questionnaire, Modified Barthel Index, Shortened General Comfort Questionnaire, Perceived Social Support scale, Herth Hope Index, modified Rankin scale and EQ‐5D‐5L were utilized for the investigation. Results: The psychological evaluation scores during hospitalization, including comfort, perceived social support, and hope, did not significantly differ between the two groups of AIS patients (p >.05). Moreover, there were no significant impacts observed in terms of length of stay (LOS) at the hospital or hospitalization expense (p >.05). The proportion of patients with intact functionality was greater in the family caregiver group 3 months after discharge (16.5%). However, when stratified based on prognosis, the difference in outcomes between the two groups of patients did not reach statistical significance (p >.05). The analysis of ADL, quality of life and stroke recurrence in 276 surviving ischaemic stroke patients 3 months post discharge indicated no differences between the two groups across all three aspects (p >.05). Conclusion: Older and divorced or widowed AIS patients tend to prefer professional caregivers. The psychological state during hospitalization, length of hospital stay and hospitalization expenses are not influenced by the caregiving model. Three months post discharge, a greater proportion of patients in the family caregiving group had intact mRS functionality, but this choice did not impact patient prognosis, stroke recurrence, quality of life or independence in ADL. [ABSTRACT FROM AUTHOR]

Copyright of University of Health Sciences Journal of Nursing is the property of Saglik Bilimleri Universitesi and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Family caregivers of dementia patients face significant challenges, including managing their own emotional responses. Understanding factors influencing expressed emotion (EE) is crucial for effective support interventions. The aim of this study was to explore and describe changes in EE among family caregivers of dementia and its associated factors at different time points over 3 months. Methods: A 3‐month observational study was conducted in Japan. We collected demographically detailed data on family caregivers currently providing care, including care burden, relationship closeness, and depression. We assessed EE using the validated Family Attitude Scale (FAS). After adjustment for multiple confounding factors, multivariate linear regression analysis was performed to assess factors affecting EE at various time points. Linear regression analysis with generalised estimating equations was used to assess associations between 3‐month time‐varying EE and burden, intimacy, and depression. Results: Fifty‐six family caregivers completed the study. Changes in FAS scores did not show statistical differences over 3 months. It is worth noting that the degree of relationship closeness and care burden are important influencing factors of EE in both cross‐sectional analysis and longitudinal analysis. Conclusions: Early identification of risk factors can aid in developing interventions aimed at preventing high levels of EE in the dementia family, thereby mitigating their detrimental effects. Tailored interventions are essential to enhance caregiver well‐being and cultivate positive caregiver–patient relationships. [ABSTRACT FROM AUTHOR]

Family caregivers care for individuals in the home environment. Family caregivers of individuals with chronic obstructive pulmonary disease (COPD) observe breathlessness in the care recipient. Breathlessness is a main symptom of COPD, and watching breathlessness creates emotional distress and a toll on family caregivers. The purpose of this integrative review was to explore the literature on family caregivers and witnessed breathlessness in individuals with COPD. An understanding of family caregiver experiences of breathlessness will allow for further development of evidence-based practice and research. An integrative review was performed using the five-step process of the Whittemore and Knafl Integrative Review Model. Literature search results were reported using the preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines. An overarching theme of constant care and burden resulted from the 18 studies on family caregivers and witnessed breathlessness in individuals with COPD. Three themes: psychosocial implications of caregivers, response ambiguity, and knowledge of interventions represented family caregivers and breathlessness in the care recipient among the studies. This integrative review provides insight on family caregivers and witnessed breathlessness in individuals with COPD. An understanding of the family caregiver perception of breathlessness in the care recipient can help home healthcare professionals empathize with and offer support specific to the needs of family caregivers of individuals with breathlessness from COPD, heart failure, and other chronic diseases. [ABSTRACT FROM AUTHOR]

Family caregivers experience health, financial, and social burdens related to caregiving responsibilities. North Carolina has an estimated 1.3 million caregivers, equating to a value of $13.1 billion per year. Caregiving demands warrant additional understanding of the caregiver lived experiences. Our objective was to document these North Carolina caregiver experiences during the era of COVID-19 through focus groups. Participants were recruited through diverse community organizations. All 44 caregivers who completed interest solicitation surveys were invited to participate; 29 caregivers participated across 11 groups. Thematic analysis was used to code and synthesize transcripts from each participant using Dedoose software and guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). Themes included: caregiver routines (caregiving as an all-encompassing role; dimensions of support); most challenging parts (exhaustion and defeat; lacking support; evolving relationships); most rewarding parts (care recipient resilience; quality time; sense of purpose); social service and healthcare system interactions (positive interactions; negative interactions; inaccessible services); COVID-19 impacts on caregiving (opportunities; challenges); and caregiver suggestions for system improvements (increasing financial support; improved coordination; ideological shifts). Caregivers shared unmet needs, challenges, and opportunities for improvement. Examining these needs and experience-informed recommendations can help advance additional caregiving research, policy-making, and program development. [ABSTRACT FROM AUTHOR]

Introduction: Latinx Millennial caregivers are an understudied minority group in the United States. Due to life stage and cultural values, these caregivers struggle to balance conflicting priorities with career, family, and caregiving. They also face systemic barriers and healthcare disparities. Methods: Participants (N = 29) were recruited locally and nationally. Qualitative data were collected using five focus groups and one individual interview. Interviews were analyzed by seven coders using thematic analysis with an inductive approach. Results: Meta-themes included (a) the Latinx experience with culture, immigrant status, and structural barriers; and (b) being a super caregiver: being everything to everyone. Additional main themes were identified including family well-being, occupational and financial well-being, social support dynamics, challenges and rewards of family caregiving, and coping strategies. Discussion: Clinical interventions for Latinx Millennial caregivers should address cultural background, value of family/community, and systemic barriers for care and support. [ABSTRACT FROM AUTHOR]

Background: Effective medication management is crucial for ensuring timely pain and symptom control at the end of life. Dying in pain is a major concern for patients, yet some find less effective pain control at home. Family caregivers (FCGs) play a vital role in managing pain and symptom control for dying patients. However, the experience of administering medications at home for terminal-stage patients has not been widely recognized or understood. Our study aimed to explore the experiences of FCGs in administering medications to adult dying patients. Methods: We conducted a directed content analysis of data from 73 semi-structured interviews with FCGs across 19 Chinese provinces from 2021 to 2023. FCGs were recruited through the Voluntary Cooperative Network Research. We asked, "Could you recall the end-of-life care process for the patients?" We aligned the themes with the five issues identified by Wilson et al. (2018): administration, organizational skills, empowerment, relationships, and support. Results: FCGs in China exhibit concerns about over-engagement and empowerment in medication administration, concealing medication information from the patient, and medication accessibility. FCGs faced significant challenges in accurately identifying and addressing pain and symptoms, determining appropriate dosages, accessing effective medications, and managing the emotional stress associated with potential medication errors. Financial burden, medication regulatory restrictions, geographical inequality, and travel restrictions during COVID impeded patients and FCGs from accessing medication. A culturally specific finding is the use of alternative medicine at the end of life. Conclusion: Our findings build upon Wilson et al.'s framework and extend their insights on empowerment, highlighting the need for policies to support home-based palliative care professionals in training FCGs for effective medication administration. [ABSTRACT FROM AUTHOR]

Background: Time in healthcare facilities is associated with worse patient quality of life (QoL); however, impact on family caregiver QoL is unknown. We evaluate care recipient days not at home—days in the emergency department (ED), inpatient (IP) care, and post‐acute care (PAC)—to understand how care recipient days not at home correspond to family caregiver QoL. Methods: Secondary data were linked to care recipient utilization data. Elastic net machine learning models were used to evaluate the impact of a single day of utilization in each setting on binary QoL outcomes. We also compared composite weighted and unweighted "days not at home" variables. Two time periods, 6 and 18 months, were used to predict three caregiver QoL measures (self‐rated health, depressive symptoms, and subjective burden). Results: In the 6‐month timeframe, a single day of ED utilization was associated with increased likelihood of poor QoL for all three assessed outcomes (range: 1.4%–3.2%). A day of PAC was associated to a modest degree with increased likelihood of caregiver burden (0.2%) and depressive symptoms (0.1%), with a slight protective effect for self‐rated health (−0.1%). An IP day had a slight protective effect (−0.2 to −0.1%). At 18 months, ED and IP had similar, albeit more muted, relationships with caregiver burden and depressive symptoms. PAC had a slight protective effect for caregiver burden (−0.1%). Cumulative days in all settings combined generally was not associated with caregiver QoL. Conclusion: Whereas total care recipient time away from home had some negative spillovers to family caregivers, the countervailing effects of unique settings on caregiver QoL may mask net QoL effects. This finding limits the utility of a single care recipient home time measure as a valid caregiver‐centered measure. Considering cumulative care recipient time in individual settings separately may be needed to reveal the true net effects on caregiver QoL. [ABSTRACT FROM AUTHOR]

The transitional care model for people who have suffered brain injuries is a relatively recent addition to the Thai healthcare system. The aim of this study was to explore experience of Thai Isan older stroke survivors and their family caregivers across different points of transition from hospital to home. Fifteen dyads of older stroke survivors and their family caregivers were recruited following the inclusion and exclusion criteria. Data were collected through participant observations and semi-structured interviews. Forty-seven participation observation field notes and twenty-four interview transcriptions were analyzed using the Four Phases of the Data Analysis Enabler and the Leininger–Templin–Thompson Ethnoscript Coding Enabler. Three themes emerged: I feel lost with managing care at home; it has been challenging for our family to maintain continuity of care; and it is a matter of who fits in and is convenient for family care responsibilities. The findings of this study have highlighted the dispersion of care among Thai-Isan people during the patient's transition to home. Therefore, a transitional care plan should be developed that specifies who is responsible for monitoring and supporting patients and families throughout this period. [ABSTRACT FROM AUTHOR]

Background: Nurses, as the main healthcare workers during the COVID-19 pandemic, were at high risk of contracting the disease. Family caregivers played a vital role in the support and recovery of patients with COVID-19. The experiences of family caregivers of nurses are very important due to the nature of their job. However, little information is available in this field. To this end, the present study aimed to explore the experiences of family caregivers of nurses who recovered from COVID-19. Methods: This descriptive qualitative study was conducted in one of the hospitals in southeastern Iran in 2022. The participants were 12 family caregivers of nurses who recovered from COVID-19 and were selected through purposive sampling. The data were collected through semi-structured interviews and analyzed using conventional content analysis. The Consolidated Criteria for Reporting Qualitative research checklist was used to report the findings. Results: The analysis of the data revealed psychosocial consequences as main theme, three categories and nine subcategories including negative emotions and attitudes (fear of deterioration/death, fear of frequent infection, fear of transmitting infection to others, despair of recovery, Changing attitudes toward the nursing profession), caregiver burden (role conflict, economic pressure) and lack of support, ineffective interactions and isolation (Lack of support from nursing managers and colleagues, ineffective interactions and isolation). Conclusion: Like other caregivers, family caregivers of nurses recovered from COVID-19 experienced psychosocial consequences and a heavy burden of responsibility. However, what differentiates our findings from the results reported in previous studies is the change in caregivers' attitudes toward nursing and regret for their family members being nurses. The lack of support from medical staff and managers for nurses, the condition of nurses frequently contracting COVID-19 due to the nature of their profession, and the fear of transmitting the infection to others due to contact with COVID-19 patients in the workplace expose these caregivers to additional stress and many risks. Thus, these caregivers need more attention and support in similar situations; an issue that seems to have been neglected during the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

This study utilized nationally approved data from the 2022 Long-Term Care Survey of Korea to examine the factors associated with career disruptions and employment status among family caregivers of home-based care recipients. Descriptive statistics, chi-square tests, one-way ANOVA, and multinomial logistic regression analysis were employed to address the research questions. The results indicated that 19.39% of family caregivers of home-based care recipients experienced career disruptions due to informal caregiving. Demographic factors such as gender, age of family caregivers, and their relationship with care recipients predicted their employment status. Gender was a significant explanatory factor, as daughters/daughters-in-law were more likely to be in insecure employment positions than sons. Lower household income and older age were also associated with employment insecurity. Recommendations include coverage expansion, family support programs, and pension credit for family caregivers to meet the needs of care recipients and their families. [ABSTRACT FROM AUTHOR]

Advanced care planning (ACP) utilization remains very limited in rural communities compared to urban areas. ACP earlier in the disease trajectory is particularly important for people with dementia (PWD) due to its progressive nature affecting their decision-making ability. Considering the well-documented benefits of ACP in improving the quality of end-of-life (EOL) care, the rural vs. urban disparity may indicate poorer EOL quality for rural PWD. This study aimed to explore barriers and current resources for ACP of PWD from the perspectives of health or social service providers serving rural communities. Using a qualitative approach, semi-structured face-to-face interviews were conducted with 11 health or social service professionals serving older adults and their caregivers in rural Alabama. Thematic analysis revealed three major barriers: (1) lack of knowledge, (2) psychosocial barriers, and (3) limited access to healthcare. Participants also showed misconception that a lawyer or a notary is required for ACP. Two themes arose in the participants' recommendations to address the barriers: (1) providing ACP-relevant information and (2) addressing psychosocial stressors about ACP. This study highlighted an urgent need for social policy in ACP education for caregivers and service providers in rural settings. [ABSTRACT FROM AUTHOR]

Background: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care. Methods: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires. Results: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated. Conclusions: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care. [ABSTRACT FROM AUTHOR]

Background: The family plays a vital role in T2DM self-management, but many families need to understand their role and function as caregivers. This lack of understanding can increase the burden of disease management, contributing to the emergence of psychological problems in people with T2DM, such as fear of hypoglycemia, which in turn worsens blood glucose control. The Family Caregiver Empowerment Model (FCEM) intervention is one model that can be used to empower families as caregivers in T2DM self-management. Purpose: This study aimed to analyze the effect of the FCEM intervention on the fear of hypoglycemia in people with T2DM. Methods: The study design was quasi-experimental with a randomized control pretest-posttest design. The sample size consisted of 85 respondents (a pair of family caregivers and people with T2DM), who were randomly divided into two groups: the treatment group (41 respondents) and the control group (44 respondents). The FCEM intervention was conducted once per week for ten weeks for family caregivers, and fear of hypoglycemia was measured using the Indonesian version of the Fear of Hypoglycemia Scale questionnaire. The data were analyzed using the Wilcoxon signed rank test and independent t-test. Results: The results showed significant differences in fear of hypoglycemia between the pre-test and post-test in the treatment group (p=0.001) and the control group (p=0.001). However, there was a significant difference in the decrease of fear of hypoglycemia between the treatment and control groups (t=-7.087; p=0.001). This finding suggests that FCEM intervention can significantly reduce the fear of hypoglycemia in people with T2DM. Conclusions: The FCEM intervention can reduce the fear of hypoglycemia in people with T2DM by increasing the family caregiver's ability and support in managing T2DM. Nurses can use the FCEM intervention in T2DM management to improve diabetes management outcomes. [ABSTRACT FROM AUTHOR]

Adult child caregivers of persons with severe dementia (PWSDs) experience absenteeism due to caregiving. We quantified employed adult child caregivers' absenteeism; its association with PWSDs' functional impairment and health shocks; and characteristics of caregivers not experiencing absenteeism in the presence of PWSDs' health shocks and high functional impairment. We used a prospective cohort of 111 employed adult child caregivers of community-dwelling PWSDs in Singapore surveyed every 4 months for 1 year. We calculated absenteeism days due to caregiving and the corresponding absenteeism cost. Findings showed that 43% of the caregivers experienced absenteeism due to caregiving at least once during 1 year. On average, in a month, caregivers experienced 2.3 (SD = 5.9) absenteeism days and S$758 (SD = 2120) absenteeism cost. Those caring for PWSDs with high functional impairment experienced an additional 2.5 absenteeism days and S$788 absenteeism cost versus caregivers of PWSDs with low functional impairment. Caregivers whose PWSDs experienced a health shock experienced an additional 1.8 absenteeism days and S$772 absenteeism cost versus caregivers of PWSDs without a health shock. Co-residence with PWSDs worsened the impact of PSWDs' high functional impairment on caregivers absenteeism. Caregivers not co-residing with PWSDs and not using a maladaptive coping style were less likely to experience absenteeism when caring for PWSDs with a health shock. Results suggest a need to support caregivers of PWSDs to better cope with their caregiving in order to mitigate caregivers' absenteeism. [ABSTRACT FROM AUTHOR]

Aim: The number of older adults with chronic diseases is growing. When caring for and accompanying their family members, the quality of life (QoL) of elderly family caregivers is highly affected. The aim is to find the relationship between family burden, family environment, and QoL among caregivers of older adults with chronic diseases. Methods: The study involved 409 caregivers in Samarinda (East Kalimantan), Makassar, and Gowa (South Sulawesi), Indonesia. It analyzed family burden, family environment, and QoL using descriptive, Spearman, Kruskal--Wallis, Mann--Whitney, and hierarchy regression analysis using SPSS version 21. Results: Family burden was negatively associated with QoL physical domain (r = -0.05, p = 0.26), psychological domain (r = 0.05, p = 0.31), and social domain (r = -0.02, p = 0.55), Family burden was positively associated with QoL environmental domain (r = -0.09, p = 0.05). Family environment was positively associated with QoL physical domain (r = -0.24, p = 0.00), psychological domain (r = 0.39, p = 0.00), social domain (r = 0.30, p = 0.00), and environmental domain (r = 0.41, p = 0.00). Hierarchy regression analysis shows that family environment has a tremendous positive correlation on QoL physical domain (β = 0.21, p = 0.00), psychological domain (β = 0.31, p = 0.00), social domain (β = 0.23, p = 0.00), and environmental domain (β = 0.33, p = 0.00). Conclusion: Family burden and family environment are crucial factors in the QoL of caregivers of older adults with chronic diseases. Family and public health nurses should develop interventions to relieve the burden and enhance family environments, ultimately improving caregiver's QoL. [ABSTRACT FROM AUTHOR]

Background: Being a chronic and prevalent disease in older adults, Alzheimer's disease requires extensive and long-term care from caregivers. The disease significantly increases the burden on family caregivers and can cause physical and mental disorders for them, ultimately hindering their ability to provide adequate care for the patients. Objectives: The aim of the present study was to determine the relationship between care burden and health anxiety among the family caregivers of the older adults with Alzheimer's disease. Materials and Methods: A correlational cross-sectional study enrolled 150 family caregivers who had been providing direct care to older adults with Alzheimer's disease for at least six months, chosen by continuous sampling. The study collected data using the Caregiver Burden Inventory (CBI) and Health Anxiety Inventory (HAI-18) at the Iranian Alzheimer's Association in 2021. Data analysis was performed using SPSS software version 25, employing independent t-tests, analysis of variance, and regression analysis. Results: The results indicated that 75 (50%) caregivers had a moderate level of health anxiety, while 43.3% of them reported being anxious about their health to a poor degree. Additionally, 46.6% and 43.3% of caregivers experienced moderate and intense care burden, respectively. Among the other variables studied such as age, sex, level of education, marital status, and economic status, only health anxiety was found to predict the care burden in caregivers of patients with Alzheimer's disease (P < 0.001). (CI95% Health anxiety: 52.80–58.81, CI95% Care burden: 71.89–79.90, R2: 11.9%). Conclusion: Since there is a significant relationship observed between health anxiety and care burden, it is important for health professionals and caregivers of older adults with Alzheimer's disease to prioritize the health of the caregivers. This requires special attention from healthcare providers. [ABSTRACT FROM AUTHOR]

Background: Elder abuse (EA) is a serious public health issue recognized as a healthcare priority. Personality traits can influence social behaviors. This study aimed to determine the prevalence of self-reported domestic EA and its relationship with personality traits of older people and their family caregivers. Methods: A cross-sectional study was conducted in 2022. The research population included older people living in the urban community of the Lorestan Province (in the western region of Iran) selected by multistage cluster sampling. In general, 998 older people and their family caregivers were sampled. The data collection tool was a three-part questionnaire: a. demographic characteristics of the older people, b. questionnaire on the incidence of elder abuse, and c. short version of the NEO Five-Factor Inventory-Revised (NEO-FFI-R) for measuring the personality traits of the older people or family caregivers. The statistical software used was Stata 14. Results: The present study reported that the prevalence of EA at home was 37.78%. In the present study, older age, female gender, unmarried/single status, lower education, unemployment, and rented house characteristics were predictors of EA. High agreeableness, high extroversion, and low neuroticism reduce conflict and tension in older people with their relatives and family, which appear to be protective factors against EA. Conclusion: Policymakers and health experts should prepare training and screening programs to consider these factors so that older people exposed to EA can be identified more quickly and early interventions can be used to improve their health status and increase their quality of life. [ABSTRACT FROM AUTHOR]

Background and Objectives The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. Research Design and Methods A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. Results Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. Discussion and Implications There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time. [ABSTRACT FROM AUTHOR]

Because of aging and rising rates of chronic diseases, the demand for palliative care services is increasing worldwide, and patients need family members to care for them throughout the palliative care process. This study aimed to investigate the experiences of the relatives of palliative care patients during hospitalization. This was a qualitative study conducted with 15 family members. A topic guide was used to conduct semistructured face-to-face interviews. Content analysis was used to analyze the textual data. As a result of the analysis, 3 main themes, 6 categories, and 24 subcategories emerged. The main themes were "reactions to the admission," "feeling obligated to care," and "coping processes." The interviews revealed that most participants had misconceptions and a lack of knowledge about palliative care. Almost all of the family members expressed that they experienced various emotions during this process and had trouble coping. The significant finding of our study is that culture and religious beliefs have a considerable influence on caregiving. A limited number of studies in the literature provide detailed insight into the state of patient relatives. Therefore, this study is critical in guiding palliative care professionals in understanding the requirements of this vulnerable group. [ABSTRACT FROM AUTHOR]

Multimorbidity in older people is strongly linked to the need for acute hospital care, and caregiving activities usually become more complex after patients are discharged from hospital. This may negatively impact the health of close family members, although this has not been comprehensively investigated. This study aimed to explore the general and mental health of close family members caring for frail older (>65) persons recently discharged from acute hospital care, making assessments in terms of gender, relationship to the older person, and aspects of caring. A comparative cross-sectional study was conducted involving 360 close family members caring for frail older persons recently discharged from hospital. The statistical analyses included subgroup comparisons and associations to caring were examined. Half of the family members reported that their general and mental health was poor, with spouses reporting the poorest health. Female participants had significantly more severe anxiety, while males had significantly more severe depression. Providing care for more than six hours per week was associated with poor general health (OR 2.31) and depression (OR 2.59). Feelings of powerless were associated with poor general health (OR 2.63), anxiety (6.95), and depression (3.29). This knowledge may provide healthcare professionals with better tools in order to individualise support, preventing family members from exceeding their resources during these demanding periods. [ABSTRACT FROM AUTHOR]

Aims and objectives: To examine the effectiveness of family‐centred interventions among family caregivers. Background: Family‐centred interventions are an emerging form of intervention that can be effective at improving physical and mental health outcomes for patients and family caregivers. To date, no reviews have examined the effectiveness of family‐centred interventions for family caregivers. Design: A systematic review, including a meta‐analysis, was conducted according to the Preferred Reporting Items for Systematic reviews and Meta‐Analyses (PRISMA 2020) checklist. Methods: Seven English and two Chinese electronic databases were compressively searched from the outset to March 2023. Two researchers independently reviewed the abstracts and full texts, extracted the data and assessed the risk of bias independently by using the Cochrane 'Risk of bias assessment tool'. Results: This systematic review and meta‐analysis included 20 articles. The results of the meta‐analysis showed that family‐centred interventions could significantly improve caregiver burden (p=0.003), quality of life (p = 0.007), depression (p = 0.0002), and stress (p < 0.0001) but not anxiety or family functioning. According to our subgroup analysis, the family‐centred empowerment model (p = 0.009) was superior to the other family intervention (p=0.004) in reducing caregiver burden. Family‐centred interventions are more effective at reducing the burden of caregiving on family caregivers of adolescent patients (SMD=−0.79, 95% CI[−1.22,−0.36], p = 0.0003) than on adult patients (SMD=−0.37, 95% CI [−0.61,−0.12], p = 0.004). Conclusions: Family‐centred interventions could enhance family caregivers' burden, quality of life, stress and depression but had no significant impact on anxiety or family functioning. Relevance to Clinical Practice: Family‐centred interventions have the potential to improve the health status and caregiving burden of family caregivers. Rigorous and high‐quality evidence is needed to confirm the long‐term effects of these interventions on family caregivers. Trial Registration Details: The protocol has been registered in the PROSPERO international prospective register of systematic reviews (Protocol registration ID: CRD42023453607). [ABSTRACT FROM AUTHOR]

Background: Optimizing transitional care by practicing family-centered care might reduce unplanned events for patients who undergo major abdominal cancer surgery. However, it remains unknown whether involving family caregivers in patients' healthcare also has negative consequences for patient safety. This study assessed the safety of family involvement in patients' healthcare by examining the cause of unplanned events in patients who participated in a family involvement program (FIP) after major abdominal cancer surgery. Methods: This is a secondary analysis focusing on the intervention group of a prospective cohort study conducted in the Netherlands. Data were collected from April 2019 to May 2022. Participants in the intervention group were patients who engaged in a FIP. Unplanned events were analyzed, and root causes were identified using the medical version of a prevention- and recovery-information system for monitoring and analysis (PRISMA) that analyses unintended events in healthcare. Unplanned events were compared between patients who received care from family caregivers and patients who received professional at-home care after discharge. A Mann-Whitney U test was used to analyze data. Results: Of the 152 FIP participants, 68 experienced an unplanned event and were included. 112 unplanned events occurred with 145 root causes since some unplanned events had several root causes. Most root causes of unplanned events were patient-related factors (n = 109, 75%), such as patient characteristics and disease-related factors. No root causes due to inadequate healthcare from the family caregiver were identified. Unplanned events did not differ statistically (interquartile range 1–2) (p = 0.35) between patients who received care from trained family caregivers and those who received professional at-home care after discharge. Conclusion: Based on the insights from the root-cause analysis in this prospective multicenter study, it appears that unplanned emergency room visits and hospital readmissions are not related to the active involvement of family caregivers in surgical follow-up care. Moreover, surgical follow-up care by trained family caregivers during hospitalization was not associated with increased rates of unplanned adverse events. Hence, the concept of active family involvement by proficiently trained family caregivers in postoperative care appears safe and feasible for patients undergoing major abdominal surgery. [ABSTRACT FROM AUTHOR]

Aim: To examine the mental health conditions of family caregivers residing away from their loved ones who experienced visitation restrictions during the coronavirus disease 2019 pandemic. Design: A mixed-methods design applying the Kessler Scale-10 for the quantitative measurement of psychological distress and an open-ended question for qualitative analysis. Methods: The participants were recruited from care facilities between February and September 2021. This cross-sectional study included 197 family caregivers who were utilizing formal residential care services for their loved ones. Using thematic analyses, open-ended responses regarding the impact of visitation restrictions were coded. These themes were then examined to determine thematic patterns across caregiver characteristics. Results: Thirteen themes were identified regarding the impact of visitation restrictions. Many participants reported primary harmful effects as follows: ‘inability to confirm the type of care and lifestyle assistance provided to an older relative’ and ‘difficulty communicating with an older relative because of the inability to converse face-to-face’. Younger age, being employed, poor sleep, poor relationship quality with the care recipient and experiencing harmful effects from the visitation restrictions were associated with psychological distress. Conclusion: Our findings suggest that to maintain positive mental health after a care transition, it is important for family caregivers to take part in the care of their loved ones and ensure information sharing between the care recipient's family and institution. Impact: These findings suggest that both residents and family caregivers living outside facilities may feel distressed due to separation. Therefore, institutional care staff needs to consider how to adjust facility procedures or communication with family caregivers. [ABSTRACT FROM AUTHOR]

(1) Background: Living with long-term conditions affects both patients and family caregivers. To obtain a more complete overview of this phenomenon, a measurement instrument is needed that includes both perspectives. The aim is to adapt a scale to family caregivers of individuals with long-term conditions. (2) Methods: A methodological proposal is presented that illustrates the adaptation of the EC-PC scale to the family caregiver. Three phases are proposed: adaptation of the items, panel of experts, and pre-test. (3) Results: In the adaptation phase, the items from the original EC-PC were modified to adapt them to the family caregiver, and new items were added associated with the differences in living with LTC from the perspective of family caregivers. In the panel of experts phase, a universal agreement was reached related to the clarity, relevance, and essentiality of the items included. In the pre-test phase, the content of the scale was verified quantitatively and qualitatively. (4) Conclusions: The content of the items of version 5 of the EC-PC-Family showed a high index of inter-judge agreement. When a phenomenon affects both patients and their environment, such as living with LTC, it is necessary to include both perspectives in the measurement tools. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Nursology is the property of Ataturk University Coordinatorship of Scientific Journals and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Non-pharmacological interventions show promising positive effects on dementia symptoms. Since the majority of dementia care activities are performed by family caregivers, it is important to know how they perceive and implement such approaches. We aimed to investigate the extent to which non-pharmacological interventions are considered by family caregivers in dementia care and the barriers they encounter in implementing them. Methods: A total of 30 family caregivers (mean age: 63.07 years, female: 70%) living inside (30%) and outside the homes (70%) of people with dementia participated. Descriptive data analysis was used to determine the frequency of non-pharmacological interventions implemented, perceived effects, lacking resources, and barriers, while inferential statistics were used to examine whether funding source varied between interventions with high versus low frequency. Results: The most frequently implemented non-pharmacological interventions were initiating/maintaining social contact, cognitively stimulating and rehabilitative activities, and time in nature. In general, enjoyment was the most commonly perceived effect of non-pharmacological interventions. Additional effects were reported with respect to well-being, cognitive decline, autobiographical memory, perception of competence, and other symptoms. Major barriers were organizational burden, accessibility, and a lack of funding. Further, lacking resources included a lack of services (e.g., therapies, transport, group activities) and information on possible interventions. Discussion: This study highlighted that family caregivers frequently implement non-pharmacological interventions in dementia care. Given the perceived positive effects on dementia symptoms, health care interventions are needed that address barriers and provide resources to foster the implementation of non-pharmacological interventions by family caregivers. [ABSTRACT FROM AUTHOR]

Background: Caregivers are responsible for the home care of family members with severe mental illnesses (SMIs) and their lives are often subject to changes that can create stress and burden. The purpose of this study was to explore the current state of family disease burden and its correlation with social support among family caregivers of SMIs patients. Methods: Using a random sampling method, a total of 1,108 family caregivers of SMIs patients in community health service centers were selected. A general information questionnaire of family caregivers and patients, the Family Disease Burden Scale, and the Social Support Rating Scale were used. Results: The score of the Family Disease Burden Scale of 1108 family caregivers was 16.57 ± 10.65. Family disease burden was negatively correlated with social support (p <.05). The main influencing factors of family disease burden were average annual family income, duration of illness, distance to medical care, risk of unpredictable behavior, social support, caregiver-patient relationship, gender, and comorbid chronic conditions (p <.05). Conclusion: Family caregivers of SMIs patients have a relatively low level of caregiver-perceived social support. Interventions to enhance perceived social support could help maintain the health of family caregivers and improve the quality of family care. [ABSTRACT FROM AUTHOR]

Background: Despite being driven by a strong sense of duty and familial obligation, providing care for patients nearing the end of life poses challenges for family caregivers. Telemedicine has rapidly gained traction as a transformative approach to healthcare delivery, offering an array of benefits that could be particularly valuable in end-of-life care. However, research on the perspectives of telemedicine-based services among family caregivers of patients with end-of-life cancer is limited. Therefore, this study aims to explore the perspectives and preferences of telemedicine-based services among family caregivers of patients with end-of-life cancer and provide a framework for developing and executing a tailored telemedicine-based end-of-life care program that addresses the unique needs of family caregivers in mainland China. Method: A descriptive phenomenological approach was used. Family caregivers were selected using purposive sampling at a tertiary cancer hospital. One-on-one semi-structured interviews were conducted with the participants from November to December 2022. Colaizz's method was used to analyze the interviews. Results: Fourteen participants participated in interviews. Three themes and ten subthemes were identified: motivation to receive telemedicine services (relief from the burden of home care; access to professional health care services), supportive care needs for telemedicine services (support for symptom management; negative emotional adjustment; death education; daily life care guidance), and functional expectations of telemedicine service platforms (ease of use; real-time online guidance and response; personalized automatic reminder; targeted matching push of health knowledge). Conclusion: Family caregivers expressed interest in telemedicine-based services and identified various care needs before receiving telemedicine services. The findings of this study can help policymakers and healthcare providers develop more effective and culturally appropriate telemedicine-based service programs that can better support family caregivers of end-of-life cancer patients. [ABSTRACT FROM AUTHOR]

Introduction: Cancer patients in need of palliative care continue to be admitted to surgical services, where nurses are prepared to take care of the surgical patient and not to meet their palliative needs and those of their family. Thus, the need for change emerges, in which the family should be involved in the care and also be considered as a care-receiving unit. Therefore, it is pertinent for nurses to focus their care on the patientfamily dyad in a structured and oriented manner for family-oriented problem-solving. Objectives: To understand the perception of family caregivers about nurses' interventions in caring for cancer patients with palliative care needs; describe family members 'perceptions of nurses' support and availability. Method: A qualitative study using a semi-structured interview with ten relatives of cancer patients in need of palliative care admitted to a surgical service. The results were analyzed through content analysis. Results: Participants considered that the hospital dynamics are centered on healing and that they were not cared for by nurses, thus not having interest in their experiential and existential process. Conclusion: We identified facilitating and hindering factors perceived by the family when a sick member was hospitalized. We believe that the results of this study indicate that a change in nursing practice is necessary, both in terms of helping relationships and in nursing care itself, always bearing in mind that the family must also be cared for. [ABSTRACT FROM AUTHOR]

Down syndrome (DS) is a chromosomal disorder associated with intellectual and physical disabilities and has historically been viewed by health care providers through a negative lens when considering the effect the condition has on the individual, family, and community. The purpose of this scoping review was to provide an overview of recent research concerning adaptation in families of individuals with DS with a focus on family adaptation rather than individual or dyadic adaptation. Three literature indexes were searched from 2017 to 2022, with 41 articles included. Foci of the studies included strength/resilience, stress/coping, and negative/challenge. Thirteen studies reported using a family framework. Multiple methodological approaches and family measures were used in the studies and are outlined. Findings from this review show there has been a shift in focus when researching families of individuals with DS from a negative and challenging experience to one of strength and resilience. [ABSTRACT FROM AUTHOR]

Copyright of Enfermagem Brasil is the property of Atlantica Editora and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Specialist palliative care (SPC) includes care for incurably ill patients and their family caregivers at home or on a palliative care ward until the very end of life. However, in the last days of life, patients can rarely express their needs and little is known about SPC outcomes as reported by multiprofessional SPC teams and family caregivers. Methods: Using the Palliative Care Outcome Scale (POS; Score 0–40), proxy assessments of SPC outcomes in the patient's last 3 days of life were performed by SPC teams and primary family caregivers of three home care and three inpatient services. Additional questions were asked about problems solved 'particularly well' or 'inadequately' (last 7 days), which were content analyzed and quantified. Results: Proxy assessments by SPC teams were available in 142 patients (of whom 51% had died at home). Family caregiver assessments exist for a subgroup of 60 of these patients. SPC teams (POS total score: mean 13.8, SD 6.3) reported SPC outcomes slightly better than family caregivers (mean 16.7, SD 6.8). The POS items consistently rated as least affected (= 0) by both, SPC teams and family caregivers, were 'not wasted time' (team 99%/family caregivers 87%), 'information' (84%/47%) and 'support' (53%/31%). Items rated as most affected (= 4) were 'patient anxiety' (31%/51%), 'life not worthwhile' (26%/35%) and 'no self-worth' (19%/30%). Both groups indicated more problems solved 'particularly well' than 'inadequately'; the latter concerned mainly clinically well-known challenges during end-of-life care and family caregiver care. Conclusions: This study shows the range and type of symptoms and other concerns reported in the patient's last days. Starting points for further improvements in family caregiver care and psychosocial and spiritual issues were identified. [ABSTRACT FROM AUTHOR]

The aim of the current study was to investigate the health-related quality of life (HRQol) of the family caregiver in MCI, explore possible determinants and study possible differences with mild dementia. This secondary data analysis included 145 persons with MCI and 154 persons with dementia and their family caregivers from two Dutch cohort studies. HRQoL was measured with the VAS of the EuroQol-5D-3L version. Regressions analyses were conducted to examine potential demographic and clinical determinants of the caregiver's HRQoL. The mean EQ5D-VAS in family caregivers of persons with MCI was 81.1 (SD 15.7), and did not significantly differ from family caregivers in mild dementia (81.9 (SD 13.0)). In MCI, patient measurements were not significantly associated with caregiver mean EQ5D-VAS. Concerning caregiver characteristics, being a spouse and a lower educational level were associated with a lower mean EQ5D-VAS (in a multiple linear regression model: unstandardized B −8.075, p = 0.013 and unstandardized B −6.162, p = 0.037 resp.). In mild dementia, the NPI item irritability showed an association with caregiver EQ5D-VAS in bivariate linear regression analyses. Results indicate that especially family caregiver characteristics seem to influence family caregiver HRQoL in MCI. Future research should include other potential determinants such as burden, coping strategies and relationship quality. [ABSTRACT FROM AUTHOR]

Introduction: Immigrant family caregivers are increasing worldwide, likewise the number of older people with dementia. Caring for a person with dementia is demanding, with the carer's own life put on hold. Immigrant family caregivers have been less studied. Therefore, the aim of this study was to explore immigrant family caregivers' experiences of living with an older person with dementia. Method: A qualitative approach was chosen, consisting of open‐ended interviews analysed using qualitative content analysis. The ethical principles of the Helsinki Declaration were applied in the study, which was duly approved by a regional ethics review board. Results: The content analysis resulted in three main categories: (i) the diverse roles of a family caregiver; (ii) the impact of language and culture on daily life and (iii) wish for support from society. Conclusions: Living with a person with dementia is demanding and burdensome and the consequences of working without any rest may increase social isolation and impair quality of life. Immigrants and country‐born family caregivers living with a person with dementia seem to have similar care experiences, but immigrant family caregivers seem to receive help rather late due to a lack of information about the services available, language barriers and to financial reasons. A wish for support earlier on in the caring process was expressed, likewise for care services in the participants' native language. The various Finnish associations and peer support were important sources of information about support services. Together with culturally adjusted care services, these could contribute to better access to care, to quality and to equal care. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To examine the relationships among family caregiver burden and workplace productivity and activity impairment among home hospice family caregivers of individuals with cancer who worked while providing end-of-life caregiving. SAMPLE & SETTING: Baseline data from a longitudinal study of communication between hospice providers and hospice family caregivers were used for this secondary analysis. METHODS & VARIABLES: Working family caregivers with complete workplace productivity and activity impairment data were included in this analysis (N = 30). Demographic data, caregiver burden, and workplace productivity and activity impairment were examined with descriptive statistics, correlation analysis, and hierarchical linear regressions. RESULTS: Hospice family caregivers were primarily White, female, married, and employed full-time. Caregiver burden levels were significantly positively associated with activity impairment, presenteeism, and work productivity loss. These relationships remained statistically significant when controlling for age. IMPLICATIONS FOR NURSING: Hospice and oncology nurses can support working hospice family caregivers by assessing for burden and associated workplace challenges, as well as by providing referrals for respite and community resources. [ABSTRACT FROM AUTHOR]

Background: As federal and state policies rebalance long‐term care from institutional settings to home‐ and community‐based settings, reliance on formal (paid) and family (unpaid) caregivers for support at home nationally has increased in recent years. Yet, it is unknown if use of formal and family care varies by rurality. Methods: Using the Health and Retirement Study, we describe patterns in receipt of combinations of formal and family home care and self‐reported expectation of nursing home use by rurality among community‐dwelling adults aged 65+ with functional limitations from 2004 to 2016. Results: Older adults residing in rural areas are more likely to receive any family care than those in urban areas. From 2004 to 2016, a higher proportion of older adults in rural areas receive care from family caregivers exclusively while a lower proportion receive care from formal caregivers exclusively. When examining older adults in urban areas, we find the opposite — a higher proportion of urban adults rely exclusively on formal care and a lower proportion rely exclusively on family care in 2016 compared to 2004. Conclusion: We find that national estimates of sources of caregiving and their changes over time mask significant heterogeneity in uptake by rurality. Understanding how older adults in rural areas are, or are not, receiving home‐based care compared to their urban peers and how these patterns are changing over time is the first step to informing supports for family and formal caregivers. [ABSTRACT FROM AUTHOR]

Introduction: Family functioning, particularly among primary family caregivers for patients with schizophrenia, is a global concern that poses unprecedented challenges. The family unit is a pivotal agent for the preservation of the integrity of individual members. Little attention has been paid to the changes in family functioning and their predictors in primary family caregivers. This study aimed to examine the changes in and the correlates of family functioning in primary family caregivers of individuals with schizophrenia over a 6‐month post‐discharge period. Design: A prospective, longitudinal study was conducted. Methods: A total of 58 primary family caregivers of patients with schizophrenia were recruited from two psychiatric hospitals in Taiwan. Data were collected four times, including 1 week before hospital discharge and at 1‐, 3‐, and 6‐month intervals post‐discharge. Demographic and clinical questionnaires, the Affiliate Stigma Scale, the Family Empowerment Scale, and the General Functioning subscale were used to collect data. Generalized Estimating Equations were applied for data analysis. Results: Approximately 59.6%–77.6% of primary family caregivers presented unhealthy family functioning during the 6‐month post‐discharge period. Significant reductions in family functioning of primary family caregivers were noted in the group with unhealthy family functioning; however, family functioning of primary family caregivers remained unchanged in the group with healthy family functioning over 6 months. Affiliate stigma and family empowerment significantly accounted for the changes in family functioning of primary family caregivers in the groups with unhealthy and healthy family functioning, respectively. Conclusion: This study highlights affiliate stigma and family empowerment as long‐term predictors of changes in family functioning for primary family caregivers and as pivotal targets of mental health care. Clinical Relevance: Family‐centered interventions with a focus on ameliorating affiliate stigma and enhancing family empowerment are recommended to improve family functioning for primary family caregivers of patients with schizophrenia at different periods after hospital discharge. [ABSTRACT FROM AUTHOR]

Aim: To explore the beliefs of family caregivers on adherence to Anti‐Retroviral Therapy (ART) among children living with HIV/AIDS that received care at St. Joseph's Hospital, Jirapa, Ghana. Design: A qualitative phenomenological design was employed for this study. Method: Data was gathered using a semi‐structured in‐depth interview guide from 13 family caregivers of children with HIV/AIDS on ART. Analysis was done using the reflexive thematic analysis approach. Results: Three major themes were generated during the analysis: "Beliefs regarding the effectiveness of ART"; "Beliefs regarding taking ART"; and "Beliefs regarding other treatments for HIV/AIDS". Most caregivers believed that the ARTs were effective and improved their children's health, especially when adhered to strictly. Some, however, believed in praying to God for healing, and the use of local/herbal to augment ARTs. Conclusion: Family caregivers generally hold positive beliefs about ARTs and its effectiveness for their children. Some, however, believe in spirits, prayers, and herbal/local treatment in addition to ARTs. [ABSTRACT FROM AUTHOR]

Background: Hospice family caregiving is often physically and emotionally taxing, but it is unclear how employment status impacts hospice caregiver burden and well-being. Objective(s): To examine the relationship between caregiver burden and well-being, and the moderating role of employment status (i.e., working, not working). Design, Setting/Subjects: This was a secondary data analysis of baseline data from a longitudinal observational study of family caregivers of home hospice cancer patients in the United States. Descriptive statistics, correlations, hierarchical linear regressions, and moderation analyses were used. Measurements: Baseline data included demographics, preparedness for caregiving, perceived burden, and well-being (i.e., global health, positive affect and well-being, anxiety, depression). Results: The majority of the 90 participants were White (86.7%), married (71.1%), and college educated (85.6%). The mean age was 58.27 ± 14.22, 53.3% cared for a spouse, and 56.6% worked full or part time. After controlling for demographics, and using employment status as a moderator, greater caregiver burden was significantly associated with lower global health (β = −0.82 [−1.22 to −0.42], p < 0.001), positive affect and well-being scores (β = −0.69 [−1.03 to −0.36], p < 0.001), and higher depression (β = 0.24 [0.12–0.37], p < 0.001) and anxiety scores (β = 0.22 [0.07–0.37], p < 0.005). Employment status significantly moderated the relationship between burden and global health (β = 0.65 [0.22 to 1.08], p < 0.005), and burden and positive affect and well-being (β = 0.45 [0.06 to 0.84], p < 0.05). At high levels of burden, workers had greater well-being than nonworkers. Conclusion(s): More burdened hospice caregivers may experience worse well-being, especially among nonworking caregivers. Employment may be a protective factor for highly burdened hospice family caregivers. [ABSTRACT FROM AUTHOR]

This study a utilized phenomenological hermeneutic design. Fourteen Iranian family caregivers of patients with COVID-19 who were isolated at home were included in the study using purposive sampling. In-depth unstructured interviews were conducted via WhatsApp. Sampling continued until data saturation. Interviews were transcribed and analyzed using Van Manen's approach. Three primary themes and eight subthemes emerged. The primary themes included: "captured in a whirlpool of time", "resilient care' and "feeling helpless". It seems that the families of patients with COVID-19 attempt to resist the pressures of this disease with religious practices and problem solving. However, due to the nature of the disease and its severity, they sometimes feel ashamed or lonely and are afraid of losing their loved ones. It is recommended that psychiatric nurses should develop programs in the form of comprehensive spiritual care packages or psychological support and utilize multiple media channels to deliver these. [ABSTRACT FROM AUTHOR]

Aim: To understand whether the sleep quality of the caregivers of elderly inpatients is associated with their own characteristics and with the characteristics or sleep quality of the elderly inpatients. Design: A cross‐sectional study design that recruited participants from September to December 2020 was adopted, in which 106 pairs of elderly inpatients and caregivers were recruited. Methods: Data collected from the elderly inpatients included demographic characteristics as well as the numerical rating scale (NRS) score, Charlson Comorbidity Index (CCI), Geriatric Depression Scale Short Form (GDS‐SF) score, and Pittsburgh Sleep Quality Index (PSQI). Caregiver data included demographic characteristics and PSQI. Results: In the regression analysis of caregiver characteristics and caregiver sleep quality, only caregiver age and the relationship between caregiver and inpatient (other vs. spouse) were correlated with caregiver sleep quality. In the regression analysis of elderly inpatient characteristics, caregiver characteristics, and caregiver sleep quality, only the PSQI of elderly inpatients and the relationship between caregiver and inpatient (other vs. spouse) were correlated with caregiver sleep quality. Patient or Public Contribution: Poor caregiver sleep quality was more likely to manifest when the elderly inpatients had poor sleep quality, when the caregivers themselves were older, and when the caregiver was the inpatient's spouse. [ABSTRACT FROM AUTHOR]

Aim: The aim was to understand the lived experiences of family caregivers caring for a dying patient at home. Design: A qualitative phenomenological approach was used. Methods: Data were collected between September and December 2018. Data collection was took the form of in-depth interviews with family caregivers (n = 4), followed by the use of interpretative phenomenological analysis (IPA). Results: Five main themes were identified in terms of which family caregivers described their experience: the Role of caregiver; I’ll do everything for him / her; Support; “Time out” after death; and Benefits of care. The family caregivers had to establish their new caregiver roles, often they were the mainstay of the whole family. In the various areas of care they did everything for the dying person. They experienced pain, mental and physical burdens, and doubts, and spirituality was vital to them. It was important to experience support from different sources. After this experience, the caregivers needed time to release emotions after the death. Overall, the caregivers came to regard this experience as beneficial: revealing other priorities, increasing time spent with family, clarifying relationships, and changing attitudes and values. Conclusion: The study offers a unique insight into family caregivers’ experiences in the Czech Republic. In confirmation of previous results, experiences are generally similar for all caregivers and point to a need for significant improvement in the quality of support and assistance from health professionals and support from family members, particularly in the areas of practical demonstration of care, the expression of condolences, provision of pain medication, handling of formalities related to the death of a loved one (e.g., when arranging the death certificate and widow’s pension), and the sharing of emotions as they occur. [ABSTRACT FROM AUTHOR]

Objectives: Dementia is a growing health concern. Persons with dementia experience higher levels of anxiety and depression, which correlates with poorer quality of life, disability and hospitalization. This is one of the few studies to use a longitudinal design to assess the impact of expressed emotion (EE) on well‐being in dementia over time. Methods: Sixty‐one people with dementia and their main informal caregiver were recruited from memory services. Caregiver EE was coded from a Camberwell Family Interview conducted at time one. Person with dementia's outcome measures (quality of life, depression and anxiety) were collected at time one and at 6‐months follow‐up. Results: Caregiver high EE was associated with higher levels of depression in people with dementia and greater anxiety at follow‐up. Emotional over involvement predicted greater anxiety and critical comments predicted greater depression. Low EE appeared to have a protective effect on well‐being in people with dementia. People with dementia with low EE caregivers experienced a small reduction in depression and anxiety over time, whereas those with high‐EE caregivers maintained baseline levels of depression and anxiety. Conclusions: Caregiver high EE is associated with poorer psychological outcomes for people with dementia over time. Psychological therapies, such as cognitive behavioural therapy informed family interventions should be used to reduce high EE within carer and person with dementia relationships. [ABSTRACT FROM AUTHOR]

Copyright of RIIS: Revista de Investigação & Inovação em Saúde is the property of RIIS: Revista de Investigacao & Inovacao em Saude and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Oral cancer is currently the fourth leading cause of cancer-related death in Taiwan. The complications and side effects of oral cancer treatment cause a tremendous burden on patients' family caregivers. This study explored the burden on primary family caregivers of patients with oral cancer and its related factors. One hundred and seven patients with oral cancer and their primary family caregivers were included through convenience sampling. The Caregiver Reaction Assessment (CRA) scale was employed as the primary research instrument. The primary factors of caregiver burden, in descending order, were disrupted schedules (M = 3.19, SD = 0.84), a lack of family support (M = 2.82, SD = 0.85), health problems (M = 2.67, SD = 0.68), and financial problems (M = 2.59, SD = 0.84). The CRA scores of the caregivers differed significantly in terms of education level (t = 2.57, p < 0.05) and household income (F = 4.62, p < 0.05), which significantly predicted caregiver burden (R2 = 0.11, F = 4.32, p = 0.007). The study results provide a reference for healthcare professionals to identify the factors for family caregiver burden, as well as the characteristics of patients and family caregivers particularly vulnerable to caregiver burden, thus improving family-centred care. [ABSTRACT FROM AUTHOR]

Background: Caring for people with dementia generates stress among family caregivers. One of these stressor events is ambiguous loss. Objectives: To translate, adapt, and validate the Boundary Ambiguity Scale (BAS) into European Portuguese and assess its psychometric properties. Methodology: Methodological study with a sample of 88 family caregivers of people with dementia. Internal consistency was assessed using McDonald's omega coefficient (ω). Construct validity was assessed through exploratory factor analysis (EFA) and criterion validity through the Perceived Stress Scale (PSS). Results: The BAS showed excellent content validity. The EFA revealed a two-factor model, explaining 44% of variance, and a ω of 0.72. Family caregivers who live with people with dementia had greater ambiguous loss (t = 2.823, p < 0.01). A statistically significant moderate positive correlation was found between the BAS and the PSS (rs = 0.578, p < 0.01). Conclusion: The BAS has acceptable validity and internal consistency for assessing ambiguous loss. [ABSTRACT FROM AUTHOR]

Aim and Objectives: To assess (1) the experience, knowledge and preferences of end‐of‐life care among frail nursing home residents and (2) the preferences of residents' family caregivers. Background: Globally, nursing homes are becoming an important place where many older people will receive their end‐of‐life care. Thus, assessing the end‐of‐life care preferences among nursing home residents is crucial. Design: Cross‐sectional survey. Methods: Residents aged ≥65 years, with frail or pre‐frail status (n = 286) in 34 nursing homes were interviewed using a structured questionnaire. Descriptive statistics were used to describe the outcomes and regression analyses were used to evaluate factors related to the outcomes. Kappa statistics were used to examine the agreement between the preferences among 21 residents and their family caregivers. The manuscript was guided by the STROBE checklist. Results: 5.9% and 10.5% of the participants had heard of advance care planning and advance directive respectively. After explanations of the terms by the research team, 42.3% of the participants preferred advance care planning, whereas 22.0% preferred advance directive. The top reason for not preferring advance care planning/advance directive is perceiving them as 'not necessary'. Nursing homes were the most preferred place to receive end‐of‐life care (41.6%). Whereas hospitals were the most preferred place for death (36.0%). The agreement among resident and family caregiver dyads ranged from none to minimal in most outcomes. Conclusions: This study revealed the lack of awareness around advance care planning and advance directive among frail nursing home residents. Future research should focus on developing effective educational interventions to enhance the residents' awareness of these topics. Relevance to clinical practice: To increase awareness among nursing home residents, more educational programs should be implemented. Frail older residents might not see the relevance of advance care planning; interventions need to include both current and future care to increase its relevance. [ABSTRACT FROM AUTHOR]