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Background: COVID-19-related restrictions led to an increase in overall loneliness and social isolation. Before the pandemic, care partners reported higher levels of loneliness and higher loneliness prevalence compared to non-care partners. Because of the spread and severity of the infections, and the access to support spread, we expect a different impact of the COVID-19 pandemic on LATAM care partners. Objectives: To describe the loneliness levels of LATAM caregivers and to identify socioeconomic and health factors associated. Design: An international online cross-sectional survey for care partners, embedded within the 'Coping with Loneliness and Isolation during COVID-19' (CLIC) Study conducted between June 2020– and November 2020. Setting: We analysed data from 246 family care partners living in Latin American countries (46% Mexico, 26% Chile,18% Brazil, and 10% from Argentina, Peru, Venezuela, Panama, Guatemala y Costa Rica). Measurements: We assessed loneliness using the 6-items of De Jong Gierveld loneliness Scale. We described the levels of overall, emotional, and social loneliness pre and during Covid, and reported the distribution of care partners who improved, worsened or maintained their levels of loneliness. Moreover, we used longitudinal multiple linear regression models with bootstraps errors of 1,000 iterations to identify factors associated with the levels of overall, emotional, and social loneliness during the pandemic. Results: Participants were mostly women, 50 years and older, in a partnership, highly educated and with finances meeting their needs, with good to excellent physical and mental health. Among the total of care partners, 55% perceived higher overall loneliness, 56% higher emotional loneliness, and 21% higher social loneliness during the pandemic in comparison with pre-COVID-19 levels. Perceived mental health was associated with the overall, emotional, and social loneliness. Conclusions: Regardless of their living and health situation, during the pandemic, loneliness increased in all groups of care partners. These should be taken in consideration when planning public health approaches for crises such as pandemics or other large-scale disruptive events. [ABSTRACT FROM AUTHOR]

Introduction: While some studies have explored family caregivers' anxiety and depression, limited research has been conducted on family caregivers' anxiety and depression caused by the duration of companionship, resulting in an unclear relationship between the length of accompaniment and the psychological well-being of family caregivers. Methods: This cohort study was conducted from April 1, 2022, to June 30, 2022 in general surgery. We employed bar graphs and line graphs to illustrate the relationship between accompanying days and anxiety and depression. Additionally, mixed-effects linear regression models were utilized to examine the correlation between accompanying days and the likelihood of anxiety and depression. Results: The study had 207 family caregivers, with 23.5% experiencing anxiety and 13.1% experiencing depression. Anxiety and depression scores peaked on day 9, and the incidence rate was the highest for the third group (≥10 days). Family caregivers in the first group (≤4 days) of companionship had significantly higher anxiety (β=0.27, 95% CI 0.16-0.39, p <0.001 in all three models). Those in the second group (5-9 days) and the third group (≥10 days) showed no significant correlation with anxiety scores, except for a negative correlation in Model III (β=-0.15, 95% CI -0.29 to -0.01) for companionship in the third group (≥10 days). Family caregivers in the first group (≤4 days) of companionship had significantly higher depression scores (β=0.19, 95% CI 0.10-0.29, p <0.001 in all three models). Those in the second group (5-9 days) had no significant relationship with depression, while those in the third group (≥10 days) exhibited a small negative correlation in Model II and III (β= -0.02, 95% CI -0.08-0.04). The sensitivity analysis confirms the mixed-effects linear regression findings. Conclusion: There was a positive correlation between the duration of family companionship and anxiety and depression in the early days. [ABSTRACT FROM AUTHOR]

AbstractObjectivesMethodResultsConclusionTaking care of a relative with dementia is linked to relevant consequences on the physical and psychological status of the caregiver. However, several variables, such as experiential avoidance, ambivalence, and guilt feelings or the presence of rigid beliefs about care, may influence the impact of the stressors derived from caregiving. The objective was to identify caregiving profiles based on these variables and to examine their correlates.A total of 456 dementia caregivers participated.The results of latent profile analysis yielded three distinct profiles: (1) flexible, (2) rigid, and (3) ambivalent. The ambivalent profile was mostly composed of younger women who reported higher levels of depression, anxiety, and desire to institutionalize their relative with dementia. The rigid profile showed a lower use of formal resources for caring.Our findings may help clinicians to identify highly vulnerable profiles in caregiving, which may be defined by being a younger woman, devoting fewer hours to caring, and reporting high stress associated with behavioral problems, and high levels of guilt and ambivalence. [ABSTRACT FROM AUTHOR]

ABSTRACT Aims Design Methods Results Conclusions Relevance to Clinical Practice Impact No Patient or Public Contribution This study identifies instruments for assessing the burden on family caregivers of cancer patients and evaluates their psychometric properties using COSMIN criteria.A systematic review based on COSMIN methodology.The review adhered to PRISMA guidelines. Relevant studies were identified through searches in PubMed, Web of Science, Cochrane Library, Embase, China National Knowledge Infrastructure, Wanfang Database, and China Science and Technology Journal Database, covering literature from inception to September 2024. Included studies focused on developing or validating measurement tools and assessing psychometric properties such as reliability, internal consistency and construct validity. Two independent researchers screened the literature, extracted data and evaluated psychometric properties using COSMIN criteria while assessing evidence quality via the GRADE method.A total of 32 studies were included, encompassing 17 tools for assessing caregiver burden. None reported measurement error, cross‐cultural validity or responsiveness. The Caregiver's Burden Scale in End‐of‐Life Care (CBS‐EOLC) demonstrated strong reliability, validity and internal consistency, receiving a strong recommendation for clinical practice. In contrast, the Zarit Burden Interview (ZBI), Family Caregiver Burden Interview Scale (FBIS) and Bakas Caregiving Outcomes Scale (BCOS) are not recommended due to insufficient supporting evidence. Other tools showed weak evidence, leading to weak recommendations.The CBS‐EOLC exhibits comprehensive psychometric properties suitable for clinical applications. The ZBI, FBIS and BCOS lack adequate supporting evidence and are not recommended. Future research should focus on measurement error, cross‐cultural validity and responsiveness to enhance these tools' applicability and reliability.This review provides evidence for healthcare providers to select instruments for assessing caregiver burden in cancer patients.This systematic review highlights the need for comprehensive assessments of caregiver burden based on COSMIN guidelines.This study is a systematic review with no patient or public participation. [ABSTRACT FROM AUTHOR]

BackgroundMethodsResultsConclusionsPrevious research has demonstrated that individuals with intellectual and developmental disabilities (IDD) experience a variety of barriers in accessing mental health care and that family caregivers often play an integral role in helping individuals with IDD navigate these systems. However, little research has focused on family caregivers’ perceptions of accessing mental health services.To better understand their perspectives, we analyzed responses to an open-ended question about challenges to accessing mental health resources for adults with IDD from 208 family caregivers. Responses were analyzed using a team-based approach to qualitative data analysis.We identified five themes that capture both systematic issues and personal or interpersonal challenges that reduce access to high quality mental health care among adults with IDD. In addition to the barriers, we also identified some accounts of families succeeding in accessing adequate mental health care.We offer practical implications for research, policy, and practice that can help reduce barriers to mental health care for adults with IDD. [ABSTRACT FROM AUTHOR]

Objective: The primary aim of this study is to elucidate the spiritual needs encountered by family members who intricately engage in the progression of illness within the palliative care framework, thus assuming the paramount responsibility of caregiving. Methods: This study was approved by the Institutional Review Board and Ethics Committee of the University of Health Sciences İzmir Tepecik Training and Research Hospital (17/01/2022–2022/01–16). The research was designed as a prospective study. It was conducted through face-to-face, interactive interviews with family caregivers of patients admitted to the palliative care unit at Tepecik Training and Research Hospital between April 2022 and December 2022. The interviews were performed using a phenomenological approach and structured in a question-and-answer format. Data from twenty family caregivers were analyzed using thematic analysis. The questions were specifically designed to explore the psychological processes, spirituality, conceptions of God, meaning-making, and coping strategies of the family caregivers. Results: Caregivers experienced various psychological and emotional states progressing through stages of denial, anger, and acceptance. Spirituality emerged as a critical coping mechanism providing strength and meaning amidst caregiving challenges. Caregivers' perceptions of God varied from loving to punitive, influencing their interpretations of suffering and caregiving roles. Conclusion: This study underscores the importance of integrating spiritual support into palliative care practices. Recognizing and addressing caregivers' spiritual needs is crucial for enhancing their well-being and improving the quality of palliative care delivery. Training healthcare professionals in spiritual care and implementing targeted interventions can effectively support family caregivers in their caregiving journey. [ABSTRACT FROM AUTHOR]

Background Methods Findings Conclusion This qualitative research explored family caregivers’ engagement and social support in a single online support group (OSG). It sought to answer two research questions: Q1: Was social support evident in the OSG? If so what types and how did these types relate to engagement? Q2: Were elements from the Context, Content and Delivery conceptual framework evident in the OSG? If so, what were the key elements of this group?Eighteen semi‐structured interviews were carried out with members of a family caregiver OSG in Ireland. Data were analysed using deductive qualitative analysis with a codebook created from one typology of social support and the Context, Content and Delivery conceptual framework for engagement in web‐based technologies.For Q1, all types of social support were generated in the OSG. All had a positive impact on engagement. Informational support (17/18 respondents) and emotional support (15/18 respondents) were the highest support experienced by the group. For Q2, we found evidence for 11 key elements of the conceptual framework. Myriad sub‐elements had positive, negative and mixed impacts on engagement. These elements generally related to positive developments of social support by the respondents.Drawing together the findings, we present a new framework, the Journey of Engagement and Support in Online Support Groups for Family Caregivers. This maps the stages for engagement and support in an OSG and can be used by practitioners for running OSG and researchers to generate testable hypotheses about the relationship between social support and engagement. [ABSTRACT FROM AUTHOR]

Background: Understanding the motivations driving family members to continue caring for individuals with Alzheimer's disease is crucial for enhancing social support programs within community health systems. This study specifically explores the factors influencing Iranian family caregivers' ability to persist in their caregiving roles. Methods: This qualitative study was conducted using conventional content analysis with 22 participants in 2022 in Babol (a city in northern Iran). The inclusion criteria for the study included caregivers of Alzheimer's patients who had been the primary caregivers for at least one year for patients with a confirmed diagnosis of Alzheimer's disease. The sampling method was purposive, ensuring maximum variation in social position, demographic status, and stages of Alzheimer's disease after the onset of symptoms. In this research, data were collected from caregivers of Alzheimer's patients through semi-structured interviews and in-depth individual interviews. The data were analyzed using MAXQDA software. Results: One category and four subcategories were identified to explain the continuity of the caring role in family caregivers of Alzheimer's patients. The category was "on the Fence of the Caring Role." The subcategories included Commitment to Care (Being Determined, Being Indebted, Feeling Dutiful), Coercion to Care (Giving in to the Caring Role Due to Family Requirements, Patient Care Due to Financial Problems), Socio-Cultural Beliefs and Concerns (Spiritual and Religious Tendencies, Social Stigma and Social Fears), and Attachment and Love for the Patient (Feeling Pity, Feeling Nostalgia for Kinship). Conclusion: Family caregivers are deeply engaged in their roles, often feeling trapped by various pressures. Recognizing these dimensions can inform policymakers and health practitioners in developing targeted interventions, such as respite care programs, financial support, and community resources, aimed at alleviating caregiver burden and enhancing the quality of care for patients. By addressing the complexities of the caregiver experience, effective strategies can be implemented to support both patients and their caregivers, ultimately improving health outcomes within the community. [ABSTRACT FROM AUTHOR]

Objective: The aims of the study are to describe the use of professional home care in persons with spinal cord injury over a 10-yr period from 2012 to 2022 and to examine how the use of home care is associated with the future occurrence of secondary health conditions and hospitalizations. Design: This is a longitudinal questionnaire survey as part of the Swiss Spinal Cord Injury Cohort Study, conducted in 2012, 2017, and 2022. Results: There were 1549, 1294, and 1158 participants in the three surveys in 2012, 2017, and 2022. The percentage of home care users decreased from 23% in 2012 to 22% in 2017 and 19% in 2022. Fewer home care recipients reported pain (odds ratio 0.52, 95% confidence interval 0.29-0.94), with no reductions in other secondary health conditions, 5 yrs later. Study participants who received home care were more likely to be hospitalized (odds ratio 1.89, 95% confidence interval 1.05-3.42), 5 yrs later. Conclusions: There is a declining trend in the use of home care services among persons with SCI. While home care is associated with lesser development of pain, it does not generally reduce secondary health conditions. Individuals who receive home care are significantly more likely to report hospitalization 5 yrs later. [ABSTRACT FROM AUTHOR]

Background: The Department of Veterans Affairs (VA) has long recognized the importance of having a rich complement of home and community‐based resources for the Veteran population. For Veterans experiencing disability‐related impairments, home‐ and community‐based services (HCBS) facilitate aging in place and alleviate family caregivers' burden. However, even in the enriched VA context, HCBS are underutilized. Our objective was to understand unmet needs and barriers to accessing HCBS from the perspectives of Veterans' family caregivers. Methods: This multi‐method study recruited family caregivers of Veterans seen within a major VA Health Care System. Eligible caregivers provided care for at least 8 h/week in the prior 6 months, to a Veteran with 1+ impairments in instrumental activities of daily living. Recruitment was conducted via flyers, physician referrals, registries, and chart reviews. Participants completed 1‐h semi‐structured interviews to assess unmet psychosocial needs and barriers to accessing VA and non‐VA HCBS. Interviews were analyzed using a thematic analysis approach. Results: A total of 23 caregivers (62.9 + 13.5 years; 74% women; 52.2% White; 26.1% Black; 95.2% pre‐9/11) provided 8.4 ± 6.3 h of daily care. Most had provided care for more than 1 year; nine had cared for their Veteran for 5+ years. The following themes were identified: (1) need for clear, accurate, timely information about HCBS; (2) lack of time, amplified by COVID‐19 restrictions; (3) need for respite to manage their own health and other caregiving responsibilities; and (4) perceived difference in care needs that can strain caregivers' relationship with the care recipient. Conclusions: In addition to known barriers including lack of timely knowledge, service delays, and caregiver stress, Veteran–caregiver disagreements emerged as a novel barrier to using HCBS. A multi‐pronged approach that addresses these barriers may increase timely access to HCBS. See related editorial by Nathan A. oucher [ABSTRACT FROM AUTHOR]

Purpose: Family caregivers (FCGs) play a pivotal role in supporting patients in palliative care at home. Person-centred support is crucial to prevent negative outcomes; therefore, evidence-based approaches such as the Carer Support Needs Assessment Tool Intervention (CSNAT-I) are promising. To understand more about the delivery of the intervention, the study focuses on documentation of CSNAT-I in practice in Austria to identify which support needs were discussed with the FCGs and the types of support delivered to meet these needs. Methods: A retrospective analysis of electronic records was conducted, focusing on documented entries related to the delivery of CSNAT-I over a 21-month period (Dec 2019 to Aug 2021). Both qualitative and quantitative methods were employed for data analysis. Results: The analysis identified a wide spectrum of FCG support needs, categorised into enabling domains related to caregiving for the patient and direct support needs concerning FCGs’ own health and well-being. The most frequently documented support needs included ‘having time for oneself in the day’ and ‘dealing with feelings and worries’, highlighting the challenges FCGs face in balancing caregiving responsibilities with personal life. Supportive input encompassed advice and information, counselling, education and training, coordination and arrangement, and signposting and referral. Conclusion: The study stresses the importance of addressing both practical and psychosocial aspects of caregiving, utilising a person-centred approach. Nurses provided comprehensive support mostly directly delivered during their contact with FCGs. CSNAT-I demonstrated flexibility, accommodating the diverse needs of FCGs in different situations, and may contribute to a more supportive care environment. [ABSTRACT FROM AUTHOR]

Aim: To synthesize evidence regarding the effectiveness of technology‐based psychosocial interventions in improving health‐related outcomes among family caregivers of stroke survivors. Design: A systematic review and meta‐analysis was reported by the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Methods: Randomized controlled trials that investigated the effects of psychosocial interventions delivered through information and communication technologies on self‐efficacy, caregiving competence, caregiver burden, perceived social support, anxiety, depression, health‐related quality of life and cost‐effectiveness were included. Two researchers independently selected studies, extracted data, and appraised the quality of the included studies. Subgroup analysis, sensitivity analysis, and narrative synthesis were conducted. Data Sources: Ten electronic databases (PubMed, CENTRAL, Web of Science, Scopus, CINHAL, Embase, Institution of Electrical Engineers Xplore, Ovid Medline, PsycINFO, ProQuest Dissertations and Thesis) were searched up to February 2023. Results: Nineteen studies involving 1717 participants fulfilled the eligibility criteria. Technology‐based psychosocial interventions significantly improved self‐efficacy (SMD =.62), caregiving competence (SMD =.55), depression (SMD = −.25) and anxiety (SMD = −.35). However, perceived social support, caregiver burden, and health‐related quality of life did not show significant improvements. Subgroup analyses revealed that the interventions, lasting from 4 to 6 weeks and encompassing comprehensive contents, exhibited larger effect sizes. None of the studies measured cost‐effectiveness. Conclusion: The technology‐based psychosocial interventions are effective in enhancing self‐efficacy and caregiving competence, as well as alleviating anxiety, and depression among family caregivers of stroke survivors. Future research should investigate interventions delivered through various digital platforms using well‐designed RCTs with in‐depth qualitative data collection and measurement of health and cost‐effectiveness outcomes. Impact: Through psychosocial interventions, healthcare providers in clinical and community settings, particularly nurses, could incorporate technologies into current stroke care practices. Patient or Public Contribution: It is not applicable as this is a systematic review. Registration: The protocol was registered on PROSPERO (CRD42023402871). [ABSTRACT FROM AUTHOR]

We studied levels of awareness of impending death in older patients and their family caregivers. Using a mixed methods approach, we interviewed 70 family caregivers in Israel. Of the caregivers, 64% reported having been aware of the impending death, 33% were unaware, and 3% uncertain. Caregivers reported their perception that 36% of patients were aware, 27% unaware, and for 37% they were uncertain about the patient's awareness. Mechanisms that increased caregivers' awareness were specific diagnosis, significant deterioration in health, preparation by a health professional, or patient preparations for death. This study clarifies processes which aid awareness, and the relationship between awareness and actual preparation for dying. [ABSTRACT FROM AUTHOR]

Background: Caring for a person with dementia can be a challenging experience, often associated with chronic stress and a heavy burden on family caregivers. Dementia also impacts the relationship between the caregiver and the person with dementia. The quality of this relationship is, in turn, an important factor influencing the well-being of both dyad members. The psychoeducational intervention "Learning to feel better... and help better" has shown positive results regarding family caregivers' subjective burden, psychological distress, and self-efficacy. However, relationship quality has not been addressed in the context of this intervention. Methods: A longitudinal constructivist grounded theory approach was used to explore relationship quality as perceived by caregivers, possible changes and intervention components facilitating or preventing such changes. Three qualitative, semi-structured interviews (before, during and after the intervention) were performed with 13 family caregivers from three different intervention groups. The resulting 39 interviews were analysed regarding individual caregiver trajectories, per time point for all caregivers and regarding specific caregiver subgroups. Findings: A model focusing on sustaining relationship quality in dementia was developed. It shows strategies that family caregivers develop and apply to facilitate positive interactions and feelings of connectedness with their family members with dementia. It also indicates that mastering such strategies requires reflective skills based on specific knowledge of dementia and coping strategies, which can be enhanced through active skills training, in which caregivers are guided to work on their individual stressful situations. Factors hampering change included difficulties in accepting dementia-related changes. Conclusion: Findings suggest that psychoeducation, with active skills training based on caregivers' current daily life situations, providing systematic procedures to handle daily challenges and specific knowledge about the impact of the disease, could support them in developing and applying supportive strategies to sustain or improve their relationship to their family member with dementia. [ABSTRACT FROM AUTHOR]

Background: Serious mental illness (SMI) is a debilitating medical condition that causes stress and challenges for the family caregivers (FCs) of affected patients, increasing their caregiver burden (CB). This situation can activate attachment styles (AS) and trigger negative emotions, further contributing to CB. Given that AS and cognitive-emotional regulation (CER) can affect the CB of FCs of patients with SMI, the aim of this study was to evaluate the relationship between CB with AS, and CER among the FCs. Methods: This cross-sectional descriptive-correlational study was carried out in May–November 2022. Participants were 278 FCs of patients with SMI consecutively recruited from Roozbeh leading psychiatric hospital, Tehran, Iran. Data were collected using a patients' demographic and clinical characteristics questionnaire, an FCs' demographic characteristics questionnaire, the Attachment Style Questionnaire, the Cognitive Emotion Regulation Questionnaire, and the Burden Scale for Family Caregivers, and were analyzed using the SPSS software (v. 16.0). Results: CB had significant inverse relationship with secure AS (r = − 0.262) and significant positive relationship with fearful AS (r = 0.194) and dismissive AS (r = 0.242) (P < 0.01). Moreover, CB had significant inverse relationship with adaptive CER strategies and significant positive relationship with maladaptive CER strategies (P < 0.001). Regression analysis also showed that CB had significant relationship with secure AS and catastrophizing, rumination, self-blame, and positive refocusing CER strategies (P < 0.05). Conclusion: This study concludes that AS and CER can impact CB. There is a negative relationship between secure AS and CB, as well as between adaptive CER strategies and CB. Conversely, there is a positive relationship between avoidant AS and increased CB, as well as between maladaptive CER strategies and CB. It is recommended to adopt strategies that promote the use of secure AS and adaptive CER among the FCs of patients with SMI. [ABSTRACT FROM AUTHOR]

AbstractObjectivesMethodResultsConclusionKorean-American primary family caregivers of individuals with Alzheimer’s disease and related dementias (ADRD) may face unique stress, attributable to the distinctive characteristics of Korean-Americans, including their immigration history, culture, and language. Using narrative inquiry, we explored caregiving experiences, focusing on stress, and identified factors contributing to stress among Korean-American family caregivers providing in-home care to individuals with ADRD.We conducted one-on-one, semi-structured interviews with 15 Korean-American family caregivers of individuals with ADRD. We analyzed the participants’ stress in the context of temporality (i.e. timelines of their caregiving), sociality (i.e. cultural and familiar contexts), and place (i.e. various life settings).The majority of participants were female (73%), Korean-born immigrants (93%), and had relatively high levels of education with an average of 16 years of education. We found that 1) caregivers’ stress continued but varied along the ADRD caregiving trajectory, 2) cultural expectations and relationship dynamics amplified stress levels, and 3) maintaining a Korean identity while living in the United States limited caregivers’ social connections.Our findings highlight the nuances of stress among Korean-American ADRD family caregivers. Specific support needs should be addressed in the development of culturally tailored stress reduction interventions for this understudied population. [ABSTRACT FROM AUTHOR]

ABSTRACT Aim Design Methods Results Conclusion Impact Reporting Method Patient or Public Contribution To explore the stakeholders' perspectives and develop a conceptual framework for promotion strategies to implement the iSupport‐based intervention for family caregivers of people with dementia.A descriptive qualitative design was adopted.Semi‐structured interviews were conducted with 49 stakeholders of people with dementia from July to December 2023. The Consolidated Framework for Implementation Research was applied to guide the development of the interview guide, data collection and analysis. Directed content analysis was employed to identify facilitators and barriers, with data analysed based on the framework and the established its codebook. These findings were then summarised into a conceptual framework of critical components.The identified 16 barriers and 28 facilitators were distributed across all Consolidated Framework for Implementation Research domains. All facilitators and barriers were integrated into a conceptual framework guiding the implementation of iSupport. This four‐tier, eight‐component conceptual framework guides the global promotion of the web‐based dementia care model, covering state, society, hospitals, individuals and strategies. The components included comprehensive and balanced national medical guidelines, a friendly social culture, adequate hospital collaboration, cooperative healthcare workers, responsible family caregivers, a comprehensive intervention system, appropriate learning content and digital health support.The ‘iSupport for Dementia’ program is seen positively for its potential to improve dementia care by providing mental and technical support to family caregivers. Successful implementation requires addressing barriers, enhancing facilitators and adapting to China's conditions and policies. Mobilising local healthcare resources and gaining stakeholder recognition is crucial. This approach may help develop a localised version of iSupport that suits the needs and habits of Chinese family caregivers, with the potential for broader dissemination.The ‘iSupport for Dementia’ program could greatly improve dementia care in China by addressing barriers and utilising facilitators. This study offers critical insights for future policy development and effective implementation strategies.Adherence to the COREQ guidelines for reporting qualitative research was maintained.No patient or public contribution. [ABSTRACT FROM AUTHOR]

ABSTRACT Family caregivers of persons with mild cognitive impairment attempt to understand the behavioural and functional changes exhibited by their relative. However, how caregivers respond to initial changes and changes over time has not been explored. The purpose of this qualitative study was to explore the experience of family caregivers responding to changes in their relative's memory, behaviours, and physical functions over 2 years. Eleven family caregivers of a relative with mild cognitive impairment were purposively recruited from neurological clinics in Taiwan. Face‐to‐face semi‐structured interviews were conducted within 6‐months of referral; three follow‐ups were conducted at 6‐month intervals. Content analysis of 41 transcribed audio‐recorded interviews revealed the longitudinal changes in their relative with cognitive impairment was made caregiving challenging. Three themes described the challenges: (1) Changes related to their relative's cognitive impairment, which included increases in mood fluctuations, erratic behaviours, and reductions in physical abilities; (2) changes in their relative's comorbidities, which included adapting to new symptoms and treatments for a chronic disease, monitoring medication adherence and drug interactions; and (3) changes in caregiver burden, which increased levels of stress, uncertainty, and anxiety resulting in greater role strain. Caregiving became more challenging with time, especially caregivers whose relative developed dementia during the study period. These findings offer insight into the trajectory of the experience of family caregivers attempting to understand changes in cognition, behaviours, and physical functions for their relative with mild cognitive impairment over 2 years, which could help mental healthcare providers develop support services to reduce caregiver role strain. [ABSTRACT FROM AUTHOR]

Background: Caregiver stress can pose serious health and psychological concerns, highlighting the importance of timely interventions for family caregivers of people with dementia. Single-session mindfulness-based interventions could be a promising yet under-researched approach to enhancing their mental well-being within their unpredictable, time-constrained contexts. This trial will evaluate the effectiveness and feasibility of a blended mindfulness-based intervention consisting of a single session and app-based follow-up in reducing caregiver stress. Methods/Design: The study is a single-blinded randomized controlled trial with two arms (intervention versus an education session on dementia care) and assessments at baseline, 8 weeks, and 6 months. The eligibility criteria include: family caregivers aged 18 years or older; providing care for an individual with a confirmed medical diagnosis of dementia for at least 3 months prior to recruitment, with a minimum of 4 hours of daily contact; and exhibiting a high level of caregiver stress. The intervention comprises a 90-minute group-based session with various mindfulness practices and psychoeducation. Participants will receive a self-practice toolkit to guide their practice over a duration of 8 weeks. Sharing activities will be implemented through an online social media platform. The primary outcome is perceived caregiving stress. The secondary outcomes include depressive symptoms, positive aspects of caregiving, dyadic relationship, trait mindfulness, and neuropsychiatric symptoms of care recipients. The feasibility outcomes include eligibility and enrollment, attendance, adherence to self-practice, and retention, assessed using mixed methods. Discussion: The study will contribute to the evidence base by investigating whether a single-session mindfulness intervention is effective and feasible for reducing caregiver stress among family caregivers of people with dementia. Trial registration: ClinicalTrials.gov, NCT06346223. Registered on April 3, 2024. [ABSTRACT FROM AUTHOR]

Informal caregivers of older adults usually suffer from loneliness, which makes them vulnerable to reduced health outcomes. This study attempted to explore whether internet usage mitigates the effects of loneliness on subjective health among informal caregivers of older adults. A sample of 1089 informal caregivers (mean age = 58.0 ± 15.7 years, 60.3% females) providing unpaid cares for older adults in the United States were investigated. Their loneliness, subjective health, and utilization of caregiving-related online resources were measured. Descriptive statistics and correlation analyses were conducted to summarize the sample’s characteristics and determine the relationships among the study variables, respectively. Finally, a multivariate regression analysis with an interaction term was performed to test the moderating effect of internet usage. Results indicated that loneliness was significantly negatively associated with subjective health. Furthermore, after controlling for demographic and caregiving-related factors, the moderating effect of internet usage on the link between loneliness and subjective health was significant, namely, the negative association between loneliness and subjective health was less pronounced at higher levels of internet usage. Hence, in addition to alleviating loneliness, providing caregiving-related online services and promoting positive utilization of resources on the internet may be potential intervention targets to improve informal caregivers’ health. [ABSTRACT FROM AUTHOR]

ABSTRACT Aim Background Design Method Results Conclusions To explore the experiences and perceptions of communication about managing medication across transitions of care for residents living in aged care homes and their family caregivers.Effective medication communication across transitions of care involves exchanging information, resident, and family caregiver's participation in decision‐making, and shared responsibility.A qualitative meta‐synthesis.This review was conducted in accordance with the PRISMA 2020 guidelines and the accompanying 27‐item checklist. A systematic search of seven electronic databases (Embase, PsycINFO, Medline Ovid, Scopus, CINAHL, EmCare and Web of Science) was performed from inception to December 2023. Studies eligible for inclusion in this review were required to be published in peer‐reviewed English journals and focus on medication communication among healthcare providers, residents and family caregivers during transitions of care for aged care residents. The JBI Critical Appraisal Checklist for Qualitative Research was employed for the critical appraisal of the studies, and the COREQ checklist was used to evaluate their quality.Of the 2610 studies identified, 12 met the inclusion criteria. No study was excluded based on quality. Two main themes were generated: (1) Medication information exchange involving residents and families, and (2) resident and family factors influencing medication communication engagement. The findings revealed a lack of supportive structure for effective communication and collaboration among residents, family caregivers and healthcare providers during transitions of care, marked by one‐way interactions and limited evidence of shared decision‐making or family caregiver engagement in medication management communication, despite varying individual needs and preferences.Communication about medication management during transitions of care focused on sharing details rather than active engagement. Residents and their family caregivers have individual needs and perspectives regarding communication about medication management, which are not well addressed by healthcare providers during transitions of care. Healthcare providers' communication remains limited, and family caregivers are underutilised. [ABSTRACT FROM AUTHOR]

Family caregivers provide the majority of long-term care and support of older adults as they age or approach the end of life. Studies often refer to family caregivers as invisible because the American healthcare system, public policy, and society do not support or recognize their work. Family caregivers who provide care to older adults who live in rural areas face unique challenges due to the rural environment. The purpose of this study was to inductively develop a theoretical framework that explains the process of family caregiving to older adults who live at home in rural areas and require daily assistance while exploring their experiences regarding access, utilization, challenges, and effectiveness of patient healthcare services and caregiver resources in rural areas. The grounded theory method of Strauss and Corbin was used for sampling, data collection, and data analysis. Fifteen family caregivers who oversaw and/or provided care on a daily basis to an older adult living in two rural counties of New York State participated in the study. Data were collected through two semi-structured interviews with each participant, yielding 30 interviews. Findings revealed that family caregivers engaged in the process of orchestrating care by growing into caregiving, integrating technology, and utilizing networks when providing and managing caregiving. Understanding caregiving from the perspective of family caregivers engaged in the process can inform healthcare practice, healthcare education, and public policy and can support better outcomes for both older adults and their family caregivers. [ABSTRACT FROM AUTHOR]

Background: Suicide and self-harm are global disease burden that contributes significantly to years of lost life and mortality. Despite the increasing rates of suicide and self-harm in Nigeria, this topic is understudied. Methods: A mixed-methods design was adopted. Study 1 interviewed n = 18 participants (n = 11 clinicians; n = 5 patients with a history of self-harm and suicide ideation; and n = 2 caregivers). All interviews were audio-recorded, transcribed verbatim, and analyzed using IPA. Study 2 surveyed n = 562 non-clinical sample about their tolerance toward self-harm and the data was analyzed using One-way ANOVA in SPSS. Results: Study 1 qualitative findings showed substance use, perceived rejection and social isolation were considered predisposing factors for suicide and self-harm. Cultural and religious beliefs shaped help-seeking behaviours. Although Study 2 found no significant differences in demographic characteristics concerning public tolerance toward persons with a history of self-harm, 64% believed that individuals who died by suicide would face punishment after death; 51% believed that victims of attempted suicide are a source of shame to their families; and 33.8% agreed that dying by suicide is the correct behaviour. Conclusions: Patients with a history of self-harm and suicidal ideation consider family members and close friends as valuable sources of support. Due to the potential clinical implication of cultural and religious beliefs, as shown in the present study's findings, the authors recommend a co-development of culturally appropriate psychological intervention for persons with a history of self-harm and suicidal ideation to be tested in randomized control trials. [ABSTRACT FROM AUTHOR]

Many people want to spend the last stages of their lives at home, in familiar surroundings, and possibly with people they know. However, this increasing desire on the part of older, ill, or even dying people also makes support from other people unavoidable, which in many cases involves family members, loved ones, or even friends. These family caregivers care for the person concerned, even though they lack the professional skills of nursing staff, for example, and have usually not been prepared for this task. This article focuses on the ethical significance of the moral identity of family caregivers. While the effects of this care constellation on the caregivers have often been discussed in the scientific literature, ethical considerations regarding moral identity have so far been neglected. In the first step, the question of what is actually meant by the term moral identity is examined. The second step shifts attention to those people who have taken on the care of a loved one. The relevance of this previously discussed identity is emphasized by using study results and work in this context, and placed in relation to family caregivers. The third step shows that (1) moral identity must be understood as a necessary prerequisite for adequate and humane care, (2) this identity can be enhanced through the caregiving relationship, and (3) the activities undertaken by family caregivers reveal their moral identity. These considerations are finally summarized, provided with ethical aspects, and awareness of this important work of family caregivers is raised. [ABSTRACT FROM AUTHOR]

Chinese family caregivers of people with dementia (PWD) can suffer from physical and psychological burden. This study aimed to examine the effects of logotherapy-based interventions on Chinese family caregivers of older adults with dementia to decrease caregiver burden. This mixed-methods study used a pre-experimental design with pre-posttests and semi-structured interviews. A purposive sample of 13 family caregivers from a suburban district in Shanghai was enrolled with (1) caregiver burden and (2) access and capability to use smart devices. Participants received eight online group logotherapy sessions with a focus on hope and meaning construction. Participants completed the Zarit Burden Interview, a 22-item measure of caregiver burden, before and after the intervention, and a 30-min semi-structured interview post-intervention. From the quantitative data, dementia caregivers reported severe caregiving burdens at the baseline (M = 54.77, SD = 9.33). Caregiver burden significantly decreased after the logotherapy-based intervention (M = 52.15, SD = 8.80, p <.001). Two themes pertaining to participants' experiences in intervention emerged from the qualitative data: (1) improved attitudes toward suffering, and (2) enhanced sense of meaning in life and hope. The cultural relevance of logotherapy to Chinese familism and Confucianism may further enhance its feasibility in the Chinese context. [ABSTRACT FROM AUTHOR]

Background: The family caregivers as primary caregivers play a crucial role regarding the care of cancer patients. As defined in the literature, the care burden encompasses the negative objective and subjective outcomes including psychological and physical health problems, economic and social issues, deterioration of family relationships and feelings of loss of control that arise from caregiving responsibilities. Aims: This study aims to assess the care burden and to evaluate the associated factors among family caregivers of cancer patients receiving treatment at a state hospital in Türkiye. Methods: This cross‐sectional study was conducted with the family caregivers of patients undergoing treatment in the radiation oncology department of a state hospital in Türkiye. The study population consisted of 350 individuals, with a participation rate of 80%. Participants were administered a questionnaire concerning determining daily living activities and identifying the caregiving burden through their socio‐demographic characteristics. Results: The care burden among primary family caregivers while the delivery of health services was severe for 85.1% of them. The average ZBI score of caregivers was 55.92 ± 14.58. It was clarified that family caregivers' burden was influenced by several factors, including the duration of caregiving, difficulties experienced while caring for the patient, and the negative impact on their daily roles. Conclusion: Our study's findings indicate the need for health professionals to support caregivers of cancer patients while over half of the caregivers were identified as having a severe level of caregiving burden. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs. Impact: This study's findings highlight the need to identify and problems faced by family members during caregiving. This is important for sustainable and cost‐effective holistic care. Reporting Method: The results of this study are reported based on the guidelines of The Strengthening the Reporting of Observational Studies (cohort, case–control studies, cross‐sectional studies) in Epidemiology (STROBE). Implications for practice: Our study's findings indicate the need for health professionals to support caregivers of cancer patients. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs. [ABSTRACT FROM AUTHOR]

Objectives The purpose of this paper is to evaluate the mechanistic process by which family caregivers' situational stress appraisals of behavioral symptoms of dementia (BSD) increase the likelihood of a caregiver engaging in abusive and neglectful behaviors toward their care recipient with dementia. We test the hypotheses that (1) the effect of daily BSD stress appraisals on elder abuse and neglect (EAN) is mediated by the caregivers' emotion dysregulation (2) and the mediation path is moderated by self-compassion. Methods This study employed a multitime series design in which participants (N  = 453) completed traditional longitudinal surveys at enrollment followed by 21 sequential days of diary surveys (n  = 9,513). The hypothesized moderated mediation path was evaluated through a multilevel structural equation model. Results Hypotheses were supported. At the within-person level, daily BSD stress appraisal has a significant direct effect on daily EAN. At the between-person level, the path was no longer significant implying a full mediation of emotion dysregulation. The main effect of self-compassion and the interaction term (emotion dysregulation × self-compassion) were also statistically significant indicating the path between emotion dysregulation and EAN is moderated by self-compassion. Discussion This study significantly advances the field by empirically showing a mechanistic pathway for a theoretical explanation of EAN. These findings represent a breakthrough for the field and identify modifiable intervention targets for future behavioral interventions to prevent EAN. Emotion (dys)regulation and self-compassion are modifiable traits and skills that can be learned, with robust evidence bases of efficacious interventions that can be adapted for context to dementia family caregiving. [ABSTRACT FROM AUTHOR]

Background: Alzheimer's disease and related dementias (ADRD) are progressive conditions. Family caregivers of patients, especially those caring for patients with ADRD exhibiting behavioral and psychological symptoms of dementia (BPSD), undergo significant physical and mental changes during long-term care. While most researchers have focused on the specific needs of family caregivers, the comprehensive understanding of these needs is limited. In this study, Alderfer's existence, relatedness, and growth theory was used to develop an interview framework to systematically and comprehensively understand the needs of family caregivers of individuals with ADRD. Objective: The objective of this study was to understand family caregivers' needs in coping with BPSD in individuals with ADRD, aiming to alleviate caregivers' stress and promote their overall well-being. Methods: This study used a hermeneutic–phenomenological interview research design. Data were collected via remote conferences involving interviews with 17 participants selected via maximum variation sampling. The Colaizzi seven-step method was utilized, and the interview contents were analyzed using NVivo 12.0 software. Results: The needs of family caregivers in coping with the BPSD of individuals with ADRD could be summarized into three themes, namely existence needs, relatedness needs, and growth needs, and 10 sub-themes. Conclusions: The study findings provide new insights into the needs of family caregivers in coping with patients exhibiting BPSD. Family caregivers experience significant negative emotions, poor caregiving experiences, heavy caregiving burdens, and a desire for professional assistance and policy support. [ABSTRACT FROM AUTHOR]

Purpose: This scoping review was conducted to synthesize existing literature into a map of the common needs of families caring for patients with traumatic brain injury (TBI) at home. Materials and methods: A systematic search of studies published between January 2012 and December 2022 was conducted across databases. The selected studies reported the needs or unmet needs of patients with TBI and/or their family caregivers (FCs). Results: A total of 12 publications were identified. The results suggest that the common needs of families caring for patients with TBI at home include: information about TBI as a disease; information about the continuum of TBI healthcare services; information about adaptive technologies; education and skilling of FCs; psychological support and counseling; physical and occupational therapy services; follow-up care and transitional care management; respite care; peer support; financial assistance, advocacy, and legal services; emotional support from the family and community; and assistance with physical patient care and instrumental activities of daily living. Conclusion: The mapped needs provide insight into supportive interventions required to enhance the health outcomes of patients with TBI and their families during and after rehabilitation. The needs also highlight directions for research and healthcare services for patients with TBI. Implications for Rehabilitation: The families caring for patients with traumatic brain injury at home end up living in situations characterized by multiple unmet needs, and these can be a source of poor health outcomes for the family and patients with traumatic brain injury. The identified needs of families caring for patients with traumatic brain injury reveal gaps in the discharge planning and care coordination after acute and rehabilitation care. Addressing these needs requires a multidisciplinary approach and planning. Interventions using a holistic approach to address the identified needs may significantly improve the health outcomes of patients with traumatic brain injury and their families. [ABSTRACT FROM AUTHOR]

Background Digital health interventions show potential to increase caregivers' access to psychosocial care; however, it is unclear to what extent existing interventions may need to be tailored to meet caregivers' unique needs. Purpose This study aimed to determine whether—and if so, how—an efficacious Internet-delivered insomnia program should be modified for caregivers. The generalizability of these findings beyond the tested program was also examined. Methods Higher-intensity family caregivers (N = 100; age M = 52.82 [ SD = 13.10], 75% non-Hispanic White, 66% ≥college degree) received access to an Internet-based cognitive-behavioral therapy for insomnia (CBT-I) program. Participants who completed one or more intervention "Cores" provided open-ended feedback on their experience; nonusers (completed no Cores) shared their barriers. Results Most caregivers who used the program (n = 82, 82%) found it feasible, citing its user-friendly, fully automated online format. Many reported that CBT-I strategies were helpful, although some faced challenges in implementing these strategies due to the unpredictability of their caregiving responsibilities. Opinions were divided on the utility of tailoring the program for caregivers. Nonusers (n = 18, 18%) primarily cited concerns about time burden and lifestyle compatibility as usage barriers. Conclusions Delivering fully automated behavioral interventions through the Internet appears suitable for many caregivers. Extensive tailoring may not be required for most caregivers to benefit from an existing online CBT-I program, although additional guidance on integrating CBT-I strategies in the context of challenging sleep schedules and environments may help a subset of caregivers. Future research should explore how such tailoring may enhance digital health intervention uptake and effectiveness for caregivers. [ABSTRACT FROM AUTHOR]

Background Delivering insomnia treatment by the Internet holds promise for increasing care access to family caregivers, but their ability to adhere to and benefit from such fully-automated programs has not been rigorously tested. Purpose This fully-powered, single-group trial tested whether characteristics of the caregiving context influence high-intensity caregivers' engagement with and benefit from an empirically validated Internet intervention for insomnia. Methods At baseline, caregivers providing unpaid time- and responsibility-intensive care who reported insomnia (N = 100; age M = 52.82 [ SD = 13.10], 75% non-Hispanic white, 66% ≥college degree) completed questionnaires about caregiving context and sleep, then 10 prospectively-collected online daily sleep diaries. Caregivers then received access to SHUTi (Sleep Healthy Using the Internet), which has no caregiver-specific content, for 9 weeks, followed by post-assessment (questionnaires, diaries). Engagement was tracked by the SHUTi delivery system. Results Sixty caregivers completed SHUTi, 22 initiated but did not complete SHUTi, and 18 did not initiate SHUTi. Caregivers were more likely to use SHUTi (than not use SHUTi) when their care recipient (CR) had worse functioning, and were more likely to complete SHUTi when supporting more CR activities of daily living (ADL; p s < .03). Higher caregiver guilt, more CR problem behaviors, and being bedpartners with the CR related to more improved sleep outcomes, whereas supporting more CR instrumental ADL related to less improvement (p s < .05). Conclusions Factors associated with greater caregiving burden, including greater CR impairment and caregiving guilt, were generally associated with better engagement and outcomes. Caregivers with substantial burdens can adhere to and benefit from a fully automated insomnia program without caregiver-specific tailoring. [ABSTRACT FROM AUTHOR]

• What is the primary question addressed by this study? What factors influence intervention adherence among family caregivers of people with dementia? • What is the main finding of this study? The study uncovered predictors of intervention adherence among dementia caregivers, providing insights into dropout rates and reasons behind them, thereby informing the design and implementation of more effective online treatments. Specifically, the findings emphasized the necessity of tailoring interventions to address the specific shared needs of caregivers, highlighting the importance of integrating social component features, such as human-based interaction, with comprehensive discussions on their implications. • What is the meaning of the finding? Understanding predictors of intervention adherence can inform the development of more effective and tailored online interventions for dementia caregivers in research and clinical practice, enhancing support and ultimately improving dementia care outcomes. Online interventions hold promise in supporting the well-being of family caregivers and enhancing the quality of care they provide for individuals with long-term or chronic conditions. However, dropout rates from support programs among specific groups of caregivers, such as caregivers of people with dementia, pose a challenge. Focused reviews are needed to provide more accurate insights and estimates in this specific research area. A meta-analysis of dropout rates from available online interventions for family caregivers of people with dementia was conducted to assess treatment acceptability. A systematic search yielded 18 studies involving 1,215 caregivers. The overall pooled dropout rate was 18.4%, with notable heterogeneity indicating varied intervention adherence. Interventions incorporating human contact, interactive features, and personalization strategies for specific types and stages of dementia predicted significantly lower dropout rates. Methodological assessment revealed variability in study quality. Findings support the effectiveness of social support, personalization strategies, and co-design in enhancing intervention adherence among dementia family caregivers. Further research is needed to explore factors influencing dropout rates and conduct robust trials to refine the implementation of future interventions. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes. Methods: In this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy. Results: Patients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning. Conclusions: A mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing. Trial Registration: ClinicalTrials.gov NCT03257007. Registered 22 August 2017, https://clinicaltrials.gov/ct2/show/NCT03257007. [ABSTRACT FROM AUTHOR]

Background: The transition of family caregivers of patients with end-of-Life cancer receiving palliative care from hospital to home is a complex and challenging process. This phase of care involves not only the physical and psychological health of the patient but also the role adaptation and emotional support of the family caregivers. To gain a deeper understanding of the various experiences and feelings during this process, we conducted a qualitative study. Methods: This study employed a descriptive phenomenological research method. The interviews focused on the specific experiences, challenges faced, support received, and coping strategies of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care. All data were treated with strict confidentiality, and recordings and transcriptions were made with the participants' consent. Results: A total of 15 family caregivers participated. Four main themes and nine sub-themes were identified: complex transition process (anxiety about uncertainty, resistance to transition), discontinuity in care (insufficient discharge guidance, lack of continuous communication mechanisms), post-discharge continuous care needs (need for home care knowledge and skills, social and emotional support, grief counselling and death education), and personal growth and gains (enhanced coping ability, increased psychological resilience). Conclusion: Family caregivers face numerous emotional, cognitive, practical, and social support challenges during the transition from hospital to home care. To improve the caregiving experience and quality of life, appropriate training and support should be provided to better meet the caregivers' needs. [ABSTRACT FROM AUTHOR]

Background: 'Learning to feel better... and help better' is a psychoeducational intervention that aims to empower family caregivers of people with dementia by helping them cope better with the daily stress of dementia caregiving. The intervention has been adapted to a Swiss context and evaluated with a mixed-method design, yielding promising results in caregivers, such as a reduced subjective burden and improved self-efficacy. Qualitative findings have provided insight into potentially relevant intermediate changes that must be further explored to better understand how the intervention precipitates the achieved changes. We aim to qualitatively explore such changes, related mechanisms and key intervention components in the context of this intervention. Methods: A constructivist grounded theory approach was used to achieve this aim. Changes, related mechanisms and key intervention components were identified by exploring the following: 1) longitudinal qualitative data, collected from 13 family caregivers via interviews performed before, during and after the intervention (39 interviews total) and 2) cross-sectional post-intervention interview data collected from 22 family caregivers (22 interviews). Results: Experiencing calmness was the most important change for caregivers in the context of this intervention. The calmness model, developed based on the qualitative analysis, illustrates the intermediate changes that contributed to calmness, such as being able to cope with daily life and experiencing positive interactions with the family member with dementia. Related key intervention components were the coping strategy 'reframing', employed in diverse ways by the caregivers to reduce daily stress, and the didactic method 'active skills' training', which involved active participation by the caregivers and the guidance of a professional group leader. One important factor hampering changes in caregivers was having difficulties accepting the caregiver role or accepting the losses due to dementia. Conclusion: The calmness model offers valuable insight into how this intervention can benefit family caregivers and aid in developing interventions targeting similar mechanisms and changes. Trial registration: ISRCTN13512408 (registration date 17.05.2021, retrospectively registered). [ABSTRACT FROM AUTHOR]

The current study examined differences in caregiver burden and quality of life between compound caregivers (those who are providing care for more than one person) and noncompound caregivers (those caring for a single adult with autism). A national sample of 320 parents (50+) of an adult child (18+) diagnosed with autism spectrum disorder was divided into two groups: compound caregivers (n = 108) and noncompound caregivers (n= 212). Most compound caregivers were providing care for another child, with 30 reporting they were caring for their parents. A negative correlation was found between caregiver burden and quality of life. While caregiver burden was greater for compound caregivers, quality of life was similar for both groups of caregivers. Compound caregivers experienced greater developmental burden, but less financial burden than noncompound caregivers. Specific attention should be directed at developing mechanisms to support family caregivers to offset caregiver burden that increases when caring for additional loved ones. [ABSTRACT FROM AUTHOR]

Background: Anticipatory grief is common among family caregivers of cancer patients and may be related to caregiver burden, family resilience, psychological capital, cognitive appraisal, and coping strategies. The purpose of this study was to examine the mediating role of cognitive appraisal and coping strategies in the relationship between caregiver burden, family resilience, psychological capital, and anticipatory grief among caregivers of cancer patients. Methods: This study surveyed from January to September 2023 among 265 caregivers of lung and breast cancer patients in two public hospitals. They completed measures of caregiver burden, family resilience, psychological capital, cognitive appraisal, coping, and anticipatory grief. AMOS software was used to model the data with Bayesian structural equation modeling. Results: Bayesian structural equation modeling results showed that caregiver burden had a direct effect on anticipatory grief. The chain mediating effects for cognitive appraisal tendency and coping tendency between caregiver burden, family resilience, psychological capital, and anticipatory grief, respectively. Coping tendency acted as a mediator between psychological capital and anticipatory grief. Conclusions: The relationships between caregiver burden, family resilience, and psychological capital with anticipatory grief are embedded in the mediating effects of cognitive appraisal and coping. Early identification and intervention for caregiver burden, family resilience, psychological capital, cognitive appraisal, and coping methods may prevent anticipatory grief in caregivers of cancer patients. [ABSTRACT FROM AUTHOR]

ABSTRACT Aim Design Methods Results Conclusions Implications for the Profession and/or Patient Care Impact Patient or Public Contribution Reporting Method To assess the impact of digital picture books on preoperative anxiety, pain and sleep quality in young children undergoing cardiac catheterisation and the anxiety of their family caregivers.A randomised, single‐blinded, two‐arm, parallel‐group controlled trial.Participants are young children aged 2–7 years with congenital heart disease scheduled for cardiac catheterisation and their family caregivers. They were enrolled at Fujian Medical University Union Hospital between September 2022 and July 2023. They were randomised to either a control group receiving usual care or an intervention group receiving digital picture book sessions. Anxiety and pain levels were assessed using standardised scales, and sleep quality was measured using actigraphy.The study included 64 pairs of young children and family caregivers. Digital picture books significantly reduced preoperative anxiety and bandage removal pain in children and anxiety in family caregivers. However, there was no statistical difference in sleep quality between the intervention group and the control group.Digital picture books prove to be an effective intervention for reducing anxiety and pain in paediatric cardiac catheterisation patients and anxiety of their family caregivers. The intervention did not affect sleep quality, suggesting the need for additional strategies to address this aspect of the hospital experience.This study demonstrated the effectiveness of digitally illustrated books in reducing preoperative anxiety and pain in young children and anxiety in family caregivers. Digital picture books offer a creative and engaging way to help children and their families cope with the stress and anxiety associated with medical procedures. Further research in this area may lead to the development of more innovative and effective interventions for paediatric patients and their family caregivers.The study's impact lies in its innovative approach to addressing the psychological and emotional challenges faced by young children and their family caregivers during the stressful experience of cardiac catheterisation. By demonstrating the efficacy of digital picture books in significantly reducing preoperative anxiety and postoperative pain, the research presents a non‐pharmacological, accessible and engaging intervention that can be seamlessly integrated into existing healthcare practices. The findings have the potential to transform paediatric care by offering a safe, developmentally appropriate and cost‐effective method to support the emotional well‐being of children and their families, thereby enhancing the overall patient experience and clinical outcomes. Moreover, the study's emphasis on family caregiver involvement underscores the importance of a holistic approach to care that considers the needs of both the patient and their support system.Children and their family caregivers were invited to provide valuable input which has been critical to the development of the intervention. The participant information sheet and consent form, as well as the consent/recruitment process, were reviewed by a consumer advisor advocate from the pilot study.CONSORT.Trial Registration: Chinese clinical trial registry: ChiCTR2200063973. Registered on 22 September 2022, https://www.chictr.org.cn/showproj.html?proj=132833 [ABSTRACT FROM AUTHOR]

Policy PointsWe examined the effect of the Paid Family Leave policy (PFL) and Paid Sick Leave policy (PSL) on care provision to older parents.We found that PSL adoption led to an increase in care provision, an effect mainly attributable to respondents in states/periods when PSL and PFL were concurrently offered. Some of the strongest effects were found among women and unpartnered adult children.PFL adoption by itself was not associated with care provision to parents except when PFL also offered job protection.Paid leave policies have heterogeneous effects on eldercare and their design and implementation should be carefully considered. Context: Family caregivers play a critical role in the American long‐term care system. However, care responsibilities are known to potentially conflict with paid work, as about half of family caregivers are employed. The federal Family and Medical Leave Act passed by the US Congress in 1993 provides a nonuniversal, unpaid work benefit. In response, several states and localities have adopted the Paid Family Leave policy (PFL) and Paid Sick Leave policy (PSL) over the last two decades. Our objective is to examine the effect of these policies on the probability of personal care provision to older parents. Methods: This study used longitudinal data from the Health and Retirement Study (1998‐2020). Difference‐in‐differences regression models were estimated to examine associations between state‐ and local‐level PFL and PSL mandates and personal care provision to older parents. We analyzed heterogeneous effects by the type of paid leave exposure (provision of job protection with PFL and availability of both PSL and PFL [with or without job protection] concurrently). We also examined results for different population subgroups. Findings: PSL implementation was associated with a four‐ to five‐percentage point increase in the probability of personal care provision. These effects were mainly attributable to respondents in states/periods when PSL and PFL were concurrently offered. The strongest effects were found among adult children who were employed at baseline, women, younger, unpartnered, and college educated. PFL implementation by itself was not associated with care provision to parents except when the policy also offered job protection. Conclusions: Paid leave policies have heterogeneous impacts on personal care provision, potentially owing to differences in program features, variation in caregiving needs, and respondent characteristics. Overall, the results indicate that offering paid sick leave and paid family leave, when combined with job protection, could support potential family caregivers. [ABSTRACT FROM AUTHOR]

• This study analyzes the relationship between Internet use and physical activity for family caregivers of older adults. • Internet use was negatively associated with MVPA while had no correlation with LPA. • The relationship between Internet use and MVPA was mediated by participation in economic activities, while participation in social activities acted as a suppressor. • The association between Internet use and MVPA was only reported in rural family caregivers. This study examined the influence of Internet use on light-intensity physical activity (LPA) and moderate-to-vigorous physical activity (MVPA) among family caregivers of older adults, utilizing data from the 2018 China Health and Retirement Longitudinal Study (N = 3,194). The Tobit model and Propensity Score Matching were first used to test the focal associations. Subsequently, mediation analyses and heterogeneity analysis were conducted to explore the pathways and urban-rural disparities. The results indicated that Internet use was negatively associated with MVPA and was not correlated with LPA. The Internet use – MVPA relationship was mediated by participation in economic activities, while participation in social activities acted as a suppressor. Further, the focal association was only found in rural family caregivers. The findings suggest that effective health promotion interventions are needed to mitigate the negative influence of Internet use on the MVPA of family caregivers of older adults, especially for those in the rural. [ABSTRACT FROM AUTHOR]

Background: Due to rapid increases in the number of Korean people with dementia, dementia has become a priority health issue in South Korea. Likewise, the well‐being of family caregivers of people with dementia has also become an issue of concern. However, little is known about the resilience of Korean family caregivers because there is a lack of review studies from a Korean cultural perspective about the resilience of family caregivers of people with dementia. Objectives: The purpose of this scoping review was to investigate quantitative studies related to resilience theories, measurement instruments, correlates and resilience interventions for family caregivers of people with dementia. Method: This review was conducted according to the Joanna Briggs Institute based on Arksey and O'Malley. Nine databases were searched to retrieve evidence published in English or Korean between January 2000 and September 2022. Studies with a quantitative research design reporting the resilience of family caregivers of people with dementia based on a resilience theory framework were included. Results: A total of 13 studies were included in this review. All studies used either a modified McCubbin and McCubbin's family stress, adjustment and adaptation model or Walsh's family resilience model. All resilience instruments were used without cross‐cultural adaptation. Family adaptation, social support, life satisfaction, family (di)stress and caregiver burden were associated with resilience among family caregivers. A few family resilience‐enhancing programmes showed a positive effect on caregiver resilience. Conclusion: This review noted that all the resilience measures documented in this study need to test for cultural adaptation in a Korean context. Further research is required to develop and implement family‐based, culturally tailored interventions to effectively enhance Korean resilience for family caregivers of people with dementia. Implications for Practice: Gerontological nurses should include Korean family caregivers in their nursing care and assess whether family caregivers have depression or suicidal thoughts to promote better health outcomes for caregivers and their family members. [ABSTRACT FROM AUTHOR]

Objective: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. Methods: We conducted a cross-sectional qualitative study among family caregivers of CMC receiving medical care at a children's hospital in Western Pennsylvania. Participants completed in-depth, semi-structured interviews focused on how CMC family caregivers approach and manage caregiving-related challenges and stress. Using constant comparative methodology, we inductively analyzed deidentified transcripts for emergent themes. Results: We interviewed 19 participants (89.4% female) with a mean age of 43 years (range 32–54 years). The mean age of the participants' children was 10.8 years (range 1–20 years). Twelve participants' children identified as white and four identified as Black. Three central themes regarding CMC caregivers' stress-coping strategies emerged: (1) maintaining a positive mindset, (2) developing and relying on interpersonal support networks, and (3) making time for self-preservation. All three themes were universally reported (n = 19/19) by our participants. The most common subthemes for each theme, respectively, focused on staying hopeful and celebrating moments of joy; cultivating supportive relationships with family, friends, and fellow CMC family caregivers; and finding pleasure in "little things" (e.g., everyday activities and hobbies). Conclusion: Family caregivers of CMC utilize a multi-faceted approach to cope with the stress and challenges routinely encountered in caring for CMC. This study's findings could be used to inform future clinical efforts and research directions aiming to improve clinicians' ability to support CMC caregivers' well-being. [ABSTRACT FROM AUTHOR]

Li Wei,1,2,&ast; Xingying Zhao,1,2,&ast; Xiaomei Chen,1 Yuxuan He,1 Jia Liu,1 Jishu Xian,2 Yanni Yang1 1School of Nursing, Army Medical University (Third Military Medical University), Chongqing, 434008, People’s Republic of China; 2Neurosurgery Department, the First Affiliated Hospital of Army Medical University (Third Military Medical University), Chongqing, 434008, People’s Republic of China&ast;These authors contributed equally to this workCorrespondence: Yanni Yang, School of Nursing, Army Medical University (Third Military Medical University), No. 30 Gaotanyan Street, Shapingba District, Chongqing, 434008, People’s Republic of China, Email yangyanni@tmmu.edu.cnBackground: Providing informal care for patients with neurocritical diseases is a challenging job, and family caregivers usually experience psychological distress and high caregiver burden. Previous studies have focused on caregiver burden for patients in the home rehabilitation stage, while few studies investigate caregiver burden among informal caregivers of early postoperative inpatients.Objective: This study aimed to investigate caregiver burden for caregivers of patients with neurocritical diseases during hospitalization and to identify predictive factors related to caregiver burden.Methods: From November 2023 to April 2024, a cross-sectional study was conducted using a convenience sampling method to assess patients with neurocritical disease and their family caregivers. The fundamental data regarding patients and caregivers were examined. Family caregivers were requested to complete the Zarit Burden Interview (ZBI), the Coping Adaptation Processing Scale (CAPS-15), the Chinese Auditory Verbal Learning Test of Huashan Version (AVLT-H), the Multifactorial Memory Questionnaire (MMQ), and the Hospital Anxiety and Depression Scale (HADS-A). The variables associated with caregiver burden were identified through the use of multiple linear regression analyses.Results: 300 patients and their family caregivers participated in the study. Predominantly male family caregivers accounted for 55.7%, and the mean age was 46.7 ± 13.1 years. The patients’ average age was 52.8 ± 14.3 years, 151 (50.3%) were men, and 153 (50.3%) had brain tumors. The average caregiver burden was 33.94 ± 17.2. Family caregivers of inpatients with neurocritical diseases experienced a mild to moderate caregiver burden. Patients’ physical function, caregiver’s age, relationship with patients, comorbid chronic disease status, memory function, adaptation level, and anxiety independently predicted caregiver burden, accounting for 66.3% of the total variation.Conclusion: Family caregivers of inpatients with neurocritical diseases experience mild to moderate level of caregiver burden. Tailored early support plans should be developed based on caregivers’ characteristics, including anxiety strategies, memory support, communication optimization, and role adjustment, to reduce their burden.Keywords: caregiver burden, family caregivers, influencing factors, neurocritical disease, hospitalization

Abstract Background Understanding the motivations driving family members to continue caring for individuals with Alzheimer’s disease is crucial for enhancing social support programs within community health systems. This study specifically explores the factors influencing Iranian family caregivers’ ability to persist in their caregiving roles. Methods This qualitative study was conducted using conventional content analysis with 22 participants in 2022 in Babol (a city in northern Iran). The inclusion criteria for the study included caregivers of Alzheimer’s patients who had been the primary caregivers for at least one year for patients with a confirmed diagnosis of Alzheimer’s disease. The sampling method was purposive, ensuring maximum variation in social position, demographic status, and stages of Alzheimer’s disease after the onset of symptoms. In this research, data were collected from caregivers of Alzheimer’s patients through semi-structured interviews and in-depth individual interviews. The data were analyzed using MAXQDA software. Results One category and four subcategories were identified to explain the continuity of the caring role in family caregivers of Alzheimer’s patients. The category was “on the Fence of the Caring Role.” The subcategories included Commitment to Care (Being Determined, Being Indebted, Feeling Dutiful), Coercion to Care (Giving in to the Caring Role Due to Family Requirements, Patient Care Due to Financial Problems), Socio-Cultural Beliefs and Concerns (Spiritual and Religious Tendencies, Social Stigma and Social Fears), and Attachment and Love for the Patient (Feeling Pity, Feeling Nostalgia for Kinship). Conclusion Family caregivers are deeply engaged in their roles, often feeling trapped by various pressures. Recognizing these dimensions can inform policymakers and health practitioners in developing targeted interventions, such as respite care programs, financial support, and community resources, aimed at alleviating caregiver burden and enhancing the quality of care for patients. By addressing the complexities of the caregiver experience, effective strategies can be implemented to support both patients and their caregivers, ultimately improving health outcomes within the community.

Abstract Objective The primary aim of this study is to elucidate the spiritual needs encountered by family members who intricately engage in the progression of illness within the palliative care framework, thus assuming the paramount responsibility of caregiving. Methods This study was approved by the Institutional Review Board and Ethics Committee of the University of Health Sciences İzmir Tepecik Training and Research Hospital (17/01/2022–2022/01–16). The research was designed as a prospective study. It was conducted through face-to-face, interactive interviews with family caregivers of patients admitted to the palliative care unit at Tepecik Training and Research Hospital between April 2022 and December 2022. The interviews were performed using a phenomenological approach and structured in a question-and-answer format. Data from twenty family caregivers were analyzed using thematic analysis. The questions were specifically designed to explore the psychological processes, spirituality, conceptions of God, meaning-making, and coping strategies of the family caregivers. Results Caregivers experienced various psychological and emotional states progressing through stages of denial, anger, and acceptance. Spirituality emerged as a critical coping mechanism providing strength and meaning amidst caregiving challenges. Caregivers’ perceptions of God varied from loving to punitive, influencing their interpretations of suffering and caregiving roles. Conclusion This study underscores the importance of integrating spiritual support into palliative care practices. Recognizing and addressing caregivers’ spiritual needs is crucial for enhancing their well-being and improving the quality of palliative care delivery. Training healthcare professionals in spiritual care and implementing targeted interventions can effectively support family caregivers in their caregiving journey.

Abstract Background Serious mental illness (SMI) is a debilitating medical condition that causes stress and challenges for the family caregivers (FCs) of affected patients, increasing their caregiver burden (CB). This situation can activate attachment styles (AS) and trigger negative emotions, further contributing to CB. Given that AS and cognitive-emotional regulation (CER) can affect the CB of FCs of patients with SMI, the aim of this study was to evaluate the relationship between CB with AS, and CER among the FCs. Methods This cross-sectional descriptive-correlational study was carried out in May–November 2022. Participants were 278 FCs of patients with SMI consecutively recruited from Roozbeh leading psychiatric hospital, Tehran, Iran. Data were collected using a patients’ demographic and clinical characteristics questionnaire, an FCs’ demographic characteristics questionnaire, the Attachment Style Questionnaire, the Cognitive Emotion Regulation Questionnaire, and the Burden Scale for Family Caregivers, and were analyzed using the SPSS software (v. 16.0). Results CB had significant inverse relationship with secure AS (r = − 0.262) and significant positive relationship with fearful AS (r = 0.194) and dismissive AS (r = 0.242) (P

OBJECTIVE: The present study aimed to identify the needs of the family caregiver of dependent elderly in a different cultural dimension, integrating the social, political and economic reality of each community. METHODOLOGY: This phenomenological study was carried out with two groups of caregivers of dependent family members from Portugal and Brazil, using focus group as a data collection instrument. RESULTS: From the analysis of the narratives of the 12 caregivers who participated in the study, a set of categories emerge: the need to learn alone, the need for time to maintain the roles, the need for a support network, resilience in imbalances family, and the resources to care for them. CONCLUSION: In this work it was possible to highlight similarities in the needs of the caregivers of the two countries.

Abstract Background Caregiver stress can pose serious health and psychological concerns, highlighting the importance of timely interventions for family caregivers of people with dementia. Single-session mindfulness-based interventions could be a promising yet under-researched approach to enhancing their mental well-being within their unpredictable, time-constrained contexts. This trial will evaluate the effectiveness and feasibility of a blended mindfulness-based intervention consisting of a single session and app-based follow-up in reducing caregiver stress. Methods/Design The study is a single-blinded randomized controlled trial with two arms (intervention versus an education session on dementia care) and assessments at baseline, 8 weeks, and 6 months. The eligibility criteria include: family caregivers aged 18 years or older; providing care for an individual with a confirmed medical diagnosis of dementia for at least 3 months prior to recruitment, with a minimum of 4 hours of daily contact; and exhibiting a high level of caregiver stress. The intervention comprises a 90-minute group-based session with various mindfulness practices and psychoeducation. Participants will receive a self-practice toolkit to guide their practice over a duration of 8 weeks. Sharing activities will be implemented through an online social media platform. The primary outcome is perceived caregiving stress. The secondary outcomes include depressive symptoms, positive aspects of caregiving, dyadic relationship, trait mindfulness, and neuropsychiatric symptoms of care recipients. The feasibility outcomes include eligibility and enrollment, attendance, adherence to self-practice, and retention, assessed using mixed methods. Discussion The study will contribute to the evidence base by investigating whether a single-session mindfulness intervention is effective and feasible for reducing caregiver stress among family caregivers of people with dementia. Trial registration ClinicalTrials.gov, NCT06346223. Registered on April 3, 2024.

Abstract Background ‘Learning to feel better… and help better’ is a psychoeducational intervention that aims to empower family caregivers of people with dementia by helping them cope better with the daily stress of dementia caregiving. The intervention has been adapted to a Swiss context and evaluated with a mixed-method design, yielding promising results in caregivers, such as a reduced subjective burden and improved self-efficacy. Qualitative findings have provided insight into potentially relevant intermediate changes that must be further explored to better understand how the intervention precipitates the achieved changes. We aim to qualitatively explore such changes, related mechanisms and key intervention components in the context of this intervention. Methods A constructivist grounded theory approach was used to achieve this aim. Changes, related mechanisms and key intervention components were identified by exploring the following: 1) longitudinal qualitative data, collected from 13 family caregivers via interviews performed before, during and after the intervention (39 interviews total) and 2) cross-sectional post-intervention interview data collected from 22 family caregivers (22 interviews). Results Experiencing calmness was the most important change for caregivers in the context of this intervention. The calmness model, developed based on the qualitative analysis, illustrates the intermediate changes that contributed to calmness, such as being able to cope with daily life and experiencing positive interactions with the family member with dementia. Related key intervention components were the coping strategy ‘reframing’, employed in diverse ways by the caregivers to reduce daily stress, and the didactic method ‘active skills’ training’, which involved active participation by the caregivers and the guidance of a professional group leader. One important factor hampering changes in caregivers was having difficulties accepting the caregiver role or accepting the losses due to dementia. Conclusion The calmness model offers valuable insight into how this intervention can benefit family caregivers and aid in developing interventions targeting similar mechanisms and changes. Trial registration ISRCTN13512408 (registration date 17.05.2021, retrospectively registered).