'Safety is about partnership': Safety through the lens of patients and caregivers.

INTRODUCTION: Creating safer care is a high priority across healthcare systems. Despite this, most systems tend to focus on mitigating past harm, not creating proactive solutions. Managers and staff identify safety threats often with little input from patients and their caregivers during their health encounters. METHODS: This is a qualitative descriptive study utilizing focus groups and one-to-one interviews with patients and caregivers who were currently using (or had previously used) services in health systems across Canada. Data were analysed via inductive thematic analysis to understand existing and desired strategies to promote safer and better quality care from the perspectives of patients and caregivers. FINDINGS: In our analysis, we identified three key themes (safety strategies) from patients' and caregivers' perspectives and experiences: Using Tools and Approaches for Engaging Patients and Caregivers in their Care; Having Accountability Processes and Mechanisms for Safe Care; and Enabling Patients and Caregivers Access to Information. CONCLUSIONS: Safety is more than the absence of harm. Our findings outline a number of suggestions from patients and caregivers on how to make care safer, ranging from being valued on teams, participating as members of quality improvement tables, having access to health information, having access to an advocate to help make sense of information and having processes in place for disclosure and closure. Future work can further refine, implement and evaluate these strategies in practice. PATIENT OR PUBLIC CONTRIBUTIONS: An advisory group guided the research and was co-chaired by a patient partner. Members of the advisory group spanned patient and caregiver organizations and health sectors across Canada and included three patient partners and leaders who work closely with patients and caregivers in their day-to-day work. In the research itself, we engaged 28 patients and caregivers from across Canada to learn about their safety experiences and learn what safer care looks like from their perspectives.

Rural unpaid caregivers' experiences in northern Aotearoa, New Zealand during the Covid-19 pandemic: A qualitative study.

OBJECTIVE: Rural unpaid caregivers experience different opportunities and challenges than their urban counterparts. Our aim was to understand rural unpaid caregivers' experiences of challenges and opportunities during the Covid-19 pandemic in New Zealand. SETTING: Rural northern New Zealand during the Covid-19 pandemic. PARTICIPANTS: A convenience sample of 10 unpaid rural caregivers, most supporting an older person living with dementia. DESIGN: A qualitative descriptive design. Data included interviews and online workshops, and a thematic analysis. RESULTS: Rural unpaid caregivers observed that some aspects of living in a rural context were helpful during the Covid-19 pandemic. However, tasks such as shopping and long-distance travel and communication (both telephonic and digital) became more complex. Abrupt changes to routine and closure of resources and support groups created challenges. Unpaid caregivers worried about what would happen if they were hospitalised themselves. There was a diversity of experience both across caregivers, of familiar routines and rural context as resources, increased challenges requiring resourcefulness to adapt, and experiences of crisis. Many experienced all three states at different times. CONCLUSION: This research provides valuable insights into challenges and opportunities experienced by rural unpaid caregivers during the Covid-19 pandemic and may help policy-makers and healthcare professionals develop improved emergency preparedness. Multilevel, multisector responses are needed to ensure effective health and social support and access to resources including health care, access to groceries and medication, transport, and communications (telephone and digital). Enhancing rural access to effective and inexpensive online services is particularly important, as is recognition of the value of rural sites or hubs of connection and social interaction.

Use of Virtual Reality and Augmented Reality Technologies to Support Resilience and Skill-Building in Caregivers of Persons With Dementia: A Scoping Review.

Dementia presents a growing public health challenge with most affected individuals living at home, placing significant responsibility on their caregivers. Various interventions, from traditional support groups and education programs to emerging technologies, and more specifically virtual reality (VR) and augmented reality (AR), aim to enhance caregiver skills. While VR/AR shows promise in educating and fostering empathy among caregivers and healthcare professionals, its overall effectiveness and practicality in older adults and dementia care warrant further exploration. This review aimed to summarize currently available VR and AR interventions tailored for family caregivers of persons living with dementia (PLWD) in home or clinical settings, including their level of effectiveness, and to compile a summary of features that contributed to technology acceptance in family caregivers of PLWD. We conducted a systematic search in OVID PsychInfo, CINAHL, Google Scholar, and ERIC, as well as CADTH's Grey Matters, OpenGrey, National Technical Information Service, OAIster, and Health Quality Ontario, to comprehensively summarize the existing evidence underscoring the role of VR and AR in supporting education, resilience-building, and skills training for family caregivers of PLWD. The search terms were built with the assistance of a research librarian and involved synonyms for VR, AR, and dementia. Two screeners conducted a rigorous screening and data extraction to analyze and summarize findings. Studies were included if they focused on family caregivers engaging in interventions utilizing a three-dimensional VR environment and/or Metaverse for group learning in psychotherapeutic modalities such as psychoeducation, therapy, communication, and skill-building. The primary outcome of the studies was assessing measures of well-being (e.g., quality of life, communication, interaction, personhood) and learning outcomes for caregivers, while the secondary outcomes focused on identifying barriers and facilitators influencing the acceptability of VR/AR among dementia caregivers. Content analysis and descriptive statistics were used to summarize key trends in technology and evidence effectiveness and acceptability. Of the 1,641 articles found, 112 were included, with six articles meeting inclusion for analysis. Studies differed in duration and frequency of data collection, with interventions varying from single events to months-long programs, often employing home-based approaches using VR or online platforms. No study used AR. Usability issues and unclear benefits of use were identified as factors that hinder technology acceptance for dementia caregivers. However, technologies demonstrated engaging user experiences, fostering skill-building, confidence, and competence among caregivers. Positive psychological effects were also observed, facilitated by immersive VR and AR interventions, resulting in improved caregiver empathy and reduced stress, depression, and loneliness. VR and AR interventions for family caregivers of PLWD show the potential to enhance empathy and skills and reduce stress. Challenges such as technological limitations and user inexperience issues persist. Home-based VR training aligns with caregiver comfort but lacks focus on financial aspects and cultural competencies. Co-design approaches offer solutions by addressing user concerns and promoting end-user engagement or empowerment.

A qualitative study on the life experiences and discharge planning of family caregivers for the elderly with nasal feeding.

OBJECTIVE: To understand the discharge planning needs of family caregivers for the elderly with nasal feeding. METHODS: From May to August in 2021, in-depth interviews were conducted with eleven family caregivers for elderly patients with nasal feeding at a tertiary hospital in Shenzhen. The interviews were analyzed using phenomenological research methods and the Knowledge, Awareness, and Practice (KAP) theory to identify and refine key themes. RESULTS: The discharge planning needs of family caregivers for elderly with nasal feeding can be summarized into three themes: ① Learning needs related to nasal feeding knowledge and discharge planning (Knowledge), ② Factors affecting the family caregivers of elderly with nasal feeding (Awareness), and ③ Practical needs in caregiving (Practice). CONCLUSION: Discharge planning for family caregivers of elderly individuals receiving nasal feeding should focus on the accurate assessment of tube placement and patient condition, operational skills, emergency response, and complication management. Medical professionals should evaluate these needs to develop personalized discharge readiness service plans, ensuring the quality of care for elderly patients with nasal feeding at home.

Implementation outcomes from a multi-site stepped wedge cluster randomized family caregiver skills training trial.

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

Compassion, stress and coping strategies in family caregivers of patients with heart failure.

The requirements of caring for individuals with diseases with excess care burden like heart failure (HF) comprise a source of stress for the caregiver. This situation affects the health of caregivers and may cause a reduction in their level of compassion. However, compassion is associated with psychological benefits and coping strategies like positive mood in caregivers. The aim of this study was to investigate the correlations between compassion, coping strategies and stress levels of family members caring for individuals with HF. We found that the dysfunctional coping strategies were determined to play a partial mediating role in the relationship between caregiver compassion levels and stress levels. Caregivers with higher compassion levels reported lower stress levels. This situation may be linked to their use of relatively fewer dysfunctional coping strategies. Findings help to examine the correlations between compassion, coping strategies and stress levels of family members caring for individuals with HF.

Capturing the complexity of child behavior and caregiver-child interactions in the HEALthy Brain and Child Development (HBCD) Study using a rigorous and equitable approach.

The HEALthy Brain and Child Development (HBCD) Study, a multi-site prospective longitudinal cohort study, will examine human brain, cognitive, behavioral, social, and emotional development beginning prenatally and planned through early childhood. This article outlines methodological considerations and the decision-making process for measurement selection for child behavior, parenting/caregiver-child interactions, and the family/home environment for HBCD. The decision-making process is detailed, including formation of a national workgroup (WG-BEH) that focused on developmentally appropriate measures that take a rigorous and equitable approach and aligned with HBCD objectives. Multi-level-observational and caregiver-report measures were deemed necessary for capturing the desired constructs across multiple contexts while balancing the nuance of observational data with pragmatic considerations. WG-BEH prioritized developmentally sensitive, validated assessments with psychometrics supporting use in diverse populations and focused on mechanistic linkages and prediction of desired constructs. Other considerations included participant burden and retention, staff training needs, and cultural sensitivity. Innovation was permitted when it was grounded in evidence and filled key gaps. Finally, this article describes the rationale for the selected constructs (e.g., temperament, social-emotional development, parenting behaviors, family organization) and corresponding measures chosen for HBCD visits from early infancy through 17 months of age.

A human centred innovative approach based on persona in hereditary angioedema.

BACKGROUND: Hereditary Angioedema (HAE) due to C1-inhibitor deficiency (C1INH) is a rare condition, clinically characterised by recurrent swelling. The unpredictability of attacks affects the patients' quality of life (QoL). HAE patients and their families have vast unmet physical, psychological, and social needs. A human-centred design (HCD) approach to describing the needs of different user types is to utilise personas, a data-driven narrative tool for communicating user archetypes that capture the individuals' attitudes, goals, and behaviours. The aim of this study was to create and analyse personas based on HAE patients' and their caregivers' interviews. Semi-structured interviews were conducted through anthropological conversations with patients, patient-caregivers (double role of patient and caregiver), and non-affected caregivers. Qualitative and quantitative insights from analyses formed the basis to create personas. RESULTS: We enrolled 17 subjects: 15 patients (6 of them were patient-caregivers) and 2 non-affected caregivers. The mean age of participants was 50.3 ± 14.4 years. Eight patients were on treatment with prophylactic therapy. The mean percentage score of Angioedema Quality of Life (AE-QoL) for HAE patients was 19.8 ± 12.0. Six personas were identified describing the participants' personal history, disease management, and needs: four personas referred to patients, one to patient-caregivers, and one non-affected caregiver personas were identified. Across patient personas, the most expressed needs were psychological support and better awareness amongst healthcare professionals. Caregivers, on their side, desired better information about the disease, including the latest therapies, and higher awareness within the community. CONCLUSION: A Human Centred Innovative Approach Based on Persona extends beyond the physical symptoms to encompass the psychological and social aspects of the individual's well-being also including the family in the evaluation.

The Predictive Power of Religious Coping on Care Burden, Depression, Stress, and Anxiety of Parents of Pediatric Oncology Patients in Turkey.

This study aimed to determine the predictive power of religious coping of parents of children with cancer on caregiver burden, depression, anxiety, and stress in Turkey. It was designed as a descriptive and cross-sectional study, utilizing correlational analysis and regression models to explore associations between variables. Data were collected from 164 parents in the pediatric hematology-oncology clinics of a university hospital between November 2023 and March 2024. There was a negative correlation between caregiver burden score and negative and positive religious coping scores. Caregiver burden scores were positively correlated with depression, anxiety, and stress scores. Results indicated that caregiver burden, education level, employment status, family structure, family income, and age at diagnosis significantly predicted positive religious coping. For negative religious coping, caregiver burden, education level, family structure, and family income were significant predictors. This suggests that religious coping may help reduce caregiver burden, underscoring the importance of promoting constructive coping strategies to support caregivers' well-being.

The foremost and greatest barrier to end-stage heart failure treatment: the impact of caregiver shortage.

We examined the number of patients abandoning cardiac replacement therapy due to the inability to secure a designated caregiver. At Osaka University Hospital Heart Center, when we receive a consultation for a patient with severe heart failure from another hospital, a heart failure team makes a visit to the referring hospital as soon as possible. We retrospectively analyzed this hospital-visit database. We received 199 severe heart failure consultations from 2016-2023. Issues identified during hospital visits included age ≥ 65 years (8%), inability to confirm the patient's intention (8.5%), and explicit refusal of therapy (2.5%). Medical problems included multiple organ failure (18.1%), obesity (13.1%), diabetes (9.5%), malignancy (5.5%), chronic dialysis (1.0%), and other systemic diseases (12.6%). Adherence problems included poor medication compliance (3.5%), history of heavy drinking (2.5%), and smoking (2.0%). Social problems included inadequate family support in 16.1% of patients. Of the 199 patients, 95 (48.0%) proceeded to a heart transplant and LVAD indication review meeting at Osaka University Hospital. The remaining 104 patients (52.0%) did not proceed to the meeting. Reasons included improvement of heart failure with conservative treatment in 37 cases (35.6%), death before discussion in 21 cases (20.2%), medical contraindications in 18 cases (18.3%), lack of caregivers in 18 cases (18.3%; 9.5% of 199 cases), and patient refusal in 5 cases (4.8%). Approximately 10% of patients consulted at Osaka University Hospital Heart Center for severe heart failure abandoned cardiac replacement therapy due to the lack of caregivers.

Family resilience experiences of individuals with schizophrenia-family caregivers dyads: Qualitative study.

WHAT IS KNOWN ON THE SUBJECT?: Family resilience is an important determinant of family caregivers' coping with difficulties of life and stress effectively. Family resilience factors contribute to the family's adaptation to difficulties. From the perspective of the individual living with schizophrenia and family, family resilience focuses not on the losses experienced but on the strengths. WHAT DOES THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Many factors such as routines, positive cognitions, intra-family communication, family support and love as a healing force that contribute to family resilience were identified from the common perspective of the individual diagnosed with schizophrenia-family caregiver dyads. The climate of love within the family is an important strength both for the patient diagnosed with schizophrenia and for the family caregivers. Mutual support between family members, their listening to each other and sharing experiences with each other during this disease process are therapeutic for both parties and make them resilient. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Family resilience factors should be considered in planning psychosocial interventions to be applied to individuals diagnosed with schizophrenia and family caregivers. The clinical use of psychosocial support interventions in family resilience which help both the individual diagnosed with schizophrenia and the family caregivers to gain a positive perspective, to improve their problem-solving skills, and to support each other within the family should be expanded. Displaying approaches aimed at increasing the climate of love and strengthening correct communication techniques within the family towards both the individual diagnosed with schizophrenia and the family caregiver should be supported. Psychiatric nurses' focusing on family resilience from a systemic perspective in chronic mental illnesses such as schizophrenia strengthens the patient and the family. This perspective focuses on functional dimensions and protects mental health despite existing problems. ABSTRACT: INTRODUCTION: Family resilience is one of the important concepts that should be addressed in chronic mental illnesses. AIM: This study was aimed at investigating family resilience experiences from the perspective of individuals diagnosed with schizophrenia-family caregiver dyads. METHOD: The study was conducted in the Adult Psychiatry inpatient and outpatient unit of a university hospital in a province in western Turkey using the phenomenological method. By using the purposeful sampling method, 20 participants were selected in the study. Of them, 10 were family caregivers and 10 were patients diagnosed with schizophrenia. The results of the study were analysed with a dyadic approach within the framework of key processes of Walsh family resilience model. The directed content analysis method was used to analyse the data obtained from the study. COREQ checklist was used to report the research. RESULTS: After the analysis, the following five main themes emerged: positive cognitions, routines, family support, intra-family communication and love as a healing force. DISCUSSION: Family resilience is a structure shaped by the relationship between family members. The factors that contribute to the individual diagnosed with schizophrenia-caregiver dyads' ability to overcome difficulties in family resilience are discussed in line with the relevant literature. IMPLICATIONS FOR PRACTICE: Intervention programs should be implemented to create an environment of love by improving relationships and communication in the family, improving problem solving and increasing support resources.

Demographic characteristics, diagnostic challenges, treatment patterns, and caregiver burden of mitochondrial diseases: a retrospective cross-sectional study.

BACKGROUND: This study aimed to explore the demographic characteristics, diagnostic challenges, treatment patterns, and caregiver burden of mitochondrial diseases. METHODS: This retrospective cross-sectional study enrolled patients diagnosed with mitochondrial diseases from the Department of Neurology at Peking University First Hospital between January 2010 and December 2021. A questionnaire covering demographic characteristics, diagnostic dilemma, treatment, economic aspects, and caregiver stress was administered, and disability was assessed using the modified Rankin Scale (mRS). RESULTS: A total of 183 patients (mean age: 16 (IQR: 12-25), 49.72% males) were enrolled, including 124 pediatric patients and 59 adult patients. MELAS (106. 57.92%) and Leigh syndrome (37, 20.22%) were predominant among the mitochondrial disease subtypes. Among them, 132 (72.13%) patients were initially misdiagnosed with other diseases, 58 (31.69%) patients visited 2 hospitals before confirmed as mitochondrial disease, and 39 (21.31%) patients visited 3 hospitals before confirmed as mitochondrial disease. Metabolic modifiers were the most common type of drugs used, including several dietary supplements such as L-carnitine (117, 63.93%), Coenzyme Q10 (102, 55.74%), idebenone (82, 44.81%), and vitamins (99, 54.10%) for proper mitochondrial function. Mothers are the primary caregivers for both children (36.29%) and adults (38.98%). The mRS score ranged from 0 to 5, 92.35% of the patients had different degrees of disability due to mitochondrial disease. The average monthly treatment cost was 3000 RMB for children and 3100 RMB for adults. CONCLUSIONS: This study provided valuable insights into the characteristics and challenges of mitochondrial diseases, which underscores the need for improved awareness, diagnostic efficiency, and comprehensive support for patients and caregivers.

The CAREPAL-8: a short screening tool for multidimensional family caregiver burden in palliative care.

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

Effects of personalized music listening on post-stroke cognitive impairment: A randomized controlled trial.

BACKGROUND AND PURPOSE: Previous studies have suggested that music listening has the potential to positively affect cognitive functions and mood in individuals with post-stroke cognitive impairment (PSCI), with a preference for self-selected music likely to yield better outcomes. However, there is insufficient clinical evidence to suggest the use of music listening in routine rehabilitation care to treat PSCI. This randomized control trial (RCT) aims to investigate the effects of personalized music listening on mood improvement, activities of daily living (ADLs), and cognitive functions in individuals with PSCI. MATERIALS AND METHODS: A total of 34 patients with PSCI were randomly assigned to either the music group or the control group. Patients in the music group underwent a three-month personalized music-listening intervention. The intervention involved listening to a personalized playlist tailored to each individual's cultural, ethnic, and social background, life experiences, and personal music preferences. In contrast, the control group patients listened to white noise as a placebo. Cognitive function, neurological function, mood, and ADLs were assessed. RESULTS: After three months of treatment, the music group showed significantly higher Montreal Cognitive Assessment (MoCA) scores compared to the control group (p=0.027), particularly in the domains of delayed recall (p=0.019) and orientation (p=0.023). Moreover, the music group demonstrated significantly better scores in National Institutes of Health Stroke Scale (NIHSS) (p=0.008), Barthel Index (BI) (p=0.019), and Zarit Caregiver Burden Interview (ZBI) (p=0.008) compared to the control group. No effects were found on mood as measured by the Hamilton Anxiety Rating Scale (HAMA) and the Hamilton Depression Rating Scale (HAMD). CONCLUSION: Personalized music listening promotes the recovery of cognitive and neurological functions, improves ADLs, and reduces caregiver burden in patients with PSCI.

Gerontology in Public Health: A Scoping Review of Current Perspectives and Interventions.

The intersection of gerontology and public health is increasingly vital due to the global aging population and its implications for health systems. This scoping review aims to map existing literature on gerontology within public health, identify current perspectives, and evaluate interventions tailored to the needs of older adults. A systematic search was performed using predefined keywords across multiple databases, including PubMed, Google Scholar, Scopus, and Web of Science. The review included 42 studies that employed various designs, all focusing on public health interventions targeting the aging population.  Key findings indicate a pressing need to integrate gerontological principles into public health practice, recognizing the heterogeneous nature of older adults and the significance of social determinants of health. Interventions ranged from preventive health measures and chronic disease management programs to health promotion activities and caregiver support, including the application of technology to improve health outcomes. However, there was a notable lack of research on diverse populations and mental health interventions. The review also uncovered critical gaps in the literature, such as economic barriers to care access and the necessity for comprehensive policies addressing the aging population's diverse needs. In conclusion, this review emphasizes the importance of a multidimensional approach to effectively addressing older adults' health needs. While several effective interventions exist, there is an urgent need to tackle identified gaps, particularly concerning diverse populations and mental health, to enhance overall health strategies for the aging demographic.

Are Art-Based Interventions Effective in Improving Psychological Well-Being Among Informal Caregivers of Cancer Patients? A Systematic Review.

Objectives: To systematically synthesize the current evidence on the effects of art-based interventions on improving anxiety, depression, stress, sleep, and well-being of cancer caregivers. Design: A systematic review. Methods: We searched PubMed, EMBASE, Web of Science, CINAHL, PsycINFO, and Cochrane Central Register of Controlled Trials databases from their inception up to April 2024. Studies exploring the effects of art-based interventions on the psychological symptoms of cancer caregivers were included. We did not restrict the publication to the particular study designs, including randomized controlled trials, quasiexperimental studies, and qualitative studies. Results: Fifteen studies of 607 participants were identified in this systematic review. Overall, the existing studies provided preliminary evidence to suggest that art-based interventions may benefit cancer caregivers in improving anxiety, depression, stress, caregiver burden, and quality of life. However, the relatively low quality of the current evidence limits the efficacy of these findings. Conclusions: According to the existing evidence, the therapeutic benefits of using art-based interventions for improving the psychological well-being of cancer caregivers are uncertain. More high-quality and well-designed studies are still required to confirm the psychological effectiveness of art-based interventions for cancer caregivers in the future.

Caregivers of individuals with borderline personality disorder: The relationship between leading caregiver interventions and psychological distress/positive mental well-being.

Burden and psychological distress are higher in informal caregivers (ICs) of people with severe emotional and behavior dysregulation who have been given a diagnosis of borderline personality disorder (BPD) compared with non-caregivers. The current cross-sectional study examines the difference in outcomes of ICs of people with BPD who have received the intervention Family Connections (FC) and who also led interventions for other caregivers (caregiver-leaders) compared with those who have attended FC but not led caregiver interventions (non-leader-FC participants). The sample for this research is from a larger study (Hayes et al., 2023, Borderline Personality Disorder and Emotion Dysregulation, 10, 31). Data for 347 participants who self-reported receiving FC and completed the McLean Screening Instrument for BPD-Carer Version, the Brief COPE, the Multidimensional Scale of Perceived Social Support, the Kessler Psychological Distress scale, the WHO-5 Well-being Index, and the Coronavirus Anxiety Scale were analyzed. The results found that being a caregiver-leader was associated with higher positive mental well-being and lower psychological distress compared with non-leader-FC participants. Being a caregiver-leader was also associated with significantly greater use of the coping strategy of positive reframing and lower use of behavioral disengagement and self-blame than non-leader-FC participants. The study provides preliminary evidence that for those who have received FC, becoming an intervention leader is associated with better outcomes than caregivers who do not become leaders and provides support for caregiver-led rollout of FC across services.

Understanding the Behavioral Health Needs of Hospice Patients and Their Family Caregivers: Perspectives of Hospice Medical Directors.

BACKGROUND: Behavioral health disorders are common among patients and caregivers in the hospice setting. Yet, limited data exist regarding what hospice providers perceive as the most common and challenging behavioral health disorders they encounter and how they manage these issues in practice. OBJECTIVE: To characterize the perspectives of hospice medical directors (HMDs) on addressing the behavioral health challenges when caring for patients enrolled in home hospice care and their family caregivers. METHODS: Semistructured interviews with seventeen certified HMDs were conducted. Data were analyzed using thematic analysis. RESULTS: Many HMDs agreed that delivering high-quality behavioral health care is a tenet for good end-of-life (EoL) care. HMDs shared that depression and anxiety were the most common behavioral health challenges they encountered, while among caregivers, substance use disorder was the most challenging. Participants mentioned that nurses and social workers played a vital role in detecting and managing behavioral health problems. HMDs also stated that providing additional training for frontline staff and incorporating behavioral health experts are potential solutions to help address current challenges. CONCLUSION: HMDs emphasized the importance of addressing behavioral health challenges among patients and caregivers to provide effective end-of-life care. Future studies should examine the viewpoints of additional key stakeholder groups (e.g., hospice interdisciplinary team members, family caregivers) and confirm them in quantitative studies. Designing and implementing evidence-based assessments and interventions to improve behavioral health care by addressing anxiety, depression, and caregiver substance use disorders is essential to improving care and care outcomes in the hospice setting.

Factors Associated with Patient-Caregiver Concordance about Life-Sustaining Treatment Preferences among Advanced Cancer Patients: A Cross-Sectional Study.

OBJECTIVES: Concordance of preferences for end-of-life care regarding patients between patients with advanced cancer and family caregivers can improve the likelihood of honoring dying patients' wishes. However, there is a dearth of knowledge in mainland China. The purpose of this study was to examine patient-family caregiver concordance about patients' life-sustaining treatment preferences and associated factors among patients with advanced cancer in China. METHODS: From September 2019 to December 2021, a convenience sample of 406 dyads of advanced cancer patient-family caregiver were recruited from 2 tertiary hospitals in Wuhan, China. Participants completed a questionnaire about patient's preferences for life-sustaining treatment, respectively. The concordance was assessed by percent agreement and kappa coefficients. Associated factors were identified by univariate analysis and binary logistic regression. RESULTS: The average concordance rate on the preferences for life-sustaining treatment was 56.1%, ranging from 52.9% to 59.3%. Factors associated with a higher level of patient-family caregiver concordance were following: patients who were married, whose educational levels were at college or above, who had not been informed of diagnosis by a physician, who had been informed of the effects and side effects of related drugs by a physician, and who cared for a seriously ill family member or friend and caregivers whose educational level were primary or below. CONCLUSIONS: The patient-family caregiver concordance about patients' life-sustaining treatment preferences among patients with advanced cancer was poor. Patients' and caregivers' understanding of life-sustaining treatment and its efficacy in end-of-life should be facilitated. Relevant conversation should be encouraged between patients and caregivers, thus providing value-concordant end-of-life care for patients with cancer. IMPLICATIONS FOR NURSING PRACTICE: Health professionals need to carry out advanced care planning in oncology departments on mainland China to encourage patients and caregivers to discuss patients' end-of-life care preferences. Facilitating patients' and caregivers' understanding of life-sustaining treatment preferences may help improve the patient-caregiver concordance on life-sustaining treatment preferences among patients with advanced cancer.

The meaning of apathy in Huntington's disease: A qualitative study of caregiver perspectives.

Although one of the most prevalent and impactful features of Huntington's disease (HD), little is known about the impact of apathy on HD caregivers, although there is evidence it affects perceptions of distress and burden. Given the importance of the caregivers, we aimed to explore the lived experience of people supporting someone with HD and associated apathy. Semi-structured interviews were conducted with 11 caregivers and analysed using reflective thematic analysis, informed by a phenomenological framework. Five overarching themes were produced: (1) What even is apathy? (2) It makes my life harder: the practical impact of apathy, (3) They haven't forgotten me, but they have forgotten that they ever loved me, (4) I'm grieving for someone who hasn't died yet, and (5) I need a safe space to say what I really feel without fear of judgement. Inter-woven between these themes were complex narratives about the unspoken nature of HD, the invisibility of caregivers who felt trapped and unheard, and the one-sided nature of loving someone with the disease. Findings are discussed in relation to theoretical frameworks of anticipatory grief and ambiguous loss, and situated within the wider literature on caregiving for people with a neurodegenerative condition.