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Background: The outpatient palliative care system is a central component of the palliative care structure in Germany, with family caregivers playing a vital role in ensuring and maintaining its success. However, crisis situations can destabilise and harm outpatient care. Previous studies have analysed hospitalisations and emergency admissions during palliative care. However, little is known about the factors that contribute to the emergence of crises in palliative outpatient care. The aim of this study was to identify factors contributing to the emergence of crisis in palliative outpatient care including the identification of protective strategies. Methods: A qualitative study using semi-structured interviews with family caregivers recently involved in outpatient palliative care was performed. The analysis was conducted using thematic coding. Results: A total of 15 family caregivers (13 female and 2 male) were recruited for the study. Crisis situations emerged through a cumulation of factors. Four categories of factors were identified: (1) structural factors, including limited access to health care professionals and a lack of necessary information, (2) illness related factors such as sudden progression in the illness trajectory and symptoms, (3) the intensity of care involvement and (4) emotional and psychological burden of family caregivers. A diverse range of protective strategies were employed by family caregivers, encompassing the involvement of the social network, the pursuit of information and the identification of a sense of purpose. Conclusion: The findings of this study confirm the importance of providing continuous, competent, and empathetic care to both family caregivers and patients in palliative outpatient care. The study highlights the importance of expanding the palliative care infrastructure, as well as ensuring unrestricted access to palliative care professionals, developing tailored information tools for family caregivers, and reducing bureaucracy. Further studies are needed to identify additional influencing factors and evaluate effective measures. [ABSTRACT FROM AUTHOR]

Purpose: The Chinese community constitutes the largest demographic and faces the highest rates of cancer incidence in Singapore. Given this, palliative care plays a crucial role in supporting individuals, particularly those nearing the end of life, with family serving as their primary source of support. Many Chinese family caregivers in Singapore reported significant unmet needs in cancer care provision, with studies indicating that they often bear the brunt of caregiving responsibilities. Despite this, there has been a lack of research exploring the needs and perspectives of Chinese Singaporean family caregivers caring for terminally ill cancer patients at home. Thus, this study seeks to address this gap by investigating the lived experiences of Chinese Singaporean family caregivers providing end-of-life cancer care in a home setting. Methods: This study employed a hermeneutic phenomenological approach, guided by the framework developed by van Manen (1990), to uncover the essential meaning of each participant’s lived experience. In-depth, semi-structured virtual interviews were conducted face-to-face with ten Chinese Singaporean family caregivers. These caregivers shared their personal journeys of caring for a loved one with advanced cancer during their final stage of life at home. The interviews were audio recorded, and open-ended questions were used to facilitate discussion. Each interview lasted between 30 and 60 min. The principal investigator manually transcribed all audio recordings. Additionally, an external transcriber translated the interviews into written form to ensure accuracy and authenticity. The interview texts were then analyzed and interpreted using the philosophical underpinnings rooted in phenomenology. Results: The attempts to identify meanings and make sense of the Chinese Singaporean’s lived experience led to the development of two main themes and eight sub-themes. Under the primary theme of “experiences from caregiving” comprises the sub-themes “being a caregiver,” “suffering,” and “well-being,” and the major theme of “expectations in caregiving” encompasses the sub-themes “caregiving support,” “decision-making,” “communication,” “spirituality,” and “being a Chinese Singaporean”. Conclusion: In conclusion, addressing family caregivers’ needs requires culturally sensitive nursing education, peer support initiatives, public awareness campaigns, and enhanced training for domestic helpers. These measures, coupled with further research into diverse cultural caregiving needs and male caregivers’ experiences, will improve support systems and empower caregivers in their essential roles. [ABSTRACT FROM AUTHOR]

Our phenomenal experience of the world is shaped by lived moments of the present, which not only sediment into the fabric of our current reality but also actively contribute to shaping it. We continually engage in the generative and rich making of life through this ongoing, dynamic interaction with the world. From this perspective, body–mind differences resulting from brain injury could be seen as a profound transformation of one's phenomenal experience of the world. The lessons I have drawn from my caregiving experience with my sister who has critical brain injuries highlight the need to move away from ableist beliefs that disabilities are deficits to be corrected or rejected to a positive and generative search for the new, alternative ways of living well with shifted physio-psychological conditions. Using phenomenological perspectives, I aim to shift the understanding of "abnormality" from the binary of normal/abnormal to a broader vision of care. For family caregivers who struggle to help their loved one to return to a better state of health and life quality, the key point of participating in the recovery process is to gear into the lived experience of the care recipient and grasp a genuine understanding of their reality. [ABSTRACT FROM AUTHOR]

Background: Long-term care of patients with schizophrenia, which creates a burden of care, leads to disruption in interactions, social and personal relationships, changes in lifestyle, and shifts in the roles of family members. This study aimed to explore the lived experiences of family caregivers who are caring for a family member with schizophrenia within the Baloch ethnicity. Methods: This is a qualitative study, using a descriptive phenomenological approach. A total of fifteen family caregivers of patients with schizophrenia participated in the study. Data were collected by a semi-structured interview. Results: Twenty-one categories, seven sub-themes and one theme were extracted. "Putting the broken pieces of life together" was the main theme with sub-themes of "Ignorance confrontation", "Schizophrenia acceptance process", "Restoring a chaotic context with human and non-human approaches", "Support seeking", "Escaping from stigma", "Roles restoring", and "Lifelong caring". Conclusions: For a family with a member with schizophrenia, restoring family life is a top priority. However, schizophrenia is so debilitating and destructive that it threatens not only the peace of the family but also the survival of the family, and it requires constant effort and complete support to restore and maintain life. [ABSTRACT FROM AUTHOR]

China's rapidly aging population necessitates a sustainable social care system. Although the majority of Chinese disabled older adults live in their communities, the utilization rate of home- and community-based care (HCBC) services has been low. Moreover, family members still take the main responsibility for the care of disabled older persons and generally suffer from the stress of caregiving. To increase the use of HCBC services by disabled elderly families, this study examined which individual characteristics of both elderly individuals and their primary family caregivers were related to HCBC service use among disabled urban elderly individuals in a regional sample from the 2018 to 2019 Beijing Precise Assistance Need Survey (n = 34,153). Logistic regression was used as the baseline model, and a simultaneous equation model was established to address the jointly dependent variables. The results show that the degree of disability of disabled older adults has no significant effect on their service use, whereas their worse health status played a significant role in predicting respite care service use. Working status, a longer period of caregiving, and poor health of caregivers all significantly predict a greater likelihood of service use by elderly individuals. Caregivers with burdened feelings predicted a decrease in the likelihood of elderly individuals using services. Our findings show that primary family caregivers have an important influence on disabled elderly people's use of HCBC services, but service use is more likely to compensate for the lack of care and expertise provided by family caregivers than to reduce caregivers' caregiving burden. [ABSTRACT FROM AUTHOR]

Background: Family caregivers are central to the delivery of serious illness care and also have needs related to their role and experience. One aspect of the family caregiver quality of life (QOL) that has received less attention is caregiver spirituality. Objectives: The research objectives for this analysis were (1) Describe spirituality in oncology family caregivers. (2) Determine the impact of palliative care interventions on spirituality and related variables in oncology family caregivers. (3) Describe findings from the research literature related to spirituality in family caregivers. The authors include two nurse researchers (BF, TB) and a physician (MK) who conducted these studies and a board-certified chaplain (PG) who contributed his expertise in chaplaincy. Design: This study synthesized data from seven earlier studies by the investigators from their research in family caregiving and also compared findings to the literature. Setting/Subjects: Subjects were family caregivers (n = 1039) of patients with cancer from studies conducted primarily in the Western United States. Measurements: The key spirituality instruments used were the Functional Assessment of Chronic Illness Therapy tool and the City of Hope QOL tool. Results: Spirituality was identified as important to family caregivers and most caregivers reported a religious affiliation. Living with uncertainty was consistently reported as the worst aspect of QOL/spirituality. Having a sense of purpose and meaning was the highest rated area. Conclusions: The authors' research synthesis and the literature support the importance of additional research and clinical focus in family caregiver spirituality in serious illness care. [ABSTRACT FROM AUTHOR]

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]

ABSTRACT Aims Design Methods Results Conclusion Reporting Method Patient or Public contribution Protocol Registration Caution around the COVID‐19 pandemic resulted in visitation restrictions to prevent the spread of the virus among vulnerable older persons living in long‐term care (LTC), which posed a threat to individual well‐being and family togetherness across the globe. The purpose of this study was to explore family caregiver's experience of having a person who is living with dementia residing in a long‐term care facility during the COVID‐19 pandemic.Qualitative descriptive study using constructivist grounded theory (GT) methodology.The study was carried out in five countries: the United States, Switzerland, Hong Kong (China), United Kingdom and Japan. Data were collected between June 2021 and August 2022. In‐depth understanding and initial theorising about experiences and social interactions between family members, residents and long‐term care staff across cultural contexts, strategies from constructive GT were used. Data were collected through 15 semi‐structured, in‐depth interviews with 16 family members. Analysis included individual and team‐based coding, memo‐writing, constant comparison and category generation.Due to visit restrictions, families faced upsetting situations of exclusion. The caregiver participants experienced inequality, felt isolated and witnessed residents' despair and helplessness. Analysis revealed four subthemes to the basic social process of ‘negotiating for access to maintain relational continuity’: (1) Feeling excluded, isolated and upset; (2) facing depersonalising situations; (3) navigating challenging interactions; and (4) living with (post‐) pandemic circumstances.This study highlights the suffering experienced by family caregivers and their loved ones living with dementia in long‐term care during COVID‐19, demonstrating the key role that relationships play in family care. During similar public health crises, policies and infection prevention measures that depict family and close caregivers as visitors whose access needs to be regulated need to be altered into policies that enable a culture of partnership and inclusion acknowledging the importance of social interactions for health and well‐being.The COREQ checklist was followed.No patient or public contribution.Not applicable due to study design. [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]

Objective: To investigate the feasibility, acceptability, and clinical outcome measures of a transitional care intervention for patients with traumatic brain injury (TBI) and their family caregivers. Setting: Inpatient and outpatient rehabilitation at a level I trauma center in the Southeastern United States. Participants: Patients (ages 18-75) diagnosed with moderate to severe TBI, receiving rehabilitation, and their family caregivers. Design: Quasi-experimental, single-arm, single-center feasibility study with pre- and post-test design. Participants completed a 4-month transitional care program involving monthly education and social support. Main measures: Feasibility of enrollment, data collection, intervention completion rates, and intervention acceptability. Clinical outcome measures included patient quality of life (QOL) (12-Item Short Form Health Survey (SF-12), primary outcome) and patient and caregiver self-efficacy (Self-Efficacy for Management of Chronic Conditions Scale). Results: Eleven dyads and 1 monad enrolled (N = 23, 12 patients, 11 caregivers). All completed baseline data; 91.3% (n = 21, 11 patients, 10 caregivers) completed 2-month (intervention midpoint) data; and 86% (n = 20, 11 patients, 9 caregivers) completed 4-month (intervention endpoint) data. The intervention completion rate was 91.67%. Participants engaged in a mean of 2.17 (SD = 1.34) monthly educational webinars and 2.42 (SD = 1.51) social support groups during the intervention period. Approximately 70% of participants (n = 16, 9 patients, 7 caregivers) completed acceptability data, indicating positive intervention experiences (patients: mean 9.44/10 [SD = 1.01]; caregivers: mean 9.57/10 [SD = 0.79]). Patient QOL scores did not statistically improve over time; however, patient self-efficacy scores did statistically significantly improve from baseline (mean = 7.03, SD = 1.53; P = .0197) to intervention end point (4 months) (mean = 8.35, SD = 1.71). Conclusion: Brain Injury Support To Optimize Recovering Minds (BrainSTORM) is a promising new TBI transitional care intervention that has potential to enhance care standards for patients with TBI and their family caregivers. Further research is needed to determine its efficacy. [ABSTRACT FROM AUTHOR]

Background: Family caregivers play a crucial role in supporting patients with incurable diseases, but often experience significant stress and anxiety. This study aimed to investigate the impact of psychological interventions on family caregivers, with a focus on reducing the burden of care, improving mental health and quality of life, and promoting family communication. Method: This study conducted a brief overview of quantitative and qualitative research on assessing the impact of psychological interventions on family caregivers. A comprehensive literature search was conducted in PUBMED, SCOPUS, EMBASE, SCIENCE DIRECT and WEB OF SCIENCE to identify relevant papers, resulting in 20 articles being included. The included studies focused on evaluating the outcomes of psychological interventions on family caregivers. Result: Ultimately, 20 relevant articles were retrieved from a pool of 500 articles, focusing on the evaluation of the primary outcomes of psychological interventions on family caregivers. The review of 20 articles revealed that interventions such as expressive writing and reminiscence therapy had a positive and significant impact on reducing the burden of care and fostering a positive care environment. Additionally, these interventions were found to be effective in improving self-esteem, family communication, and overall wellbeing. Conclusion: The study emphasizes the need for further research to confirm the benefits of these interventions and their role in promoting family resilience. These findings highlight the potential of psychological interventions in alleviating the challenges faced by family caregivers of patients with incurable diseases. [ABSTRACT FROM AUTHOR]

ABSTRACT There are considerable methodological and emotional challenges conducting research on family caregivers of end‐of‐life patients. In this article, we identified the major challenges encountered while studying a group of Chinese immigrant family caregivers of terminally ill patients. Drawing upon the concept of reflexivity and building on the previous literature, two types of reflexivity, self‐reflexivity and co‐reflexivity, were introduced and incorporated into a research process. It is argued that co‐reflexivity, where co‐researchers engaging in reflexive dialogues, can be an essential component to a process of reflexive activities, in addition to self‐reflexivity. During the journey of designing and applying this incorporated process, we were able to manage ethical, methodological and emotional challenges, to gain in‐depth and critical interpretations of the participant's narratives, to mitigate researcher biases, and to inspire new ideas for future research. We argue this process may serve as a working structure for exercising reflexivity within a small multidisciplinary/cross‐functional research team. It can be an unfinalized research method tool open for other researchers to adapt, revise and re‐create for their own implementation. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to construct a network analysis model for benefit finding (BF) and caregiving abilities to clarify the interrelationships and mutual influences among different dimensions and propose nursing strategies. Methods: Convenience sampling was used to select 272 family caregivers of patients with lung cancer admitted to a tertiary hospital in Guangzhou City, China, from April 2023 to November 2023. Socio-demographic and disease characteristics questionnaire, the revised BF Scale, and the Family Caregiver Task Inventory (FCTI) were used for data collection. The R software was used to construct networks for BF and caregiving abilities, and network analysis methods were employed to identify network characteristics, core nodes, and bridge nodes. Results: In the overall network, the social relationship dimension (rs = 3.04) exhibited the highest strength centrality index, followed by the family relationship dimension (rs = 2.94). In addition, the social relationship dimension (rbs = 0.30) had the highest bridge strength centrality index, followed by the dimension of addressing personal emotional needs (rbs = 0.26). Conclusion: This study provides a new perspective on exploring the underlying mechanisms of interaction among different dimensions of BF and caregiving abilities in family caregivers of patients with lung cancer using network analysis. The findings suggest that healthcare professionals can improve family caregivers' social relationships, family relationships and address emotion regulation to enhance BF and caregiving abilities. Specific nursing strategies are proposed, offering new intervention targets for enhancing BF and caregiving abilities among family caregivers of patients with lung cancer. [ABSTRACT FROM AUTHOR]

Objective: To assess whether a team collaboration strategy (CONNECT) improves implementation outcomes of a family caregiver skills training program (iHI‐FIVES). Data Sources and Study Setting: iHI‐FIVES was delivered to caregivers at eight Veterans Affairs (VA) medical centers. Data sources were electronic health records, staff surveys, and interviews. Study Design: In a stepped wedge cluster randomized trial, sites were randomized to a 6‐month time interval start date for iHI‐FIVES launch. Sites were then randomized 1:1 to either (i) CONNECT, a team collaboration training strategy plus Replicating Effective Programs (REP), brief technical support training for staff, or (ii) REP only (non‐CONNECT arm). Implementation outcomes included reach (proportion of eligible caregivers enrolled) and fidelity (proportion of expected trainings delivered). Staff interviews and surveys assessed team function including communication, implementation experience, and their relation to CONNECT and iHI‐FIVES implementation outcomes. Data Collection/Extraction Methods: The sample for assessing implementation outcomes included 571 Veterans referred to VA home‐ and community‐based services and their family caregivers eligible for iHI‐FIVES. Prior to iHI‐FIVES launch, staff completed 65 surveys and 62 interviews. After the start of iHI‐FIVES, staff completed 52 surveys and 38 interviews. Mixed methods evaluated reach and fidelity by arm. Principal Findings: Fidelity was high overall with 88% of expected iHI‐FIVES trainings delivered, and higher among REP only (non‐CONNECT) compared with CONNECT sites (95% vs. 80%). Reach was 18% (average proportion of reach across eight sites) and higher among non‐CONNECT compared with CONNECT sites (22% vs. 14%). Qualitative interviews revealed strong leadership support at high‐reach sites. CONNECT did not influence self‐reported team function. Conclusions: A team collaboration strategy (CONNECT), added to REP, required more resources to implement iHI‐FIVES than REP only and did not substantially enhance reach or fidelity. Leadership support was a key condition of implementation success and may be an important factor for improving iHI‐FIVES reach with national expansion. [ABSTRACT FROM AUTHOR]

Objective: To assess the effects of an evidence‐based family caregiver training program (implementation of Helping Invested Families Improve Veteran Experiences Study [iHI‐FIVES]) in the Veterans Affairs healthcare system on Veteran days not at home and family caregiver well‐being. Data Sources and Study Setting: Participants included Veterans referred to home‐ and community‐based services with an identified caregiver across 8 medical centers and confirmed family caregivers of eligible Veterans. Study Design: In a stepped wedge cluster randomized trial, sites were randomized to a 6‐month time interval for starting iHI‐FIVES and received standardized implementation support. The primary outcome, number of Veteran "days not at home," and secondary outcomes, changes over 3 months in measures of caregiver well‐being, were compared between pre‐ and post‐iHI‐FIVES intervals using generalized linear models including covariates. Data Collection/Extraction Methods: Patient data were extracted from the electronic health record. Caregiver data were collected from 2 telephone‐based surveys. Principal Findings: Overall, n = 898 eligible Veterans were identified across pre‐iHI‐FIVES (n = 327) and post‐iHI‐FIVES intervals (n = 571). Just under one fifth (17%) of Veterans in post‐iHI‐FIVES intervals had a caregiver enroll in iHI‐FIVES. Veteran and caregiver demographics in pre‐iHI‐FIVES intervals were similar to those in post‐iHI‐FIVES intervals. In adjusted models, the estimated rate of days not at home over 6‐months was 42% lower (rate ratio = 0.58 [95% confidence interval: 0.31–1.09; p = 0.09]) post‐iHI‐FIVES compared with pre‐iHI‐FIVES. The estimated mean days not at home over a 6‐month period was 13.0 days pre‐iHI‐FIVES and 7.5 post‐iHI‐FIVES. There were no differences between pre‐ and post‐iHI‐FIVES in change over 3 months in caregiver well‐being measures. Conclusions: Reducing days not at home is consistent with effectiveness because more time at home increases quality of life. In this study, after adjusting for Veteran characteristics, we did not find evidence that implementation of a caregiver training program yielded a reduction in Veteran's days not at home. [ABSTRACT FROM AUTHOR]

Loneliness has become a significant public health issue among community‐dwelling older adults particularly those with multimorbidity. Family caregivers are crucial care resources for dependent older adults living in the community before transitioning to institutional services. However, understanding of their perceptions in supporting older adults with multimorbidity to cope with loneliness is limited. This qualitative study aimed to elucidate on the experiences of caring and explore the experiences and perceptions of family caregivers in supporting older community‐dwelling adults with multimorbidity to cope with loneliness. Eleven family caregivers, aged 51–93 years old, with at least 2 years of caregiving experience were purposively recruited and interviewed individually. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was utilised to report the study. Three key themes were generated from the inductive analysis: (1) recognising older adults' loneliness through the expression of unusual emotions, behaviour/s, social network alteration and speech; (2) variations in perceptions and responses to loneliness among different family caregiving relationships; and (3) challenges in addressing loneliness. Positive feedback from cared‐for older adults was appreciated by their family caregivers which in turn motivated further actions to alleviate loneliness. The findings emphasised the importance of developing specific patients and family caregivers centred interventions, such as communication skills training to enhance effective communications. Cultural values and norms of individuals should be respected in those interventions, ensuring that emotional expression is facilitated in a comfortable way for both older patients and family caregivers. [ABSTRACT FROM AUTHOR]

Objectives: The current study examined whether informal caregivers performed worse, better, or similar to non-caregivers on cognitive tests of executive functioning and episodic memory over 10 years. Methods: Data were from waves 2 (2003–04) and 3 (2013–14) of the Midlife in the United States (MIDUS) study (N = 2086). Multiple linear regression models examined whether caregiving at both waves 2 and 3 predicted better cognitive functioning at wave 3, than caregiving at only one time point or no caregiving (reference) while controlling for baseline covariates (i.e., sociodemographic, health, and functional status). Results: After controlling for covariates, caregiving at both waves was independently associated with better performance in episodic memory (b =.24, SE =.10, p =.013) but not executive function (b = −.06, SE =.05, p =.246). Discussion: The findings partially supported both healthy caregiver and stress process models, indicating caregiving may be associated with better episodic memory but not executive functioning over time among the middle-aged and older adults. [ABSTRACT FROM AUTHOR]

The aging population in Taiwan increases the demand for care services for older adult patients with cancer, presenting significant challenges to both healthcare and social systems. Family caregivers perceive caregiver burden since they assist patients with daily activities, health management, and medical decision-making face physical, psychological, economic, and social stressors that impact their overall well-being. Taking care of older patients causes more complicated caregiving tasks because of the treatments and care related to cancer and multiple chronic conditions. Caregiver burden is known to be influenced by age, health, education, and disease awareness. Furthermore, in Taiwan, the participation of foreign spouses and migrant workers in family care increases cultural and resource-related challenges and highlights the need for integrated long-term care resources and social support. Using family caregiver assessments testing caregiver burden and quality of life can specify family caregiver needs that assist healthcare teams in developing family care plans. Interventions, including cancer education, psychological support, caregiving training, and collaborative models involving both patients and caregivers, may alleviate caregiver stress, improve quality of life, and enhance coping abilities. Moving forward, nursing professionals should advocate for integrated care models that incorporate comprehensive geriatric assessments and design interventions tailored to the specific needs of diverse family caregivers of older cancer patients. These approaches will help improve the quality of life for both caregivers and older cancer patients and foster a supportive care environment through interdisciplinary collaboration to address the health challenges of an aging society. [ABSTRACT FROM AUTHOR]

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Background: Antimicrobial resistance (AMR) has been identified as one of the top ten public health threats facing humanity. Aim: The purpose of this study was to assess the effect of an antimicrobial stewardship educational intervention on family caregivers' knowledge and practices in primary healthcare settings in Egypt. Methods: A quasi-experimental, one-group pretest-posttest design involving a sample of 300 family caregivers attending family health centers. The data were collected using questionnaires that assessed caregiver knowledge and self-reported practices regarding AMR before and after the intervention (primary outcomes). The intervention combined tailored knowledge and practice components that carefully evaluated participants' knowledge regarding AMR, health risk, antibiotic usage, and prevention of infection. Furthermore, their practice of using antibiotics, including previous antibiotic exposure, their antibiotic use during the past year, reasons for taking antibiotics, ways of obtaining antibiotics, and reasons for discontinuing of antibiotic therapy were also recorded. Results: The pre-intervention assessment revealed poor knowledge and practice regarding antibiotic use. Post-intervention, mean knowledge scores increased significantly from 18.36 to 23.28 (t = 19.5, p < 0.0001), while mean practice scores improved from 9.83 to 12.37 (t = 6.4, p < 0.0001). Conclusions: The intervention successfully improved caregivers' knowledge and practices regarding AMR. However, there are some limitations that could affect the generalization, and the impact of the results such as the relatively small sample size recruited from a single center, lack of a control group, reliance on self-reported data, and lack of long-term follow-up. Future studies should aim to address these constraints in order to assess the intervention's effectiveness. [ABSTRACT FROM AUTHOR]

Stroke, a significant neurological condition, often results in stroke survivors who are older adults relying on family caregivers, including children and spouses, leading to increased challenges for caregivers. This study investigates the experiences of family caregivers caring for stroke survivors who are older adults, focusing on the context of stroke management. Participants were purposively sampled, and three focus group discussions involving family caregivers (n = 18) of older adults who had experienced strokes were conducted. Conversations were recorded, translated, transcribed, and subjected to thematic analysis utilizing NVivo (version 12 pro) software. Thematic analysis yielded five distinct themes. The first theme illuminated family caregivers' insights regarding the management of stroke in their members or significant others. The second theme emphasized the support and information received at the medical facility. The third theme showcased the perceived value of the information provided. The fourth theme highlighted unmet needs for both information and training in social support. The final theme illuminated the participants' preferences for how they would like to receive information and training. This study highlights family caregivers' experiences, encompassing a range of burdens, stresses, and challenges while caring for stroke survivors who are older adults. Findings emphasize the necessity for formal caregivers to provide adequate information, support, and training to family caregivers, thereby alleviating their burdens and enhancing stroke management in a home environment. [ABSTRACT FROM AUTHOR]

Giriş: Palyatif bakım dünyada ve ülkemizde yeni bir disiplin olup gelişmeye devam etmektedir. Palyatif bakım ünitelerindeki hasta yakınlarının gereksinimleri göz önünde bulundurulmalı ve giderilmelidir. Amaç: Bu çalışmada, palyatif bakım ünitesinde yatmakta olan hastaların bakım verici rolünü üstlenen aile üyelerinin gereksinimlerinin ve bakım verme yüklerinin belirlenmesi amaçlanmıştır. Yöntem: Kesitsel tipteki bu çalışma, Türkiye’de bulunan bir eğitim ve araştırma hastanesinin palyatif bakım ünitesinde yatmakta olan 100 hastanın yakını ile gerçekleştirilmiştir. Çalışmanın verileri; Hasta ve Yakını Tanılama Formu, Zarit Bakım Verme Yükü Ölçeği ve Aile İhtiyaçları Ölçeği kullanılarak toplanmıştır.Bulgular: Çalışmaya katılan hasta yakınlarının Zarit Bakım Verme Yükü Ölçeği toplam puan ortalamaları 38,56 ± 6,47, önem alt boyutu puan ortalamaları 83,57 ± 6,82, karşılanma alt boyutu puan ortalamaları ise 38,34 ± 5,39 olarak bulunmuştur. Bakım verme süresi arttıkça hasta yakınlarının bakım verme yükü arterken, bakım verme süresi azaldıkça hasta yakınlarının önem ve karşılanma alt boyutu puan ortalamalarının arttığı belirlenmiştir. Hasta yakınlarına uygulanan Zarit Bakım Verme Yükü Ölçeği’nin toplam puan ortalaması ile önem ve karşılanma alt boyut puanları arasında istatistiksel anlam saptanmamıştır (p gt; 0.05). Sonuç: Araştırmaya katılan hasta yakınlarının bakım verme yükünün orta derecede olduğu, bakım verme yükleri arttıkça önem ve karşılanma düzeylerinin arttığı; bakım verme yükünün aile ihtiyaçlarını etkilemediği belirlenmiştir

Abstract Objective The sandwich generation refers to individuals who are simultaneously responsible for caring for their aging parents and their own children. Research shows that the number of sandwich generation caregivers is increasing, and they face significant physical, psychological, social, and economic challenges. Therefore, it is crucial for these caregivers to develop effective coping strategies. This study aimed to identify the coping mechanisms used by sandwich generation caregivers. Methods In 2022, during the COVID-19 pandemic, we conducted a qualitative study involving semi-structured interviews with 18 sandwich generation caregivers in Tehran, Iran, who were responsible for both elderly parents and their own children. These interviews were conducted either in person or by telephone. Subsequently, the collected data were analyzed using the inductive content analysis method within the MAXQDA software (2018 version). Results Data analysis revealed three categories of coping strategies: “distancing from the situation”, “self-soothing” (including sub categories of spiritual matters, establishing relationships, emotional outlet, and engaging in favorite activities), and “diversifying responses to needs” (including transferring responsibility to the family members, prioritizing needs for responsiveness, utilizing available community services, mediating to reduce conflict, and remote monitoring of the older adult). Conclusion Sandwich generation caregivers use various coping strategies, each with different outcomes. This study found that self-care and using social resources can greatly reduce caregiving burdens. Therefore, providing these caregivers with training in problem-solving and self-care skills is recommended to better prepare them for their responsibilities.

Abstract Background Family caregivers of people with dementia are a distinct group due to the particularly stressful and time-intensive care situation at home. Despite these challenges, involving them in research is crucial to better understand and address their specific needs. However, little evidence exists regarding a tailored approach for researchers for this group considering their situation at home. Methods A scoping review will be conducted following the Joanna Briggs Institute methodological guidance, including the databases MEDLINE (PubMed), CINAHL, Scopus (Elsevier), and PsycINFO (EBSCO). The review will include family caregivers of people with dementia, regardless of age, gender, or ethnicity, who have been actively involved in research throughout the research process. Moreover, sources of evidence from any country in both English and German are eligible for inclusion. Sources will be screened by two independent reviewers. Results will be extracted using a tailored charting tool and presented in the final report according to the research questions and objectives. Discussion Developing a tailored approach to involve family caregivers of people with dementia in research and development has profound importance to both the scientific community and the target group itself. Systematic review registration Open Science Framework https://doi.org/10.17605/OSF.IO/PMZYV .

Abstract Background Ethical decision making is a complex issue because it strongly depends on the religion, beliefs, traditional laws and moral views of each society. The purpose of this study was to explore the experience of Iranian family caregivers of end stage cancer patients about ethical decision making. Methods This qualitative study is based on van Manen’s method of hermeneutic phenomenology. In-depth interviews were carried out to collect data. Participants were 12 caregiver. Audiotapes were transcribed and analyzed for common themes that represented the participants’ experiences. Trustworthiness of the findings was established using the Lincoln and Guba’s criteria. Results Three themes reflected the essence of caregivers’ lived experience including; fluctuating between hope and despair, wandering dilemma, and ethical decision making. Each of these themes consisted of several subthemes. Conclusion The present study revealed that, the caregivers of terminally ill cancer patients need different information about prognosis and end of life decision making process. Our perception of how families negotiate ethical issues in their decision-making is still developing. Opportunities should be created to empowering caregivers to talk about their uncertainties and concerns.

Abstract Background The ageing population has increased the demand for healthcare services. In Norway, community-based long-term care are prioritised, leading to fewer nursing home places. As a result, nursing home residents are now older and have more complex needs. Nearly 92% of nursing home residents are affected by cognitive impairments accompanied by neuropsychiatric symptoms (NPS) that affect their daily activity, physical function, cognition, and behaviour. Traditionally, pharmacological therapy has been the prevailing treatment for NPS. However, emerging evidence suggests that physical activity can serve as an alternative treatment approach. Physical activity has the potential to maintain physical independence and enhance the quality of life (QoL) for the residents. Despite these benefits, institutionalisation in a nursing home often restricts activity levels of residents. This study explores facilitators and barriers to physical activity in nursing homes through the experiences of healthcare professionals and family caregivers. The goal is to enhance our understanding of how to promote and support physical activity for nursing home residents by identifying essential factors for successfully implementing daily physical activity initiatives. Methods Seven focus groups were conducted with a total of 31 participants. Participants included healthcare professionals (physiotherapists, nurses, unit- and department managers, assistant occupational therapists, and assistant nurses) and family caregivers of residents at nursing homes. Data were analysed using Braun and Clarke’s reflexive thematic analysis, underpinned by hermeneutic phenomenology. Results Three main themes related to facilitators and barriers to physical activity in nursing homes were identified: inconsistency in task prioritisation; need for improved interprofessional collaboration; and need for improved utilisation of external resources. The participants experienced task prioritisation and lack of interdisciplinary collaboration as barriers to physical activity. The involvement of external societal resources was considered as both a facilitator and a necessity for obtaining physical activity in nursing homes. Conclusions This study highlights the need for a consensus in task prioritisation, enhanced competence among healthcare professionals, and better interdisciplinary collaboration to facilitate physical activity in nursing homes. Involving external societal resources could be a strategic approach to address barriers and support physical activity initiatives. Future research should focus on developing effective strategies for interdisciplinary collaboration that prioritises and promotes physical activity in nursing homes.

Abstract 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 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 Background Clinical guidelines recommend systematic follow-up of patients surviving invasive meningococcal disease (IMD) to assess sequelae. However, little is known about survivors and family caregivers’ experiences of the follow-up care. Study sought to explore IMD survivors’ and their family caregivers’ experiences after hospitalization for IMD and to identify unmet needs. Methods Semi-structured interviews were conducted with patients and family caregivers, identified through hospitals database. Interviews were audiotaped, transcribed and subject to a thematic analysis. NVivo software was used for data management and analysis. Results Eight IMD survivors and 14 family caregivers were interviewed. Three themes were identified from the data: (1) perception of patient and family caregiver on follow-up after IMD and role of healthcare professionals; (2) access to care and support; (3) relationship with healthcare professionals. Although most were satisfied with follow-up care after IMD, suggestions for improving the healthcare pathway were made relating information on potential sequelae and follow-up care, coordination, and access to psychological support. Conclusions This study confirms the need for more structured follow-up care for patients suffering from IMD and their families which is currently limited and focused on physical recovery. Optimal follow-up should aim to provide sufficient information, emotional support and logistical support for patient and family caregivers. Trial registration Ethics Committee of University of Lyon, France (ref: 2022-06-23-002).

AbstractIn palliative care, family caregivers are partners of multidisciplinary teams in the continuity of care at home. Effective therapeutic management provides optimal relief of distressing symptoms. It requires the acquisition of specific knowledge and care, but it also involves decision-making with ethical implications that increase the stress and burden on caregivers. The themes identified reflect the tangled dynamics of managing therapeutic regimens in the complexity of being a family caregiver. Therapeutic management relates to effective symptom management, which requires tasks and skills. This management is filled with uncertainties, fears, and emotions that arise from the complexity, responsibility, and weight represented by managing therapeutic regimens. Family caregivers are presented as coordinating elements within the healthcare system. The role of family caregivers is multidimensional, with numerous tasks and skills needed to support their relatives. Therapeutic management is more than just administering medications and needs to keep up with growing and fluctuating needs. [ABSTRACT FROM AUTHOR]

Background: Ethical decision making is a complex issue because it strongly depends on the religion, beliefs, traditional laws and moral views of each society. The purpose of this study was to explore the experience of Iranian family caregivers of end stage cancer patients about ethical decision making. Methods: This qualitative study is based on van Manen's method of hermeneutic phenomenology. In-depth interviews were carried out to collect data. Participants were 12 caregiver. Audiotapes were transcribed and analyzed for common themes that represented the participants' experiences. Trustworthiness of the findings was established using the Lincoln and Guba's criteria. Results: Three themes reflected the essence of caregivers' lived experience including; fluctuating between hope and despair, wandering dilemma, and ethical decision making. Each of these themes consisted of several subthemes. Conclusion: The present study revealed that, the caregivers of terminally ill cancer patients need different information about prognosis and end of life decision making process. Our perception of how families negotiate ethical issues in their decision-making is still developing. Opportunities should be created to empowering caregivers to talk about their uncertainties and concerns. [ABSTRACT FROM AUTHOR]

Introduction Aim Method Result Conclusion Alcohol use disorder (AUD) is a global concern with negative physical, psychological and social consequences. The ramifications of AUD extend beyond the individual and affect their family caregivers. Yet, the majority of existing research has primarily focused on individuals with AUD and interventions to encourage their abstinence rather than on their support systems.In order to advance a holistic approach, research to address this gap is imperative to understand family caregiver concerns and needs for added support.We conducted a qualitative study using van Manen's hermeneutic phenomenological approach to uncover the meaning of family caregivers' lived experiences and capture the essence of their involvement in caring for a relative with AUD. A purposeful and snowball sample of family members (N = 10) living within the United States participated in a face‐to‐face or virtual, one‐on‐one audio‐recorded interview and a second meeting for member checking the transcribed data. Participants received a $20.00 gift card as a token for their participation.Six major themes emerged from the description of participants' lived experiences: (1) traversing the peaks and valleys, (2) wandering in the unknown, (3) pointing fingers, (4) weathering the storm, (5) drawing a line and (6) looking back, looking in. Although participants experienced many challenges, they never relinquished and remained committed to their caregiver role. Steadfastly staying with their relatives through crises exemplifies commitment as described by Sister Simone Roach's Theory of Caring. Through the ups and downs, each participant found meaning from the experience, which aligned closely with Starck's Theory of Meaning.This study has implications for nursing practice, public health policy and highlights the need for collaboration to address the existing challenges for family caregivers of relatives with AUD. [ABSTRACT FROM AUTHOR]

The aging population in Europe is increasing, with growing ethnic diversity among older individuals due to migration. Public policies emphasize 'aging in place' to address financial challenges and reduce the burden on the healthcare system. However, research often overlooks the heterogeneity among older people, especially non-European migrants. Also, research on family caregivers' role in enabling 'aging in place' for older relatives with migrant backgrounds is limited, despite many older non-European migrants' preference for family care in comparison to long-term institutional care. This study aims to explore the experiences and perspectives of family caregivers in the context of formal and informal care and their preferences regarding the place of care for older family members with migrant backgrounds, particularly the Pakistani Ahmadiyya community in Norway. Eighteen semi-structured individual interviews and two group interviews were conducted in Urdu and English with nineteen female family caregivers of older relatives, ages 25–62, residing in Norway. The analysis yielded three main themes: (1) "Nursing homes are not for the ones who love their parents", (2) Preferences for home with the possibility of sharing care, and (3) Mismatch between family care needs and formal care. Family caregivers' perception of health services has a decisive impact on their older relatives' demand and use of formal health services, emphasizing the need for trust. Even though home care services were seen as a viable option, they should be adapted so that the family caregivers can use them and feel supported in enabling 'aging in place' for older migrants. [ABSTRACT FROM AUTHOR]

Background: Family caregivers of people with dementia are a distinct group due to the particularly stressful and time-intensive care situation at home. Despite these challenges, involving them in research is crucial to better understand and address their specific needs. However, little evidence exists regarding a tailored approach for researchers for this group considering their situation at home. Methods: A scoping review will be conducted following the Joanna Briggs Institute methodological guidance, including the databases MEDLINE (PubMed), CINAHL, Scopus (Elsevier), and PsycINFO (EBSCO). The review will include family caregivers of people with dementia, regardless of age, gender, or ethnicity, who have been actively involved in research throughout the research process. Moreover, sources of evidence from any country in both English and German are eligible for inclusion. Sources will be screened by two independent reviewers. Results will be extracted using a tailored charting tool and presented in the final report according to the research questions and objectives. Discussion: Developing a tailored approach to involve family caregivers of people with dementia in research and development has profound importance to both the scientific community and the target group itself. Systematic review registration: Open Science Framework https://doi.org/10.17605/OSF.IO/PMZYV. [ABSTRACT FROM AUTHOR]

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]

Background: With growing reliance on family caregivers to support people with advanced heart failure and to help them die at home, family caregivers need the relevant information to support this. However, evidence has shown that families continue to have deficits in their knowledge of heart failure and what to expect as the disease advances. This can lead to a high level of uncertainty and stress for family. Aim: To explore family caregivers experiences of accessing information from healthcare professionals when caring for someone with heart failure. Method: A qualitative exploratory study design was adopted using a critical realist approach. The study was conducted in one large urban area of Aotearoa New Zealand. Participants were family caregivers of people who had died between April and November 2019. Data was collected using semi-structured telephone interviews. Results: A total of 15 family caregivers participated. A thematic analysis identified three themes related to accessing information from healthcare professionals: 1) gaining access to healthcare professionals 2) developing, understanding and translating information and 3) receiving information in a timely manner. Conclusions: Findings highlight the difficulites that family carers of people with heart failure experience in accessing, receiving and understanding the information they require. Further research is needed on supporting healthcare professionals to develop skills in appearing accessible within an environment of 'busyness'. Furthermore, investigating strategies which will enable healthcare settings to be more responsive and flexible to the needs of family caregivers is needed. [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]

• Family caregivers perceived difficulties in caregiving for dementia, the poor respite environment, and the struggles associated with the symptoms and progression of dementia. • Sleep quality was correlated with psychological status, such as feelings of confusion, depression, tension, and vigor in family caregivers. • Sleep quality was correlated with long hours of caregiving per day in family caregivers. • The night care, sleep status, and mood of people with dementia influenced the family caregivers' sleep quality. This mixed method study evaluated caregiver burden and psychological status and their associations with objective sleep quality among seven pairs of older people with dementia (PWD) and their family caregivers (FCs). The Barthel index, the Zarit Burden Interview (ZBI), and conversations data with a virtual agent were used to assess caregiver burden, the Profile of Mood States (POMS) to assess the FCs' psychological status, and Nemuri SCAN to measure sleep quality. As a result, sleep duration was negatively correlated with POMS Confusion-Bewilderment and Vigor-Activity (VA), sleep efficiency was positively correlated with ZBI and negatively correlated with POMS-VA, sleep latency was positively correlated with POMS Tension-Anxiety, and wake after sleep onset was negatively correlated with ZBI and positively correlated with POMS Depression-Dejection and VA. The lack of sleep or night care and good mood among PWD affected the FCs' sleep quality. These findings could contribute to reduce the FC's caregiver burden. [ABSTRACT FROM AUTHOR]

Family caregivers of people with neuropsychiatric conditions are at risk of caregiver burden and declining health. The aims of this study were to identify the impact of caring on long-term family caregivers and their unmet needs and to explore their self-care strategies for achieving a successful caregiving experience. A mixed-method study was conducted using semi-structured interviews and a questionnaire in which standardized, self-reported measures of burden, health behaviors, sleep, and mental well-being were administered. Participants were family caregivers of people with neuropsychiatric disorders. Convenience sampling of 28 caregivers: 13 of people with mental health disorders (schizophrenia and bipolar disorder) and 15 with Alzheimer's disease. Based on the analysis of the semi-structured interviews, data saturation was reached. Analysis of self-reported measures indicated that 32.1% of long-term caregivers had high caregiver burden, 64.3% had reduced quality of life, 39.3% had low sleep quality, 21.4% had low adherence to the Mediterranean diet, 50.0% had a physical activity below the recommendation, 42.9% had high anxiety symptoms, 35.7% had high depressive symptoms, and 71.4% had reduced self-care agency. Content analysis and statistical analysis were conducted. Two themes were identified: (1) the impact of long-term caregiving and unmet needs and (2) successful self-care strategies. Caregivers of people with Alzheimer's disease spent less time doing physical activity, had higher caregiver burden, and poorer health-related quality of life. The negative impact of caregiving could be prevented/managed by assessing the individual's circumstances for the development of cross-sectional self-care strategies involving physical, emotional, and social spheres. [ABSTRACT FROM AUTHOR]

Background: Effective hospital discharge planning is crucial, particularly in educating caregivers on handling medical devices. This education helps manage the patient's signs and symptoms, prevents post-discharge complications, and reduces early readmissions. This study aimed to understand aspects involved in the acquisition of mastery by home caregivers, in handling care of a patient who just underwent gastrostomy, after educational intervention during hospitalization and telemonitoring upon return home. Methods: Qualitative descriptive study. It followed 15 caregivers of people with percutaneous endoscopic gastrostomy. The intervention took place between November 2022 and July 2023 in the neuromusculoskeletal unit of a Brazilian university hospital. Results: The educational intervention had four stages. In stage 1, caregivers felt confused and uncertain about managing PEG. By stage 2, they expressed a desire to be capable of handling care, especially in the event of potential complications, and showed increased awareness and engagement. Stage 3 highlighted the effectiveness of hands-on training with feedback from professionals. In stage 4, during monitoring, several complications were noted, including granuloma formation in the stoma, tube obstruction, and accidental tube loss. However, caregivers demonstrated the ability to handle these situations, indicating the effectiveness of the training and telemonitoring interventions. Conclusions: Nursing professionals should consider various factors when training caregivers in a hospital setting, including providing adequate space, allocating sufficient time for educational interventions, offering both theoretical and practical demonstrations, ensuring effective communication, and taking into account the caregivers' context, as they play a direct role in acquiring a safe and effective skill set. [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]

Introduction: Caring for patients who have schizophrenia in tidal floods requires more effort than patients who have schizophrenia in non-tidal flood areas. Family caregivers are required to manage stress and burden through adaptation to roles and the environment. Objective: The purpose of this study was to explore the meaning of family adaptation experiences of those who care for patients with schizophrenia in a tidal flood area. Methods: This research is a qualitative research with a descriptive phenomenology. The sampling technique used purposive sampling, and the number of participants was 10. The data collection used in-depth interview techniques. The Colaizzi method was used to analyze data. Results: The adaptation experience meaning of family caregivers obtained four themes: (1) forms of family caregiver responses; (2) patient engagement as a way to provide quality care at home by family caregivers; (3) family caregivers' difficulties in utilizing health services; and (4) resources for family caregivers. Conclusion: The meaning of adaptation is whether the family caregivers feel the impact of their role and have difficulty utilizing health services in caring for patients. Despite this, family caregivers still try to continue to involve patients in daily activities and look for sources of support that are useful for them. Recommendation: The physical and psychological well-being of family caregivers also need to be improved to support optimal care for patients who have schizophrenia by family caregivers at home. [ABSTRACT FROM AUTHOR]

Background/Objectives: Caregivers play an important role in supporting care recipients to navigate their health needs, including adherence to dietary recommendations, which are complex and multifaceted. This study aims to (i) describe the nutrition knowledge of caregivers of people with chronic kidney disease (CKD), and (ii) explore caregivers' perceptions of their role in providing healthy meals and nutrition support for care recipients. Methods: A cross-sectional study design employed a multi-strategy research approach. Caregivers (n = 78) of people with stage 1–5 CKD or post-transplant were recruited from a single centre. Their nutrition knowledge was assessed quantitatively with the revised General Nutrition Knowledge questionnaire. Theory-informed semi-structured interviews of a sub-sample (n = 12) qualitatively explored caregiver perceptions. Results: Most caregivers were female (75.6%) and cared for a male care recipient (87%; aged 74 (66; 80) yrs.). The caregivers (75.6%) provided a meal ≥6 times/week to their care recipient and had moderate nutrition knowledge (66.1 (60.5; 73.9)%). Four themes emerged describing the caregivers' perceptions of meal provision and nutrition support, including the following: (i) food literacy skills are valued; (ii) social support is important; (iii) caregivers' sense of social responsibility; and (iv) the management of complex and multifaceted dietary needs. Conclusions: The caregivers had moderate nutrition knowledge; they wanted to provide healthy meals and support to their care recipients to adhere to dietary recommendations. Targeted, co-designed nutrition education programs for caregivers may enhance nutrition care delivery to people with CKD. [ABSTRACT FROM AUTHOR]

Background: The ageing population has increased the demand for healthcare services. In Norway, community-based long-term care are prioritised, leading to fewer nursing home places. As a result, nursing home residents are now older and have more complex needs. Nearly 92% of nursing home residents are affected by cognitive impairments accompanied by neuropsychiatric symptoms (NPS) that affect their daily activity, physical function, cognition, and behaviour. Traditionally, pharmacological therapy has been the prevailing treatment for NPS. However, emerging evidence suggests that physical activity can serve as an alternative treatment approach. Physical activity has the potential to maintain physical independence and enhance the quality of life (QoL) for the residents. Despite these benefits, institutionalisation in a nursing home often restricts activity levels of residents. This study explores facilitators and barriers to physical activity in nursing homes through the experiences of healthcare professionals and family caregivers. The goal is to enhance our understanding of how to promote and support physical activity for nursing home residents by identifying essential factors for successfully implementing daily physical activity initiatives. Methods: Seven focus groups were conducted with a total of 31 participants. Participants included healthcare professionals (physiotherapists, nurses, unit- and department managers, assistant occupational therapists, and assistant nurses) and family caregivers of residents at nursing homes. Data were analysed using Braun and Clarke's reflexive thematic analysis, underpinned by hermeneutic phenomenology. Results: Three main themes related to facilitators and barriers to physical activity in nursing homes were identified: inconsistency in task prioritisation; need for improved interprofessional collaboration; and need for improved utilisation of external resources. The participants experienced task prioritisation and lack of interdisciplinary collaboration as barriers to physical activity. The involvement of external societal resources was considered as both a facilitator and a necessity for obtaining physical activity in nursing homes. Conclusions: This study highlights the need for a consensus in task prioritisation, enhanced competence among healthcare professionals, and better interdisciplinary collaboration to facilitate physical activity in nursing homes. Involving external societal resources could be a strategic approach to address barriers and support physical activity initiatives. Future research should focus on developing effective strategies for interdisciplinary collaboration that prioritises and promotes physical activity in nursing homes. [ABSTRACT FROM AUTHOR]