Validating interRAI Chinese self-reported carer needs (SCaN) assessment and predicting caregiving distress among informal Chinese caregivers of older adults.

BACKGROUND: This study aims to (1) determine the reliability and validity of the interRAI Chinese Self-reported Carer Needs (SCaN) assessment among informal Chinese caregivers of older adults, (2) identify predictors of caregiving distress in Asian regions with long-standing Confucian values of filial piety and family responsibility. METHODS: This cross-sectional study recruited 531 informal Chinese caregivers of older adults in Hong Kong, Shanghai, Taiwan, and Singapore. The scale reliability was examined using Cronbach's alphas (α) and McDonald's omega coefficient (ω). The concurrent validity and discriminant validity were assessed using Spearman rank correlations (rho). To examine the predictors of caregiving distress among informal caregivers of older adults, we employed hierarchical linear regression analyses informed by the Model of Carer Stress and Burden and categorized the predictors into six domains. RESULTS: Results revealed good internal consistency reliability (α = 0.83-0.96) and concurrent validity (rho = 0.45-0.74) of the interRAI Chinese SCaN assessment. Hierarchical linear regression analysis revealed that entering the background factors, primary stressors, secondary stressors, appraisal, and exacerbating factors all significantly enhanced the model's predictability, indicating that the source of caregiving distress is multidimensional. In the full model, caregivers with longer informal care time, lack of support from family and friends, have unmet needs, experience role overload, have sleep problems, and low IADL functioning are at a higher risk of caregiving distress. CONCLUSIONS: The interRAI Chinese SCaN Assessment was found to be a reliable and valid tool among the Chinese informal caregivers of older adults. It would be useful for determining family caregivers' strengths, needs, and challenges, and tailoring interventions that address the potentially modifiable factors associated with caregiving distress and maximize support. Healthcare providers working in home and community settings should be aware of the early identification of caregiving distress and routine assessment of their needs and empower them to continue taking care of their needs and providing adequate care to the care recipient.

Perceptions and outcomes of an embedded Alzheimer Society First Link Coordinator in rural primary health care memory clinics.

BACKGROUND: Primary health care has a central role in dementia detection, diagnosis, and management, especially in low-resource rural areas. Care navigation is a strategy to improve integration and access to care, but little is known about how navigators can collaborate with rural primary care teams to support dementia care. In Saskatchewan, Canada, the RaDAR (Rural Dementia Action Research) team partnered with rural primary health care teams to implement interprofessional memory clinics that included an Alzheimer Society First Link Coordinator (FLC) in a navigator role. Study objectives were to examine FLC and clinic team member perspectives of the impact of FLC involvement, and analysis of Alzheimer Society data comparing outcomes associated with three types of navigator-client contacts. METHODS: This study used a mixed-method design. Individual semi-structured interviews were conducted with FLC (n = 3) and clinic team members (n = 6) involved in five clinics. Data were analyzed using thematic inductive analysis. A longitudinal retrospective analysis was conducted with previously collected Alzheimer Society First Link database records. Memory clinic clients were compared to self- and direct-referred clients in the geographic area of the clinics on time to first contact, duration, and number of contacts. RESULTS: Three key themes were identified in both FLC and team interviews: perceived benefits to patients and families of FLC involvement, benefits to memory clinic team members, and impact of rural location. Whereas other team members assessed the patient, only FLC focused on caregivers, providing emotional and psychological support, connection to services, and symptom management. Face-to-face contact helped FLC establish a relationship with caregivers that facilitated future contacts. Team members were relieved knowing caregiver needs were addressed and learned about dementia subtypes and available services they could recommend to non-clinic clients with dementia. Although challenges of rural location included fewer available services and travel challenges in winter, the FLC role was even more important because it may be the only support available. CONCLUSIONS: FLC and team members identified perceived benefits of an embedded FLC for patients, caregivers, and themselves, many of which were linked to the FLC being in person.

"When You Look at This Chart, That Is Not My Whole Life": Caregiver Perspectives to Inform Improved Primary Care Practice and Outcomes.

OBJECTIVE: Worsening rates of infant and maternal mortality in the United States serve as an urgent call for multi-modal intervention. Infant Well Child Visits (WCVs) provide an opportunity for prevention, however not all infants receive the recommended schedule of visits, with infants of low-income and Black families missing a higher portion of WCVs. Due to diverse experiences and needs of under-resourced communities throughout the United States, caregiver voice is essential when designing improvement efforts. METHODS: Purposeful sampling and interviewing of 10 caregivers in Cincinnati, OH was performed by community peer researchers. Interview transcripts were evaluated by the research team, with identification of several important themes. RESULTS: Nine out of 10 caregivers self-identified as Black. All young children of the interviewed caregivers had Medicaid as their insurance provider. All interviews highlighted rich perspectives on caregiver hopes for their child, family, and selves. Establishing trust through empathy, shared decision making, and the nurturing of interpersonal patient-practitioner relationships is crucial for fostering a positive healthcare experience. Levels of mistrust was perceptibly high across several interviews, with lack of racial concordance between medical provider and family exacerbating the issue for some caregivers. Caregivers voiced a tendency to rely on family and community members for when to seek out health care for their children, and additionally cited racism and perceptions of being rushed or judged as barriers to seeking further care. CONCLUSION: This study emphasizes the importance of being community-informed when considering interventions. Prior research on the topic of missed WCV's often focused on material resource availability and limitations. While that was commented on by caregivers in this study as well, equal-if not more-attention was directed toward interpersonal relationship formation, the presence or absence of trust between practitioner and caregiver, and the importance of social-emotional support for caregivers. We highlight several opportunities for systemic improvements as well as future directions for research.

The relationship between the caregiver burden and quality of life in parents of Turkish children with anorectal malformation or Hirschsprung's disease.

BACKGROUND: Anorectal malformation (ARM) or Hirschsprung's disease (HD) in children impact on parents' burden of care and quality of life (QoL). The aim of this study was to investigate the relationship between caregiver burden and QoL in parents of children with ARM or HD. DESIGN AND METHODS: This cross-sectional study was conducted with 51 parents who completed the Zarit Burden Inventory (ZBI) and World Health Organization Quality of Life Scale-Short Form Turkish Version (WHOQOL-BREF-TR). RESULTS: The mean (±SD) ZBI score was 33.6 (±12.7), and 47.1% of parents (n = 24) perceived their caregiver burden as mild, 31.4% (n = 16) as moderate, and 3.9% (n = 2) as severe. According to the multivariate linear regression, associated anomalies (ß1 = 5.912), family income (ß1 = -6.007), stoma care (ß1 = 8.287), and diagnosis were identified to be significant determinants of caregiver burden. A negative, moderate, and significant relationship was identified between the ZBI scores and the physical domain (r = -0.417, p < .01), psychological domain (r = -0.421, p < .01), social relations domain (r = -0.398, p < .01), and environmental domain (r = -0.495, p < .01) scores of the WHOQOL-BREF-TR. CONCLUSIONS: The mothers perceived their caregiver burden as mild. However, a significant number of parents suffer from moderate to heavy caregiver burden. An increase in the caregiver burden of parents reduces their quality of life. PRACTICE IMPLICATIONS: Heightened awareness of the potential for caregiver burden and its association with quality of life among parents of children with ARM and HD may contribute to improved.

Technology Use Among Older Adults and Their Caregivers: Cross-Sectional Survey Study.

Background: Informal caregivers are called upon to provide substantial care, but more needs to be known about technology use among older adult and caregiver dyads. Objective: This study described technology use among older adults and their caregivers, explored potential correlates of technology use, and highlighted implications for practice. Methods: A cross-sectional survey was conducted among unpaid caregivers of older adults (n=486). Primary outcomes were self-reported technology (devices and functions) use among caregivers and their oldest care recipient. The concordance of technology use among caregivers and care recipients was also examined. Multivariable regression models were conducted separately for caregivers and care recipients. Results: Greater proportions of caregivers used all examined technologies, except for the medication alerts or tracking function, than care recipients. Caregivers used an average of 3.4 devices and 4.2 functions, compared to 1.8 devices and 1.6 functions used by their care recipients. Among caregivers, younger age, higher income, and higher education were associated with more technology use (P<.05). Among care recipients, younger age, not having cognitive dysfunction, and caregiver's technology use were associated with more technology use (P<.05). Conclusions: Understanding technology use patterns and device adoption across diverse caregiver and care recipient populations is increasingly important for enhancing geriatric care. Findings can guide recommendations about appropriate technology interventions and help providers communicate and share information more effectively with patients and their caregivers.

Postintensive care syndrome in patients and family members. Analysis of COVID-19 and non-COVID-19 cohorts, with face-to-face follow-up at three months and one year.

OBJECTIVE: Compare prevalence and profile of post-intensive care patient (P-PICS) and family/caregiver (F-PICS) syndrome in two cohorts (COVID and non-COVID) and analyse risk factors for P-PICS. DESIGN: Prospective, observational cohort (March 2018-2023), follow-up at three months and one year. SETTING: 14-bed polyvalent Intensive Care Unit (ICU), Level II Hospital. PATIENTS OR PARTICIPANTS: 265 patients and 209 relatives. Inclusion criteria patients: age > 18 years, mechanical ventilation > 48 h, ICU stay > 5 days, delirium, septic shock, acute respiratory distress syndrome, cardiac arrest. Inclusion criteria family: those who attended. INTERVENTIONS: Follow-up 3 months and 1 year after hospital discharge. MAIN VARIABLES OF INTEREST: Patients: sociodemographic, clinical, evolutive, physical, psychological and cognitive alterations, dependency degree and quality of life. Main caregivers: mental state and physical overload. RESULTS: 64.9% PICS-P, no differences between groups. COVID patients more physical alterations than non-COVID (P = .028). These more functional deterioration (P = .005), poorer quality of life (P = .003), higher nutritional alterations (P = .004) and cognitive deterioration (P < .001). 19.1% PICS-F, more frequent in relatives of non-COVID patients (17.6% vs. 5.5%; P = .013). Independent predictors of PICS-P: first years of the study (OR: 0.484), higher comorbidity (OR: 1.158), delirium (OR: 2.935), several reasons for being included (OR: 3.171) and midazolam (OR: 4.265). CONCLUSIONS: Prevalence PICS-P and PICS-F between both cohorts was similar. Main factors associated with the development of SPCI-P were: higher comorbidity, delirium, midazolan, inclusion for more than one reason and during the first years.

When they just don't sleep: differential impacts of reduced child sleep on depression, anxiety, and stress among caregivers of children with and without neurogenetic syndromes.

Introduction: Children with neurogenetic syndromes commonly experience significant and pervasive sleep disturbances, however, associations with caregiver mental health remains unclear. Previous studies have linked sleep disturbances with increased caregiver depression in typically developing populations, and heightened caregiver stress among neurogenetic populations. The present study expands on findings by exploring the longitudinal association between child sleep duration and caregiver mental health (depression, anxiety, stress) throughout development (infancy to school-aged children) in dyads with and without a child affected by a neurogenetic syndrome. Methods: Participants were drawn from the Purdue Early Phenotype Study, including 193 caregivers (Age: M = 34.40 years, SD = 4.53) of children with neurogenetic syndromes (Age: M = 40.91 months, SD =20.72) and typically developing children (n = 55; Age: M = 36.71 months, SD = 20.68). Children in the neurogenetic group were diagnosed with Angelman (n = 49), Prader Willi (n = 30), Williams (n = 51), and Fragile X (n = 8) syndromes. Caregivers completed assessments every six months up to child age three, and annual assessments thereafter. Child sleep duration was measured using the Brief Infant Sleep Questionnaire, and caregiver internalizing symptoms were assessed using the Depression, Anxiety, Stress Scale. Multilevel models were conducted to examine caregiver depression, anxiety, and stress in relation to child sleep duration at both between- and within-person levels, with child age as a moderator. Results: Results indicated a between-person effect of child sleep duration on caregiver depression (i.e., differences between families) and a within-person effect on caregiver stress (i.e., change over time) in the full, combined sample. These effects were not maintained when examined separately in neurogenetic and typically developing groups, except for a between-person effect on caregiver stress in the typically developing cohort. Moderating effects of child age were significant for depression and stress only in the typically developing cohort. Discussion: In summary, persistent child sleep disruptions were linked to exacerbated caregiver depression across the sample, while acute child sleep disruptions exacerbate caregiver stress within dyads over time. These findings emphasize the importance of addressing child sleep to enhance caregiver wellbeing and has potential relevance for a wide range of neurogenetic syndromes.

Examining Dutch children's vocabularies across infancy and toddlerhood: Demographic effects are age-specific and task-specific.

Limited studies have examined demographic differences in children's vocabulary in longitudinal samples, while there are questions regarding the duration, direction, and magnitude of these effects across development. In this longitudinal study, we included over 400 Dutch children. Caregivers filled out N-CDIs when children were 9-11 months (measuring word comprehension, word production, and gestures) and around 2-5 years of age (measuring word production). At 2-5 years, we also administered a receptive vocabulary task in the lab. We examined demographic effects on vocabulary size across infancy and toddlerhood. We found a disadvantage for males in infants' gestures and toddlers' vocabulary production. We found a negative effect of maternal education on infants' caregiver-reported vocabulary, but a positive effect on toddlers' lab-administered receptive vocabulary. Lastly, we found a negative effect of multilingualism - but only for the lab-administered task. Examining predictors in large, longitudinal samples ensures their robustness and generalisability across development.

2024 Alzheimer's disease facts and figures.

This article describes the public health impact of Alzheimer's disease (AD), including prevalence and incidence, mortality and morbidity, use and costs of care and the ramifications of AD for family caregivers, the dementia workforce and society. The Special Report discusses the larger health care system for older adults with cognitive issues, focusing on the role of caregivers and non-physician health care professionals. An estimated 6.9 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060, barring the development of medical breakthroughs to prevent or cure AD. Official AD death certificates recorded 119,399 deaths from AD in 2021. In 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death, Alzheimer's was the seventh-leading cause of death in the United States. Official counts for more recent years are still being compiled. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2021, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 140%. More than 11 million family members and other unpaid caregivers provided an estimated 18.4 billion hours of care to people with Alzheimer's or other dementias in 2023. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $346.6 billion in 2023. Its costs, however, extend to unpaid caregivers' increased risk for emotional distress and negative mental and physical health outcomes. Members of the paid health care and broader community-based workforce are involved in diagnosing, treating and caring for people with dementia. However, the United States faces growing shortages across different segments of the dementia care workforce due to a combination of factors, including the absolute increase in the number of people living with dementia. Therefore, targeted programs and care delivery models will be needed to attract, better train and effectively deploy health care and community-based workers to provide dementia care. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2024 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $360 billion. The Special Report investigates how caregivers of older adults with cognitive issues interact with the health care system and examines the role non-physician health care professionals play in facilitating clinical care and access to community-based services and supports. It includes surveys of caregivers and health care workers, focusing on their experiences, challenges, awareness and perceptions of dementia care navigation.

Implementation of the MiNDToolkit intervention for the management of behavioral symptoms in MND by healthcare professionals: a mixed-methods process evaluation.

OBJECTIVE: MiNDToolkit is a novel psychoeducational intervention for carers to support management of behavioral symptoms in people living with motor neuron disease (PlwMND). Implementation of MiNDToolkit involves delivery of an online intervention to carers, which is reinforced by trained healthcare professionals (HCPs). METHODS: A mixed-methods process evaluation of the MiNDToolkit feasibility trial was conducted, focusing on reinforcement of the intervention by HCPs. Quantitative data, descriptively analyzed, were included from platform analytics, questionnaire, and 10 semi-structured interviews with HCPs. Interviews were transcribed verbatim; data were inductively analyzed using Reflective Thematic Analysis. RESULTS: The MiNDToolkit training and platform is a beneficial and acceptable resource for HCPs with potential to increase knowledge and confidence in identifying and managing behavioral symptoms in MND. Implementation barriers included HCPs' perceptions that highlighting behavior changes would be burdensome to carers and assumptions that carers would take the initiative to ask for support from clinicians. Degree of intervention reinforcement varied, with most HCPs delegating intervention delivery solely to the online platform. CONCLUSIONS: Implementation of the MiNDToolkit was viewed to be feasible and the platform thought to increase accessibility of support to carers. The flexible approach to delivery (online platform and optional HCP reinforcement) is acceptable as an intervention for supporting carers of PlwMND with behavioral symptoms. However, MiNDToolkit should not negate HCP involvement in providing medical and practical information to PlwMND and families. Future research should explore ways to incorporate support for carers in the management of PlwMND alongside standard care, alongside tools such as the MiNDToolkit.

An online intervention for carers to manage behavioral symptoms in motor neuron disease (MiNDToolkit): a randomized parallel multi-center feasibility trial.

BACKGROUND: Evidence on management of behavioral symptoms in motor neuron disease (MND) is lacking. The MiNDToolkit, an online psychoeducational platform, supports carers dealing with behavioral symptoms (BehSymp). The study objectives were to ascertain recruitment and retention rates, carer and healthcare professional (HCP) use of the platform, and completion of online assessments, to inform a full-scale trial. Design: Randomized, parallel, multi-center, feasibility trial. SETTING: England and Wales, across diverse MND services; recruitment from July/21 to November/22; last participant follow-up in March/23. PARTICIPANTS: Carers of people with motor neuron disease (PwMND) with BehSymp, recruited through MND services. After confirming eligibility, participants completed screening and baseline assessments online via the MiNDToolkit platform and were randomized centrally in a 1:1 ratio to MiNDToolkit or control. INTERVENTION: MiNDToolkit offered tailored modules to carers for the 3-month study period. Carers in the intervention group could receive additional support from MiNDToolkit trained HCPs. The control group was offered access to the intervention at the end of the study. Data were collected on platform usage and psychosocial variables. MAIN OUTCOMES: One hundred and fifty-one carers from 11 sites were invited to join the study (letter, face-to-face); 30 were screened; 29 were randomized. Fifteen people were allocated to the control arm; 14 to intervention. Carers were mostly female; median age for was 62.5 (IQR: 58, 68; intervention) and 57 (IQR: 56, 70; controls). Study retention was high (24/29 = 82.76%); carers engaged with the platform on average 14 times (median (IQR):14.0 (10.0, 18.5)) during the study period. CONCLUSION: The MiNDToolkit study was feasible and well accepted by carers and trained HCPs. A definitive trial is warranted.

North Carolina Caregiver Listening Study: Caregiver Experiences and Perspectives on Services and Supports in an Aging U.S. State.

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

Assessing the Quality of ChatGPT Responses to Dementia Caregivers' Questions: Qualitative Analysis.

Background: Artificial intelligence (AI) such as ChatGPT by OpenAI holds great promise to improve the quality of life of patients with dementia and their caregivers by providing high-quality responses to their questions about typical dementia behaviors. So far, however, evidence on the quality of such ChatGPT responses is limited. A few recent publications have investigated the quality of ChatGPT responses in other health conditions. Our study is the first to assess ChatGPT using real-world questions asked by dementia caregivers themselves. objectives: This pilot study examines the potential of ChatGPT-3.5 to provide high-quality information that may enhance dementia care and patient-caregiver education. Methods: Our interprofessional team used a formal rating scale (scoring range: 0-5; the higher the score, the better the quality) to evaluate ChatGPT responses to real-world questions posed by dementia caregivers. We selected 60 posts by dementia caregivers from Reddit, a popular social media platform. These posts were verified by 3 interdisciplinary dementia clinicians as representing dementia caregivers' desire for information in the areas of memory loss and confusion, aggression, and driving. Word count for posts in the memory loss and confusion category ranged from 71 to 531 (mean 218; median 188), aggression posts ranged from 58 to 602 words (mean 254; median 200), and driving posts ranged from 93 to 550 words (mean 272; median 276). Results: ChatGPT's response quality scores ranged from 3 to 5. Of the 60 responses, 26 (43%) received 5 points, 21 (35%) received 4 points, and 13 (22%) received 3 points, suggesting high quality. ChatGPT obtained consistently high scores in synthesizing information to provide follow-up recommendations (n=58, 96%), with the lowest scores in the area of comprehensiveness (n=38, 63%). Conclusions: ChatGPT provided high-quality responses to complex questions posted by dementia caregivers, but it did have limitations. ChatGPT was unable to anticipate future problems that a human professional might recognize and address in a clinical encounter. At other times, ChatGPT recommended a strategy that the caregiver had already explicitly tried. This pilot study indicates the potential of AI to provide high-quality information to enhance dementia care and patient-caregiver education in tandem with information provided by licensed health care professionals. Evaluating the quality of responses is necessary to ensure that caregivers can make informed decisions. ChatGPT has the potential to transform health care practice by shaping how caregivers receive health information.

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study.

BACKGROUND: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. OBJECTIVE: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. METHODS: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. RESULTS: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. CONCLUSIONS: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.

Examining variability in Naturalistic Developmental Behavioral Intervention strategy use in caregivers of children with autism spectrum disorders.

BACKGROUND: Naturalistic Developmental Behavioral Interventions (NDBIs) for young children with autism spectrum disorder commonly involve caregiver-mediated approaches. However, to date, there is limited research on how caregivers' skills change, and, in turn, impact child outcomes. METHODS: We evaluated the NDBI strategy use of 191 caregivers prior to participation in NDBIs (or control groups) across multiple randomized controlled trials, using the Measure of NDBI Strategy Implementation, Caregiver Change (MONSI-CC). Clustering analyses were used to examine caregiver variability in NDBI strategy use at intervention entry. Generalized Linear Mixed Models were used to examine changes in caregiver strategy use over the course of intervention and its impact on changes in children's social communication. RESULTS: Using clustering analysis, we found that caregivers' baseline skills fit four profiles: limited, emerging, variable, and consistent/high, with few demographic factors distinguishing these groups. Caregivers starting with limited or emerging skills improved in their strategy use with intervention. Caregivers starting with more skills (consistent/high or variable) maintained higher skills over intervention. Children of caregivers in these groups who received target NDBIs improved in their social communication skills. CONCLUSIONS: Results suggested that caregiver skills improve through participation in NDBIs and may directly contribute to their children's outcomes, although more research on mediating factors is needed. Individualized approaches for caregivers and their children starting with differing skill profiles at intervention entry may be warranted.

"Walk me through the final day": A thematic analysis study on the family caregiver experience of the Medical Assistance in Dying procedure day.

BACKGROUND: Legalization of assisted dying is progressively expanding worldwide. In Canada, the Medical Assistance in Dying Act became law in 2016. As assisted dying regulations evolve worldwide, comprehending its subjective impact and broader consequences, especially on family members, becomes pivotal for shaping practice, policy, and training. AIM: The goal of this study is to understand the experience of family caregivers on the assisted dying procedure day. DESIGN: Qualitative, thematic analysis, research using semi-structured interviews. SETTING/PARTICIPANTS: Family caregivers of patients who received assisted dying in two hospitals in Canada were recruited. Interviews were conducted at least 6 months after patient death. Conceptual saturation was achieved after analyzing 18 interviews. RESULTS: While caregivers expressed gratitude for the availability of Medical Assistance in Dying, they also described the procedure day as potentially jarring and unsettling. We identified five aspects that shaped their experience: attuned support from the clinical team; preparation for clinical details; congruence between the setting and the importance of the event; active participation and ceremony; and pacing and timing of the procedure. Together, these aspects impacted the level of uneasiness felt by caregivers on the procedure day. CONCLUSIONS: This study emphasized the importance of a family-centered approach to delivering Medical Assistance in Dying. It underscored recognizing the needs of family caregivers during the procedure day and offering strategies to ease their experience. Healthcare providers in jurisdictions where assisted dying is legal or deliberated should consider the applicability of these findings to their unique context.

Service Provider Perspectives on Advance Care Planning Use in Rural Dementia Patients and Caregivers: A Qualitative Study.

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

The relationship between family resilience, post-traumatic growth, and caregiver burden among family caregivers of stroke survivors: a cross-sectional study.

The study aimed to explore the relationship between family resilience, post-traumatic growth(PTG), and caregiver burden among family caregivers of stroke survivors. Researchers conducted a cross-sectional study to recruit 253 family caregivers of stroke survivors from a public hospital in Shandong Province, China. Caregivers completed sociodemographic information, the Shortened Chinese Version of the Family Resilience Assessment Scale, the Post-traumatic Growth Inventory, and the Zarit Caregiver Burden Interview. We used Amos 24.0 to construct structural equation models and examine the mediating effects of stroke survivors' post-traumatic growth. Family resilience was positively associated with post-traumatic growth, and both family resilience and post-traumatic growth were negatively associated with caregiver burden. Post-traumatic growth partially mediated the relationship between family resilience and caregiver burden, and the mediating effect accounted for 21.27% of the total effect. Targeted interventions should address family resilience and post-traumatic growth as protective factors of caregiver burden.

Understanding caregiver burden and quality of life in Kerala's primary palliative care program: a mixed methods study from caregivers and providers' perspectives.

BACKGROUND: Family caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses' perceptions of the family caregivers' issues. METHODS: We did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews. RESULTS: Older caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854-0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907-0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912-0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970-0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this. CONCLUSION: In our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.