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Previous research has explored the physical activity habits of people with dementia and their family carers separately, with little consideration of how physical habits are associated within dyads. In this observational study, we sought to explore the relationship between people with dementia and their carers' physical activity, at a group level and at a dyadic level. Twenty-six participant dyads (persons with dementia and their carer spouses) were asked to wear an accelerometer for 30 days continuously. Comparisons were made at a group level and a dyadic level. People with dementia did not participate in significantly more moderate to vigorous physical activity (M = 15.44 min/day; SD = 14.40) compared with carers (M = 17.95 min/day; SD = 17.01). Within dyads, there were moderately strong associations between daily moderate to vigorous physical activity (r =.48–.54), but not with overall activity levels (r =.24). Despite physical activity habits remaining relatively low within people with dementia and carers, respectively, moderate to vigorous physical activity levels appear to be correlated within dyads. Understanding mutual influence on physical activity levels within dyads is an important pathway to promote an active lifestyle. [ABSTRACT FROM AUTHOR]

Purpose: To describe which needs and difficulties are experienced by stroke patients and caregivers regarding their return to work and to synthesise the lived experiences of stroke patients and caregivers. Materials and methods: A systematic review and metasynthesis was conducted on PubMed, CINAHL, Scopus, Web of Sciences and PsycInfo, in according to the Enhancing Transparency in Reporting the Synthesis of Qualitative Research. Studies eligible for the review had to fulfil the following inclusion criteria: qualitative studies, stroke patients and their caregivers in a working age (approximately from 18 to 65 years old), discharged from the hospital. Results: Thirty-eight studies involving stroke patients and caregivers were included in this review. For the stroke patients' group, three main themes were identified: (a) Towards the future; (b) Professional support in return to work; and (c) return to work and employment perspective, while for caregivers two main themes were: (a) daily life challenges and role overload; and (b) employment challenges. Conclusions: Integrating public employment, social and health services, support for job placement, return to work, and social participation of stroke patients should be more supported in individual rehabilitation programs to help stroke survivors and caregivers in their return-to-work process. IMPLICATIONS FOR REHABILITATION: A program for returning to work after stroke should be developed as part of neurorehabilitation. Stroke survivors and caregivers need psychological and social support during rehabilitation. Integrating public employment, social and health services, support for job placement, return to work, and social participation would help stroke survivors and caregivers in the return-to-work process. [ABSTRACT FROM AUTHOR]

Background: The number of children diagnosed with cancer is expected to increase by 2050. The caring aspect of these children is usually left to members of the family, more so the mothers. Caregivers are usually faced with various challenges, such as financial issues, social stigma, and emotional and psychological issues. Caregivers use various coping strategies to manage the challenges they experience in the caring process, which can be positive or negative coping strategies. Objective: To explore the challenges and coping strategies of caregivers of children with cancer receiving care at a national referral hospital in Kenya. Methods: This study employed a descriptive phenomenological approach to explore the challenges and coping strategies of caregivers of children with cancer receiving treatment at a national referral hospital in Kenya. Purposive and snowball sampling techniques were used to select 44 participants for five focus group discussions (FGDs) conducted between October and December 2023. The data were analysed via inductive thematic analysis. Results: Four themes arose from the challenges experienced, which included psychological, financial, treatment-related, and social/family-related issues. These eleven subthemes included stress, depression, lack of transport, lack of food, loss of employment, treatment delays, and marital issues, among others. Two themes related to coping strategies were positive adaptation and denial, which were highlighted as negative coping strategies. Positive coping included praying, crying, talking to people, and seeking help. Conclusion: Caregivers of children with cancer undergo various challenges and apply various coping strategies to try and adapt to their new normal. Reinforcing positive coping strategies and helping caregivers utilize other coping strategies, such as the use of support groups, could help them better care for their children. [ABSTRACT FROM AUTHOR]

Background: Women experiencing substance use during their pregnancies or after the birth of a child report being fearful of losing their children based on care, stigmatized when seeking assistance, and barriers to care such as having to provide the same information to different providers, and having to repeat their lived experiences with substance use in detail. Particularly these service barriers can be confusing, complicated, and difficult to follow, which could lead to non-compliance or not seeking services. Objectives: We evaluated components of a service coordination program for women experiencing substance use, their children, and larger families who help with caregiving. We examined stakeholder interest in the program, feasibility providing services over time, and initial program effectiveness. Design: Participant enrollment and outcomes as well as service coordination activities provided over a 4-year period was gathered across three demonstration site locations (a birthing hospital, reunification program, and home visiting program). Methods: Program information was gathered from needs assessment data, health survey data from enrolled caregivers and infants, training evaluations, and budget recordings of direct aid. In this mixed method design, we examined potential differences between baseline and the last assessment for women and children enrolled in the program. We also utilized univariate analyses of variance to examine the main effects of maternal and infant characteristics on final maternal and infant outcomes. Results: Three sites enrolled 182 women and families for program services. Patient navigators provided direct aid, training, goal setting, and service coordination and planning. Families remained in the program, on average, 655 days and were satisfied with the services received. Respondents thought the program elements were easy to implement within the rural setting. The program effectively addressed basic needs, violence (p < 0.001; η2 = 0.34 (0.05–0.53)), infant development (p < 0.02; η2 = 0.51 (0.13–0.61)), and maternal depression (p < 0.05; η2 = 0.9 (0.00–0.22)). Select outcomes did differ by site. Conclusion: A service coordination model utilizing a patient navigator role to coordinate client services coupled with an approach that serves the infant and caregiver needs was feasible and desirable by all stakeholders within a rural setting. Service coordination effectively impacted select caregiver and infant outcomes. Plain language summary: Study using various reports from women who have, or still are, using substances, their family members, and providers about a service coordination structure designed to complement existing services for women and families in the rural setting. Why was the study done? Services for women who have, or still use, substances and their families are limited in rural settings. When they do exist, they are often disjointed, duplicative, and difficult to navigate. We hypothesized that a service coordination program with a key role available to help families navigate services would improve caregiver and family outcomes in many areas. What did the researchers do? The research team identified specific services offered in one program over the past five years. The program was given to women and families who had infants two years or younger and lived in rural communities. Caregivers and providers offered feedback about their experiences in the program. Caregiver and infant health were assessed and used to see if the program had a positive impact. What did researchers find? 182 families successfully enrolled in the program and stayed involved for an average of two years. Families and providers thought the program was easy to provide and navigate. They valued the role of the patient navigator and money offered to pay for essentials, if needed, was thought to be a key benefit, especially during COVID. What do the findings mean? Families may experience greater benefits from services if they have support for daily needs, when crises occur, someone to help navigate multiple services, and access to information when needed. These services are easy to provide and could be offered in rural communities. [ABSTRACT FROM AUTHOR]

Background: Fall risk and incidence increase with age, creating significant physical and mental burden for the individual and their care provider. Lift assistive devices are used in multiple healthcare facilities, but are generally not portable nor self-operational, limiting their use outside of medical supervision. The RaymexTM lift is a novel lift assistance device within a rollator to address these limitations. We aim to gather user-centered feedback on the RaymexTM lift, set up instructions, safety protocols to improve feasibility and usability, and explore the potential usability as a fall recovery or prevention device. Methods: Four older adults, two informal caregivers and 16 formal caregivers (clinicians and continuing care assistants) participated in a focus group. Participants provided feedback on the RaymexTM lift after viewing a demonstration and using the device. Qualitative and quantitative data were analysized using thematic and descriptive analysis respectively. Results: Participants highlighted three major themes: (1) Design features requiring improvement, (2) Positive feedback and suggestions to optimize the RaymexTM lift and (3) Pricing vs. social utility. Participants suggested widening the seat, changing the braking button layout, and lowering the device weight to improve usability. Participants believed the main device feature was fall recovery and had implications for social utility by reducing the need for ambulance visits to the home. Price point led to a concern on affordability for older adults. Conclusion: The feedback gained will advance the development of the RaymexTM lift and may highlight cost-effective design choices for other developers creating related aging assistive technologies. [ABSTRACT FROM AUTHOR]

Introduction: When young children experience recurrent respiratory infections, caregivers face the challenge of preventing new episodes whilst maintaining close rapport with their children. Pediatric massage, such as pediatric Tuina, entails soft massage of the skin, administered by trained providers. This non-pharmaceutical measure is used to prevent new respiratory infections in China. The aim of this study is to deepen our understanding of caregivers' experiences and perceptions of providing pediatric Tuina treatment to their children with recurrent respiratory tract infections. Methods: A qualitative study, based on semi-structured interviews, was conducted in accordance with the Consolidated Criteria for Reporting Qualitative Research checklist. Sixteen mothers from Southern China, whose children had received pediatric Tuina for recurrent respiratory tract infections, participated online. Analysis was conducted according to the principles of reflexive thematic analysis, using the NVivo qualitative research software. Results: The overarching theme was "Fostering embodied care with children". Caregivers assessed pediatric Tuina by hearing others' experiences of pediatric Tuina, as well as observing the manipulations on their child's body and their bodily reactions during pediatric Tuina sessions. Caregivers also closely observed children's bodily changes after pediatric Tuina sessions. Embodied attachment between children and adults was nurtured through the pediatric Tuina. Compared to other treatments or medical consultations, children were more relaxed and more involved in embodied care, which involved direct skin touching and verbal communication from the pediatric Tuina provider. Children also took the initiative to bring pediatric Tuina into their family life, by asking caregivers to perform it on them and mimicking the manipulations on the caregivers' hand. Conclusions: Pediatric Tuina served as a means of interaction between children and adults, fostering an embodied care on both a physical and emotional level. Beyond its potentially preventive effect on recurrent respiratory tract infections, pediatric Tuina could be a support for parents of children with recurrent or chronic disease at home. [ABSTRACT FROM AUTHOR]

Previous research has supported selecting development‐matched targets rather than age‐matched targets to teach play skills to children with autism spectrum disorder. However, few studies have been conducted, and replications and extensions of this research are needed. The current study replicated Pane et al. (2022) by comparing the acquisition of development‐matched and age‐matched play targets when teaching play skills to four children with autism. No contrived prompts or consequences were used to teach play skills in either condition. Extensions included identifying targets via a newer version of the Developmental Play Assessment, targeting different play categories, assessing additional imitation skills, and conducting a caregiver assessment to identify socially valid toys, play actions, and vocalizations based on each participant's common experiences and preferences as well as their caregiver's values and preferences. As in Pane et al., participants demonstrated a higher level of scripted play actions in the development‐matched condition. [ABSTRACT FROM AUTHOR]

Background: Community nurses (CN), both generalist and palliative care-specific, are key to supporting the carer with their experience of grief. Aim: To identify the grief-related needs of carers and the capacity of CNs to provide for those needs. Methods: A convergent parallel mixed-methods study which employed i) a needs questionnaire among carers of palliative care patients who had recently died; ii) a qualitative interview study among carers and iii) a questionnaire among CNs which canvassed their confidence and skills in working with carer grief. Findings: In the carer survey, just one-third of carers reported engagement with CNs regarding prolonged and anticipatory grief. In the CN survey, low confidence and skill regarding supporting carers with their grief was reported. CNs with palliative care training were more confident and knowledgeable than generalist CNs. Conclusions: Despite offering high ratings for CN compassion and overall quality of support during the dying process, grief support was reported by carers to be missing from their experience of CN care. The role of CNs in providing for the grief-related needs of carers is yet to be established. [ABSTRACT FROM AUTHOR]

Rationale: Family members of patients who die in an intensive care unit (ICU) are at heightened risk of post-traumatic stress disorder (PTSD) symptoms. Not all surrogates develop these symptoms and heterogeneity exists in PTSD symptom clusters. Objectives: The study tested a personality model of PTSD symptoms in bereaved family caregivers of ICU patients. It was hypothesized that family members endorsing higher levels of neurotic personality traits would report higher levels of PTSD symptom clusters and that these associations would be explained by tendencies to view the patient's death as unexpected and to cope by suppressing their emotions. Methods: Participants were family members of ICU patients at an urban, academic medical center who either died or were discharged to an inpatient hospice unit. Participants were contacted for participation at least six months after the patient's death. Participants completed measures of personality, emotion regulation, and PTSD symptoms. Data were analyzed using path analysis. Results: Approximately one-third (35%) of the sample of 162 caregivers endorsed at-risk levels of PTSD. Individuals reporting higher levels of neurotic personality traits reported more PTSD symptoms (r = 0.53, p < 0.001). Perceptions that the patient death was unexpected partially explained the association of neuroticism with the intrusive re-experiencing PTSD symptoms (B = 0.45, p = 0.031). In contrast, emotional suppression partially explained the association of neuroticism with avoidance (B = 0.70, p = 0.010) and hyperarousal symptom clusters (B = 0.37, p = 0.041). Conclusions: Family vulnerability to PTSD after an ICU death can be conceptualized based on neurotic personality traits. Tendencies to view the patient's death as unexpected may contribute to intrusive thoughts and memories of the ICU experience. Individuals may avoid reminders and remain at heightened levels of arousal when they suppress their emotional experiences. Key Message: Family members who experience the death of a loved one following ICU treatment are vulnerable to PTSD symptoms. These reactions to ICU-related losses may be shaped by family members' personalities, expectations, and emotion regulation styles. Understanding these characteristics could inform family screening and intervention efforts in the ICU. [ABSTRACT FROM AUTHOR]

Mild cognitive impairment (MCI) marks a critical phase in the progression to dementia. In our study, social workers utilized the Multicomponent Nonpharmacological Intervention Approach (MCNIA) to aid MCI participants (N = 52) and their caregivers, dividing into intervention and control groups. The intervention group underwent an additional regimen of non-pharmacological therapies besides pharmacological treatment. Our findings highlighted that: 1) MCNIA significantly enhanced cognitive and daily living abilities in the intervention group; 2) Caregivers experienced reduced burdens and improved social support; 3) Correlation analyses involving biomarkers indicated that MCNIA was particularly effective in alleviating depression in those with slightly more severe cognitive impairment. [ABSTRACT FROM AUTHOR]

Perceived threat of Alzheimer's disease and related dementias (ADRD) has been found a widespread phenomenon in developed countries, but has not yet been fully explored in developing countries. Analyzing data from 300 family caregivers of older adults with cognitive impairment in China, this study found caregiver burden was positively associated with the perceived threat of ADRD, and this association was buffered by higher family income and longer caregiving time. To alleviate undue ADRD concerns, it suggests expanding respite care and community elder care beds, and initiating education programs on reducing unnecessary worries about developing ADRD. [ABSTRACT FROM AUTHOR]

Our study examines the impact of informal care on healthcare utilization, focusing on caregiver types, urban-rural, and gender differences. Analyzing data from the China Health and Retirement Longitudinal Study and using fixed effects models, we discovered complementary effects between informal care and healthcare. Specifically, spousal care increased inpatient care use, adult child care boosted both inpatient and outpatient use, and dual care from children and spouses showed the most significant impact on healthcare use. The association between informal care and healthcare use varied across gender or urban-rural residence. Our findings highlight the importance of caregivers in accessing healthcare services. [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]

Young people in residential care in Australia have generally experienced significant childhood trauma and neglect. Consequently, they present with a range of complex and challenging behaviours that pose a risk to themselves and others. Numerous reports have emphasised the need for trauma therapy for children; however, young people in residential care frequently do not access effective therapeutic services. In this article, the authors detail and reflect on the implementation of a treatment package of the Sleeping Dogs method plus Eye Movement Desensitisation and Reprocessing (EMDR) to engage young people living in residential care in EMDR therapy to process their complex trauma. IMPLICATIONS An integrated treatment package of Sleeping Dogs method with intensive EMDR can overcome the barriers to the successful implementation of evidence-based trauma treatment with young people living in residential care. Implementation requires collaboration between all systems surrounding the young person and compassionate engagement with families and carers. [ABSTRACT FROM AUTHOR]

Research has evidenced that purpose in life helps to minimise the strains of providing informal care to a significant other, but little is known about whether this psychological resource influences the paths from stressors to the health outcomes of family caregiving and through which mechanisms it can exert this protective effect. This study aimed to explore the moderating role of purpose in life on the (mediated through adaptive coping) relationship between caregiver burden and psychological distress in haemodialysis caregivers. A cross‐sectional study was conducted with a convenience sample of family caregivers (n = 173; M = 55.9, SD = 15.6 years old) of adults undergoing haemodialysis. A moderated‐mediation model was computed to explore the interaction effects of purpose in life on the path between burden and distress, having adaptive coping behaviours as parallel mediators. Results showed that purpose in life had a buffering effect on the mediated (through acceptance coping) relationship between burden and distress (index of partial moderated‐mediation: bsimple = −0.029, 95% bootstrap confidence interval (CI) [‐0.070, −0.002]), and that this conditional effect was lowest at high levels of the moderator (at +1SD: bsimple = 0.038, SE = 0.026, 95% bootstrap CI [0.001, 0.098]). Use of emotional support (F(1,159) = 4.395, p = 0.038) and positive reframing (F(1,159) = 5.648, p = 0.019) also mediated this path. This study expands knowledge about the modifiable internal resources through which purpose in life can help promote psychosocial adjustment to the haemodialysis caregiving process. Mental health promotion initiatives aimed at this population need to consider combining different intervention approaches to foster purpose in life and train adaptive (and flexible) coping skills. [ABSTRACT FROM AUTHOR]

Parental burnout (PB) is characterised by parental exhaustion resulting from exposure to chronic parental stress. Due to the social and economic changes resulting from the COVID‐19 pandemic that impacted families, there is a significant scientific interest in identifying factors related to PB within the pandemic context. This study aimed to analyse the relationships between parental stress (parental concerns, parental satisfaction, lack of control, and fears and anxieties), family functioning, psychological morbidity (anxiety and depression), and burnout in parents. The sample consisted of 253 parents, legal guardians or primary caregivers of children aged between 0 and 6 years. Results revealed that the child's age, psychological morbidity (depression), and parental stress were significant predictors of PB. Anxiety and family functioning played a moderating role in the relationship between parental satisfaction and PB. According to the results, intervention programs should focus on anxiety symptoms and family functioning to mitigate the effects of parental stress on PB. [ABSTRACT FROM AUTHOR]

Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers. [ABSTRACT FROM AUTHOR]

Collectively, Ethiopians and Eritreans represent one of the largest African immigrant groups in the US, yet no research to date exists on families from these communities raising autistic children. The purpose of our study was to examine the experiences of Ethiopian and Eritrean families of autistic children including experiences (1) receiving the autism diagnosis and interacting with healthcare providers, (2) obtaining services and supports for children (including satisfaction with services and barriers to care), and (3) accessing services and supports for caregivers and families (including needs and barriers to care). Ethiopian and Eritrean parents (N = 51) raising autistic children in the US completed an online survey. Parents reported limited prior knowledge of autism within their communities and had varied experiences with healthcare providers through the diagnostic process. They endorsed barriers to accessing care for their child and family supports (such as provider shortages and cost of services), service needs, and dissatisfaction with school-based and behavioral supports. Many parents reported a negative impact on workforce participation in order to meet their child's needs. Parents identified needs that would benefit their autistic children and families, such as accessible support groups to obtain relevant information. To our knowledge, this is the first systematic study exploring the experiences of Ethiopian and Eritrean families raising autistic children in the US. We discuss implications of our findings and recommendations for culturally responsive care. [ABSTRACT FROM AUTHOR]

Caregivers of children with autism spectrum disorder (ASD) often report higher rates of depression and the related negative thought patterns that may precede a clinical diagnosis. These negative thought patterns are referred to as depressive cognitions. Depressive cognitions are exacerbated by child problem behaviors (CPB) but may be impacted by parental resilience. The current study examines relations between CPB and depressive cognitions and the role of resilience as a moderator among caregivers of children with ASD (n = 287) and a sample of caregivers of children who are typically developing (n = 207). Significant positive associations were found between CPB and depressive cognitions for caregivers of children with ASD and who are typically developing. A moderation analysis revealed that, among the ASD sample, the model accounted for 33% of the variance in caregiver depressive cognitions (R2 = 0.33, SE = 35.52, p < 0.001). The interaction of child problem behaviors and caregiver resilience on caregiver depressive cognitions was statistically significant (B = − 0.016, SE = 0.007, p = 0.037), thus resilience was a significant moderator, for caregivers of children with ASD. Resilience serves as a protective factor in the relationship between child problem behavior and caregiver depressive cognitions for caregivers of children with ASD only. This finding highlights the importance of assessing and supporting resilience among caregivers of children with ASD. Interventions addressing child behavior would benefit from additional components to bolster caregiver resilience to enhance caregiver mental health and protect against depressive cognitions. [ABSTRACT FROM AUTHOR]

Background: One‐third of people living with dementia (PLWD) have highly fragmented care (i.e., care spread across many ambulatory providers without a dominant provider). It is unclear whether PLWD with fragmented care and their caregivers perceive gaps in communication among the providers involved and whether any such gaps are perceived as benign inconveniences or as clinically meaningful, leading to adverse events. We sought to determine the frequency of perceived gaps in communication (coordination) among providers and the frequency of self‐reported adverse events attributed to poor coordination. Methods: We conducted a cross‐sectional study in the context of a Medicare accountable care organization (ACO) in New York in 2022–2023. We included PLWD who were attributed to the ACO, had fragmented care in the past year by claims (reversed Bice‐Boxerman Index ≥0.86), and were in a pragmatic clinical trial on care management. We used an existing survey instrument to determine perceptions of care coordination and perceptions of four adverse events (repeat tests, drug–drug interactions, emergency department visits, and hospital admissions). ACO care managers collected data by telephone, using clinical judgment to determine whether each survey respondent was the patient or a caregiver. We used descriptive statistics to summarize results. Results: Of 167 eligible PLWD, surveys were completed for 97 (58.1%). Of those, 88 (90.7%) reported having >1 ambulatory visit and >1 ambulatory provider and were thus at risk for gaps in care coordination and included in the analysis. Of those, 23 respondents were patients (26.1%) and 64 were caregivers (72.7%), with one respondent's role missing. Overall, 57% of respondents reported a problem (or "gap") in the coordination of care and, separately, 18% reported an adverse event that they attributed to poor care coordination. Conclusion: Gaps in coordination of care for PLWD are reported to be very common and often perceived as hazardous. [ABSTRACT FROM AUTHOR]

Background: Spouses of persons living with dementia face intense strains on their well‐being compared with similarly aged adults and spouses of partners with no dementia. This strain can impact spouses' health and healthcare needs, and therefore affect their healthcare utilization and expenditures. Methods: Using data from the Health and Retirement Study linked with Medicare claims, we matched dyads of spouses and their partners with dementia (SPWD) to a comparison group of similar spouses and their partners with no dementia (SPWND). We then examined Medicare expenditures for spouses in the 5 years following their partner's dementia onset month using a two‐part regression model. Results: SPWD cumulative total Medicare expenditures were, on average, $60,043 in the 5 years post dementia onset, compared to $56,068 for SPWND. This difference ($3974, 95% CI = [−$3,199; $11,477]) was not significant. However, there were significant differences in the 5th year's total expenditures (+$2,748 [$321; $5,447]), driven by inpatient expenditures ($1,562 [$22; $3,277]). Conclusions: Despite the differences in partner's dementia status, we found no significant difference in the 5‐year cumulative Medicare expenditures between SPWD and SPWND. Compared to previous studies, we likely captured an earlier stage of dementia more consistently for a broader population which may be less straining on spouses. Further research should examine patterns of expenditures in later years and around critical timepoints in caregiving, such as partner transitions to formal long‐term care settings and death, to better understand healthcare expenditures for spouses of persons living with dementia. See related editorial by Horstman. [ABSTRACT FROM AUTHOR]

The article discusses research which aimed to quantify the daily care hours that informal caregivers provide to patients with diagnosed dementia, undiagnosed cognitive impairment (CI), and intact cognition. Cited are the characteristics of patients and caregivers included in the study, the substantial caregiving needs of older adults with undiagnosed CI, and findings highlighting the importance of cognitive screening in the emergency department (ED) and outpatient testing.

Social camouflaging in autism involves hiding social differences and autistic traits to fit in with neurotypical settings and is associated with poorer mental health in both autistic adolescents and adults. This study explored the association between self-reported social camouflaging behaviours and adolescents' self-report of generalised anxiety disorder and depressive symptoms compared with caregiver reports. A clinical sample of 43 autistic and 39 non-autistic adolescents (14–19 years), without intellectual disability and matched on social anxiety, and their primary caregiver completed questionnaires reporting the young person's autistic traits, generalised anxiety disorder and depression symptoms. Using response surface analysis, congruence between adolescent and caregiver rated autistic traits, generalised anxiety disorder and depression symptoms were not associated with greater camouflaging scores. Response surface analysis parameters showed that camouflaging was greater when both adolescent and caregivers rated high levels of autistic traits and generalised anxiety disorder symptoms, and when adolescents exceeded caregiver ratings on autistic traits, generalised anxiety disorder and depression symptoms. Adolescents who experience greater anxiety and autistic traits may engage in more (though less effective) social camouflaging behaviours, which in turn may contribute towards poorer mental health outcomes. Clinicians may benefit from collaboratively creating with adolescents a person-centred formulation that considers the associations between autistic traits and mental health outcomes. Social camouflaging or masking refers to strategies autistic individuals adopt to hide their autism persona when trying to fit in. It is unclear whether camouflaging is only applicable to social differences unique to autism, or more generally to any types of social difference, such as experiences of mental health difficulties. We asked 43 autistic and 39 non-autistic adolescents (aged 14–19 years, all of whom showed similarly high levels of social anxiety) and their primary caregivers to complete questionnaires about their mental health (anxiety and depression) and autistic traits, and adolescents self-reported camouflaging behaviours. We wondered if camouflaging may be used to hide mental health difficulties reported by young people and affect caregiver report on symptom severity. We found that adolescents who self-reported greater levels of autistic traits, anxiety and depression symptoms compared with their caregivers reported greater camouflaging. Adolescents who agreed on having high levels of autistic traits and anxiety symptoms with their caregivers reported greater camouflaging behaviours. We discuss how having high levels of autistic traits and anxiety may increase adolescents' camouflaging behaviours to hide social differences, which may contribute towards poor mental health outcomes. We think it is important to talk with adolescents about how camouflaging social and mental health difference can have negative impacts for mental health as well as possible positive social gains. [ABSTRACT FROM AUTHOR]

Autism is a lifelong condition characterized by repetitive and restrictive behaviors and differences in social communication. The reported prevalence of autism has risen exponentially in the past years. Early identification and subsequent early intervention are key to promoting better outcomes for autistic individuals. However, there is a dearth of research focusing on understanding variables that impact the age of diagnosis of autistic children in Paraguay. We collected data from 176 caregivers of autistic individuals aged 18 years or younger who lived in Paraguay and conducted a hierarchical regression analysis to understand whether demographic and clinical variables predicted the age of autism diagnosis in Paraguayan autistic children. Our results indicated that child's age, child's age at caregivers' first concerns for their development, and child's verbal skills were significant predictors of the age of autism diagnosis in Paraguay. Educating caregivers and professionals to increase awareness of autism characteristics and atypical behaviors in social communication beyond verbal skills may support the early identification of autism and subsequent access to early intervention. Autism is a lifelong condition characterized by repetitive behaviors and social communication differences. The reported cases of autism increased globally in the past years. Detecting autism early and providing appropriate supports promptly are crucial for better outcomes. Yet, little research focuses on what factors interplay in the diagnostic process of autistic children in Paraguay. We gathered data from 176 caregivers of autistic children under 18 years in Paraguay. Through a detailed analysis, we found that child's age, child's age at the caregiver's first concerns about their development, and the child's verbal skills are key in predicting the age of autism diagnosis in Paraguay. Educating caregivers and professionals about autism and social communication development can help identify autism early and provide timely support. [ABSTRACT FROM AUTHOR]

Black and non-White Latinx children have historically been diagnosed with autism at a later age and with more significant impairments than White peers. This study aimed to gather insights from members of the autism service provider workforce on current barriers and facilitators to achieving equity in early childhood autism evaluation, referrals, and treatment. We employed a qualitative descriptive design using semi-structured virtual focus groups with autism experts in North Carolina (N = 26). Our final sample included pediatric clinicians across disciplines, researchers, family/caregiver advocates, and policymakers/government representatives. We identified four overarching themes representing challenges to equitable autism service provision: (1) workforce composition and recruitment concerns, (2) workforce capacity and accessibility concerns, (3) workforce compensation obstacles, and (4) COVID-19 pandemic adaptations' impact. Our findings demonstrate the need for improved workforce diversity, autism-specific education, adequate compensation, and interventions to address burnout. To remediate existing barriers to equity, diversity in recruitment across training levels, cultural awareness, autism education for all pediatric providers, and partnerships with caregivers as experts must be prioritized. These investments in the autism workforce will allow its interdisciplinary professionals to better meet the needs of children and families from historically marginalized communities and achieve equitable early childhood service provision. Black and non-White Latinx children tend to receive autism diagnoses later in life and with a higher degree of impairment than White children. The purpose of this study was to learn what is currently helping as well as preventing Black and non-White Latinx children from getting access to autism evaluation and services. We held virtual interviews with 26 experts who work with autistic children and their families, including clinical providers, researchers, advocates, and policymakers/government representatives. From these interviews, we identified four themes that have an impact on equity in autism services: (1) who makes up the workforce, (2) w orkforce capacity and accessibility, (3) workforce payment structure, and (4) changes due to the COVID-19 pandemic. These findings show the need for improved workforce diversity, autism-specific education, payment structures, and additional support for workforce members to avoid burnout. To make childhood autism services more equitable, diversity in recruitment across training levels, cultural awareness, increased autism education for all pediatric providers, and partnerships with caregivers as experts must be prioritized. These investments in the autism workforce will allow professionals in the field to better meet the needs of children and families from Black and non-White Latinx communities and achieve equity in early childhood autism services. [ABSTRACT FROM AUTHOR]

Although help-seeking research is useful to improve the quality of dementia care and mental health of care staff, most studies have focused on family caregivers. The details of help-seeking behavior among care staff remain unclear. This study investigated the features of help-seeking behavior among staff working in long-term care facilities. Two online surveys were conducted, targeting individuals working in long-term care facilities in Kinki Region, as well as general citizens who are users of crowdsourcing services across all regions of Japan. Four hypothetical difficult caregiving situations were developed to examine staff help-seeking behavior, including older people's going-home behavior, care resistance, apathy, and depression. When confronted with difficult situations, participants responded regarding whether they sought help from other staff, the timing of help-seeking when they chose to seek help from others, and the level of burden to deal with the situations. A total of 505 participants (273 care staff and 232 general citizens) were analyzed. Two-way analysis of variance (ANOVA) revealed that the burden in all situations experienced by general citizens was higher than that among care staff. Three-way ANOVA also showed that excessive help-seeking styles were associated with difficult care situations. Finally, care staff engaged in help-seeking behavior more quickly than general citizens. The current findings showed that, compared to general citizens, care staff exhibited more frequent help-seeking behavior, which would be helpful to support problem-solving or alleviate the burden of care. Additional research is necessary to clarify the functions of help-seeking behavior in dementia care. [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]

Objectives Informal care provided by adult children is of great importance for older adults' well-being in China. This paper investigates and compares the functional transitions among older adults living in rural areas who receive care from daughters' and from sons' families. Methods This study utilizes the "Well-being of Elderly Survey in Anhui Province" (WESAP) from 2001 to 2021. Our sample included 2,797 individuals aged 60 years or older. Functional status was based on the activities of daily living and the instrumental activities of daily living. We employed a random-effects ordered logit model to examine the functional transitions among the older adults. Results Receiving care from daughters' families is significantly associated with a lower likelihood of functional decline compared to receiving care from sons' families in rural China. The advantage associated with daughter care becomes more pronounced among older individuals with a severe functional difficulty compared to those with a mild or moderate functional difficulty. The difference is prevalent among older adults aged 75 and older, with less wealth or multiple chronic diseases, or who live alone. Furthermore, among those with severe functional difficulties, the daughter advantage is more significant for fathers as compared to mothers. Discussion Nowadays, daughters' families can provide high-quality informal care, often surpassing that offered by sons' families. This daughter advantage becomes even more significant among older adults who have a higher need for family care, such as those with severe disabilities and limited financial resources. [ABSTRACT FROM AUTHOR]

Background: Low-cost, scalable strategies are necessary to reach the UNAIDS 2030 target of ending HIV as a public health threat. Use of treatment partners, informal caregivers selected by people living with HIV to support antiretroviral therapy adherence, is one such strategy that is included in many countries' HIV guidelines, including Botswana, a country with high HIV prevalence. Method: From June 2021 to June 2022, we pilot tested a clinic-based treatment partner intervention ("Mopati"), including standardized language for providers to guide patients on treatment partner selection and workshops to train treatment partners on providing non-directive support to patients using a non-confrontational, non-judgmental approach. Sixty unsuppressed patients (30 per clinic) and 45 treatment partners (17 intervention, 28 control) were recruited from an intervention–control clinic matched-pair in Gaborone, Botswana. Results: Mopati had medium-to-large effects on increasing patients' adherence, adherence self-efficacy, intrinsic adherence motivation, and perceived non-directive support from treatment partners, and decreasing treatment partner caregiver burden. Aggregate viral suppression rates significantly increased in the intervention (vs. control) clinic. Qualitative data from 14 clinic staff, 21 patients, and 16 treatment partners indicated that Mopati was viewed as effective. Providers said the guidance empowered them to be proactive in communicating about adherence; most reported using the guidance. Conclusion: This study shows preliminary support for the use of treatment partners in HIV care, and further evidence for interventions that leverage patients' existing support. This research can inform ways to improve adherence to HIV treatment as well as the treatment of HIV-related comorbid conditions in lower-resource settings. Trial Registration: ClinicalTrials.gov Identifier: NCT04796610. [ABSTRACT FROM AUTHOR]

Background: Although older adults with heart failure (HF) and multiple chronic conditions (MCC) frequently rely on caregivers for health management, digital health systems, such as patient portals and mobile apps, are designed for individual patients and often exclude caregivers. There is a need to develop approaches that integrate caregivers into care. This study tested the feasibility of the Social Convoy Palliative Care intervention (Convoy-Pal), a 12-week digital self-management program that includes assessment tools and resources for clinical palliative care, designed for both patients and their caregivers. Methods: A randomized waitlist control feasibility trial involving patients over 65 years old with MCC who had been hospitalized two or more times for HF in the past 12 months and their caregivers. Descriptive statistics were used to evaluate recruitment, retention, missing data, self-reported social functioning, positive aspects of caregiving, and the acceptability of the intervention. Results: Of 126 potentially eligible patients, 11 were ineligible and 69 were deceased. Of the 46 eligible patients, 31 enrolled in the trial. Although 48 caregivers were identified, only 15 enrolled. The average age was 76.3 years for patients and 71.6 years for caregivers, with most participants being non-Hispanic White. Notably, 4% did not have access to a personal mobile device or computer. Retention rates were 79% for intervention patients, 57% for intervention caregivers, and 60% for control participants. Only 4.6% of survey subscales were missing, aided by robust technical support. Intervention patients reported improved social functioning (SF-36: 64.6 ± 25.8 to 73.2 ± 31.3) compared to controls (64.6 ± 27.1 to 67.5 ± 24.4). Intervention caregivers also reported increased positive perceptions of caregiving (29.5 ± 5.28 to 35.0 ± 5.35) versus control caregivers (29.4 ± 8.7 to 28.0 ± 4.4). Waitlist control participants who later joined the Convoy-Pal program showed similar improvements. The intervention was well-rated for acceptability, especially regarding the information provided (3.96 ±.57 out of 5). Conclusions: Recruiting informal caregivers proved challenging. Nonetheless, Convoy-Pal retained patients and collected meaningful self-reported outcomes, showing potential benefits for both patients and caregivers. Given the importance of a patient and caregiver approach in palliative care, further research is needed to design digital tools that cater to multiple simultaneous users. Trial registration: ClinicalTrials.gov Identifier NCT04779931. Date of registration: March 3, 2021. [ABSTRACT FROM AUTHOR]

Aim: Caregivers in home care settings may experience significant physical, emotional, and financial burdens in providing toileting assistance. However, few studies have evaluated these three aspects of caregiver burden. Therefore, this study aimed to clarify the physical, emotional, and financial burdens of toileting assistance and examine the factors associated with each burden. Methods: A self‐administered postal questionnaire was distributed to 405 family caregivers of older adults receiving home care and subsidies for incontinence products in Japan in 2019. Family caregivers answered questions about toileting assistance, the perceived physical, emotional, and financial burdens of providing toileting assistance at home, and the urinary/fecal symptoms of older adults. Results: Of the 242 family caregivers who reported each burden, 213 (88%) had experienced at least one physical, emotional, or financial burden. The prevalence of physical, emotional, and financial burdens was 77.3%, 78.1%, and 70.7%, respectively. Approximately 60% of respondents reported experiencing all three burdens. Physical burden was associated with spouses acting as primary caregivers, nocturia, fecal incontinence, and the odor of urine/feces from toileting assistance. Emotional burden was associated with nighttime assistance, urinary/fecal leakage from absorbent incontinence products, and the odor of urine/feces. Financial burden was associated with frequent assistance, disposal costs of absorbent incontinence products, and the degree of toileting assistance. Conclusions: The results revealed a high prevalence of the three burdens of toileting assistance among family caregivers, suggesting the need to assess these burdens. Furthermore, they suggested the importance of providing guidance to family members, which may help reduce these burdens. [ABSTRACT FROM AUTHOR]

Aim: A young child's abnormal birth weight (BW) can affect a mother's misperceptions of her child's weight, potentially hindering the child's health management. Therefore, this study investigated the impact of children's BW on maternal misperceptions of children's weight during early childhood. Methods: A retrospective study was conducted for 485,095 children who were 54–60 months of age, born between 2011 and 2013, and participated in South Korea's Sixth National Health Screening Program for Infants and Children (NHSPIC). Data on BW, weight, sex, birth year, preterm birth, breastfeeding history, maternal age, mothers' perceptions of the child's weight, and socioeconomic status were collected and incorporated in the final analysis via data linkage between the NHSPIC and Korean healthcare claims information. Multiple logistic regression analysis was applied to identity the impact of BW on mothers' misperceptions of children's weight, after adjustment for all variables. Results: Low BW (LBW) children had the lowest proportion (57.1%) of mothers who accurately identified their child's weight compared to normal or high BW. LBW was an independent factor affected maternal misperception of the child's weight (underestimation: adjusted odds ratio [aOR]: 1.46, 95% confidence interval [CI]: 1.41–1.52; overestimation: aOR: 0.84, 95% CI: 0.73–0.97). Overweight or underweight status, male gender, preterm birth, a younger mother, and low socioeconomic status were also associated with both underestimation and overestimation. Conclusion: LBW emerged as an important risk factor for maternal misperception of a child's weight. Therefore, pediatric nurses need to apply interventions to improve perceptions of children's weight among mothers of young LBW children. [ABSTRACT FROM AUTHOR]

Aim: The inquiry explored immigrant informal caregivers' experiences and perceptions about engaging with professional services in the host country. Background: The number of informal caregivers is rising, with more people providing home caring. Nurses and other health services are crucial in supporting informal caregivers. Research needs to focus more on immigrants, not just other caregivers. Design: This was a scoping review. Data Sources: Five databases (January 2017–December 2022) were searched, and 16 articles were included in this inquiry. Review Methods: This scoping review used the Joanna Briggs Institute Scoping Review methodology. This inquiry asked one question: What is the current knowledge about immigrant informal caregivers' experiences and perceptions when engaging mainstream professional services? Themes were identified using a thematic analysis approach. Results: Three themes emerged from the review: 'finding cultural bridges: culturally connecting with services'; 'building cultural bridges: addressing "them and us" and "acculturation‐sensitive services"'. Conclusion: Professional service providers are currently not meeting immigrant caregivers' needs. New knowledge is presented, that nurses and health professional services must provide acculturation‐sensitive care, commencing with an assessment of the individual's acculturation status. By understanding acculturation status, nurses are more likely to customize person‐centred care. Acculturation status refers to the degree that the individual has adapted to the new culture while retaining some traditional cultural beliefs and practices. Acculturation‐sensitive care is more likely to provide authentic holistic care that optimizes well‐being. Summary statement: What is already known about this topic? Nurses and other health services are crucial in engaging and supporting informal caregivers when providing person‐centred care.The number of informal caregivers is rising due to ageing individuals, and more care was provided at home during the COVID‐19 pandemic. What this paper adds? The cultural background of informal caregivers and their care recipients influences their service use in the new country, as does education and financial resources.Immigrant caregivers questioned the appropriateness of professional services to meet their cultural needs.Cultural needs can be met through acculturation‐sensitive nursing; a new proposed approach that assesses the cultural status of individuals in order to determine appropriate culturally and religiously sensitive person‐centred care. The implications of this paper: As yet, nurses and other health professional services are not providing acceptable, culturally and religiously sensitive care that meets the needs of immigrant informal caregivers; urgent education and professional development are required about acculturation‐sensitive care.All professional services, particularly nurses, should assess acculturation status and be well placed to support caregivers, such as navigating health systems, while adapting to a new country and culture occurs.Professional services, particularly nurses, need to advocate for immigrant informal caregivers by connecting with ethnic groups to provide comprehensive education to enhance awareness of support needs for families with chronic conditions. [ABSTRACT FROM AUTHOR]

Aim: To investigate the effects of dyadic intervention on anxiety, depression, care burden and quality of life in informal caregivers of palliative patients with lung cancer. Background: Informal caregivers of palliative lung cancer patients bear a large number of negative emotions during the process of caring for the patients. Dyadic intervention has the potential for improving them but the overall effect is unclear. Design: A systematic review and meta‐analysis. Data sources All randomized controlled trials were retrieved from the following databases until 4 May 2023: Web of Science, Embase Ovid, PubMed, Cochrane Central Register of Randomized Controlled Trials, Weipu, Wanfang and Chinese National Knowledge Infrastructure databases. Review methods: This review was performed by Stata 12.0 and Review Manager 5.3. Results: Thirteen randomized controlled trials were in accordance with the inclusion and exclusion criteria (n = 1807). The results revealed that dyadic intervention significantly improved family caregivers' anxiety, depression and caregiver burden of palliative patients with lung cancer. There was no significant difference in quality of life between the dyadic intervention group and family caregivers who did not receive the dyadic intervention. Conclusions: Dyadic intervention positively impacts the experience of family caregivers of palliative patients with lung cancer. Summary statement: What is already known about the topic? Informal caregivers of palliative lung cancer patients bear a large number of negative emotions during the process of caring for the patients.The overall effect of dyadic intervention for informal caregivers of palliative patients with lung cancer is unclear on account of different results reported in existing studies. What this paper adds? Dyadic intervention could improve family caregivers' anxiety, depression and caregiver burden of palliative patients with lung cancer, even though it did not improve quality of life.Dyadic intervention positively impacts the experience of family caregivers of palliative patients with lung cancer. The implications of this paper: Medical personnel can provide personalized dyadic interventions based on the assessment of the palliative patient and their informal caregivers, such as providing illness understanding, symptom management and addressing psychosocial.Findings can be applied as a reference to help informal caregivers prevent potential emotional disturbance. [ABSTRACT FROM AUTHOR]

Patients receiving early palliative care experience improved quality of life, may live longer, and may have earlier referrals to hospice. Caregivers with loved ones receiving early palliative care experience improved communication, decreased risk of caregiver burnout, and improved bereavement adjustment. Studies have shown that patients who received palliative care at diagnosis lived 2.5 months longer than those who did not; patients who received aggressive resuscitation or intensive care admission near the end of life had worse quality of life; and caregivers were three times more likely to develop depression following patient death for those who did not receive early palliative care. [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]

Caregivers play a critical role in supporting youth experiencing persisting symptoms after concussion (PSAC). However, there are limited empirically validated interventions tailored to the specific needs of caregivers, such as improving concussion knowledge and supporting psychosocial wellbeing. This study aims to describe the development of a virtual group intervention for caregivers of youth experiencing PSAC, Move&Connect-Caregivers (M&C-C), and examine its feasibility. Nine mothers participated across two M&C-C groups. Feasibility metrics and semi-structured interviews were collected and analyzed using descriptive and qualitative content analysis. Results suggest that M&C-C is a feasible intervention. By merging social support, concussion psychoeducation, and active skill building, M&C-C is meaningful for caregivers supporting their children experiencing PSAC. [ABSTRACT FROM AUTHOR]

Despite the incredible challenges of caring for a family member with Alzheimer's disease or a related dementia, many dementia family caregivers exhibit resilience. Framed by the communication theory of resilience, this study examines how resilience processes unfold within dementia caregivers' relationships with their family member, and dementia caregivers' experiences of resilience. Analysis of 27 interviews with adult children and spousal caregivers revealed acknowledging dementia as an actor in the relationship as a central facilitating mechanism that enabled caregivers to enact other communicative resilience processes within their relationship. Resilience processes were enacted through shifting blame to dementia, accommodating dementia, and relying on memories. Caregivers experienced resilience through personal growth, enhanced relational closeness, and ambivalent resilience. We discuss implications for dementia caregiver resilience and forward facilitating mechanisms as an extension of communication resilience theorizing. [ABSTRACT FROM AUTHOR]

We aimed to analyze the effects of exclusive breastfeeding duration on the occurrence and course of pneumonia in infants aged up to 6 months. Prospective case-control study. This study was conducted from August 2020 to August 2022 at a maternity and child health hospital in China. A total of 218 infants up to 6 months of age with pneumonia were included in the analyses. Health data were obtained using a hospitalization information system or an interview-based questionnaire. Univariate and multivariate logistic regression analyses were performed to analyze the data. The incidence of pneumonia, hospitalization duration, and costs to participants were significantly affected by the duration of exclusive breastfeeding (p < 0.01). The incidence of pneumonia among participants with different exclusive breastfeeding durations also differed significantly (p < 0.01). The shorter the duration of exclusive breastfeeding, the higher the incidence of pneumonia among infants. We found that the longer the exclusive breastfeeding duration in infants up to 6 months of age, the lower the recurrence of pneumonia, the shorter the hospital stay, and the lower the hospital costs. The rate of exclusive breastfeeding for infants up to 6 months of age should be increased as much as possible to reduce the occurrence of pneumonia and hospital costs. [ABSTRACT FROM AUTHOR]

Background: Persons living with dementia and informal caregivers are at a higher risk for malnutrition. Most caregivers are not experts at identifying nutritional complications of dementia. Therefore, we aimed to identify nutrition knowledge and challenges related to feeding and caring for persons with dementia to develop a meaningful intervention. Methods: A mixed‐methods approach was used. Eight focus groups were conducted with caregivers of persons living with dementia (n = 28) and healthcare professionals (n = 23). Data was analysed using NVivo software. A questionnaire was administered to identify nutritional challenges. A modified food frequency questionnaire assessed food patterns of caregivers and persons with dementia. Results were compared to Mediterranean‐DASH Intervention for Neurodegenerative Delay (MIND) dietary guidelines. Data were analysed using SPSS software. Results: Four major themes emerged: forgetting to eat, developing food aversions, strong preferences for sweets and weight changes. Findings revealed common strategies used to improve nutrition intake included cueing, supplements and quiet eating environment. Caregivers were impacted by stress leading to poorer food choices and exhaustion. Recommendations for a caregiver program made by participants included education, resources and support. Findings from the food frequencies questionnaire survey showed most participants had a lower dietary diversity compared to the MIND diet guidelines. Conclusions: With both groups being more prone to malnutrition, this research shows that participants were less likely to obtain adequate nutrition for brain health. Additionally, caregivers are dealing with nutrition issues themselves and their person living with dementia. The findings support the need for registered dietitians to provide tailored nutrition interventions for these families. Highlights: Caregivers for individuals living with dementia are stressed and exhausted leading to poorer food choices and low diet quality.Most persons living with dementia and their caregivers fell short on food choices in the Mediterranean‐DASH Intervention for Neurodegenerative Delay (MIND) diet recommendations.Caregivers want a program that includes support, resources, and nutrition education. [ABSTRACT FROM AUTHOR]

Background: Augmentative and Alternative Communication (AAC) serves as a compensatory intervention approach for individuals with aphasia and is often introduced by speech-language pathologists (SLPs) after outcomes from restorative approaches plateau. Communication partners (i.e., caregivers) have a pivotal role in ensuring the successful use of AAC by adults with aphasia. Despite there being a large body of research on the use of AAC by adults with aphasia little is known about the experience of caregivers of individuals with aphasia who use AAC in supporting its use. Aims: This study conducted in Malaysia was aimed to (a) explore the practices of Malaysian SLPs when introducing AAC to adults with acquired communication disorders (ACD) including aphasia and (b) describe the experience of caregivers regarding the use of AAC by adults with aphasia under their care. Method & Procedures: This mixed-methods study had two phases. In Phase 1, a survey was distributed to 200 SLPs throughout Malaysia. Thirty-seven SLPs who met the inclusion criteria of having a caseload of more than 80% adults and at least 20% adults with aphasia responded to the survey and provided information about their use of AAC. For Phase 2, eight caregivers of adults with aphasia who had been introduced to AAC were interviewed to obtain information about their experience using AAC. Outcomes & Results: Findings from Phase 1 indicated that Malaysian SLPs most often introduced unaided and low-tech AAC to adults with ACD (including aphasia). Most of them felt that they lacked knowledge and skills in the provision of AAC services to adults and hoped for more training. Three themes emerged from the qualitative content analysis conducted on interview transcripts from Phase 2: (a) the positive impact of the use of AAC, (b) challenges faced when using AAC, and (c) hopes for the future. The findings of this study suggest that both SLPs and caregivers recognize the importance of AAC for adults with ACD including aphasia and need to work together closely to promote inclusion of adults with aphasia who use AAC and acceptance of AAC as a form of aphasia rehabilitation. [ABSTRACT FROM AUTHOR]

Child-to-parent violence and abuse (CPVA) is a pattern of behavior where a parent or carer is abused by a child they are caring for. The main body of work on CPVA is relatively recent and evolving at pace. This scoping review explores the characteristics of parents, carers, children, and young people in cases of CPVA, the characteristics of CPVA, and barriers to and facilitators of help-seeking in cases of CPVA. The scoping review did not exclude any studies on the basis of geographical location or date of the study. The databases Scopus, CINAHL, Web of Science, Medline, and PubMed were searched in August 2023, along with hand searches of key journals. A total of 145 reports were included in the review, selected for their relevance to the scoping review questions. The main findings were: (a) the field of CPVA is rapidly growing, doubling in the last decade but with a predominance of quantitative studies; (b) there is no agreed universal definition; (c) children and young people with disabilities; who identify as trans or nonbinary gender, or who are adopted or fostered, are almost completely absent from the existing research; (d) there is very limited research focusing on protective factors or on help-seeking. [ABSTRACT FROM AUTHOR]

The impact of caregiving on caregivers' mental health is typically considered within the caregiver stress and burden literature; however, more recently, research has investigated the experience of post-traumatic stress symptoms (PTSS) in caregivers. As an emerging area of research, it is timely to conduct a scoping review to map the existing literature in relation to PTSS among adult caregivers of children and adults with neurodevelopmental disorders (NDD), neurocognitive disorders, and psychiatric disorders. The scoping review was conducted using Preferred Reporting Items of Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines and Arksey and O'Malley's five-stage methodology framework. Published and unpublished gray literature between 2005 and 2022 was included in the scoping review. Nine thousand one hundred and twenty-five studies were originally identified for screening and 22 studies were selected for inclusion in the final review. Trauma and PTSS experienced by NDD caregivers were related to news breaking, NDD diagnosis, and behavioral issues, whereas caregivers of individuals with psychosis reported aggression and violence as traumatic events. Studies showed that up to half of caregivers reported PTSS, although no conclusions could be drawn about prevalence rates. A wide variety of tools measuring PTSS were used across the 22 studies. Many symptoms of PTSS were reported by caregivers, and cognitive appraisals were associated with PTSS in caregivers. The findings highlight the importance of recognizing the impact of trauma in caregiver mental health and the potential value of using traumatic stress frameworks with these populations. Research should be expanded to establish prevalence rates and to examine the long-term impact of trauma on caregiving as caregivers and care recipients age. [ABSTRACT FROM AUTHOR]

Ninety-one percent of surviving spouses in the U.S. cared for their spouses before they died. This review explores the challenges of the transition from caregiving to widowhood and different coping strategies used by widowed spousal caregivers. A systematic review of literature on the transition from caregiving to widowhood was conducted using four major academic search engines. Overall, 280 articles were identified, with 22 meeting the inclusion criteria. Challenges for widowed caregivers included experiencing care burden, letting go of the caregiver role, grief, and triggers. Widowed caregivers' coping strategies included social support and services use, filling the time gap, finding spirituality, and engaging in unhealthy behaviors. Future research is needed to determine the efficacy of widowed caregivers' coping strategies. Concerted and collaborative action by health professionals, community organizations, and policymakers is needed to develop programs and other approaches to support widowed caregivers. [ABSTRACT FROM AUTHOR]

Growing care dependencies among the elderly due to population ageing in Europe challenge the labour-market participation of informal caregivers. While familiarized care regimes incentivize family caregiving by providing many cash-for-care-benefits, resulting in reduced labour supply, defamiliarized care regimes allocate more public spending to care infrastructure, alleviating the care responsibilities placed on family members. At the same time, care provision on the micro-level is distributed unequally across gender, age, and socioeconomic status. The question then emerges: Does the labour-market participation of informal caregivers vary between and within countries depending on the social-expenditure policy of welfare states? To answer this research question, a multilevel design was used, employing SHARE data and macro-indicators from OECD and Eurostat databases. The results reveal higher probabilities of labour-market participation for informal caregivers in general when social expenditures on formal care infrastructure are higher. However, labour-market participation was observed as being unequally distributed among the heterogeneous group of persons with and without caregiving duties. Women and individuals of lower socioeconomic status did not benefit from social expenditures in the same way as their counterparts, leading to lower levels of labour-market participation. [ABSTRACT FROM AUTHOR]

Background: Family carers of people living with comorbid dementia and cancer (CDC) play a vital supportive role, but this may be particularly burdensome and adversely impact their own health and wellbeing. Objective: To examine the experiences and psychosocial support needs of caregivers of people with CDC. Methods: A flyer advertising the study was distributed to relevant UK voluntary sector organisations and shared across social media. 13 carers of people with CDC were recruited. In-depth semi-structured interviews were conducted and transcripts were analysed using reflexive thematic analysis, underpinned by an inductive phenomenological approach. Results: Complex interactions of dementia and cancer resulted in heightened responsibility for carers, who played a crucial role in recognition/management of symptoms, performing difficult cancer-related care, and treatment decision-making that posed difficult ethical challenges. Care-recipients had reduced insight into their cancer diagnosis and prognosis, so carers often carried the emotional burden alone. Responsibilities faced by carers were compounded by a lack of targeted, accessible information/support for CDC. Carers expressed a desire to talk to and learn from others who understand the unique challenges of navigating cancer-related decision-making, treatment and care for people who are also living with dementia. Conclusions: Cancer alongside dementia presents complex challenges for carers, who desire more cancer-related information and support which is tailored to people living with dementia and their family caregivers. [ABSTRACT FROM AUTHOR]

Background: Little is known about patients' or carers' reported experiences of dental care provided using dental behaviour support (DBS) techniques. Qualitative literature can provide unique insight into these experiences. Aim: To explore and synthesize qualitative literature related to patient experience of dental behaviour support. Methods: A PROSPERO‐registered systematic review of qualitative articles was undertaken. Studies were identified through MEDLINE, Embase and PsycINFO. Abstracts were screened by two reviewers and data were extracted to summarize the qualitative findings included within them. A thematic summary approach was used to synthesize the qualitative data identified. Results: Twenty‐three studies were included. Studies primarily explored experiences of dental care of children by speaking to their parents (n = 16), particularly regarding paediatric dental general anaesthesia (DGA) (n = 8). Studies of adults' experiences of DBS (n = 7) covered a range of techniques. Nine studies explored broader dental care experiences and did not study specific DBS approaches. A thematic synthesis identified five themes applicable across the studies identified: Trust and the therapeutic alliance supporting effective care delivery; considered information sharing often alleviated anticipatory anxiety; control and autonomy‐reduced anxieties; variations in the perceived treatment successes and failures of DBS techniques; and DBS techniques produced longer positive and negative impacts on patients beyond direct care provision. Conclusion: Qualitative research has been under‐utilized in research on DBS techniques. Care experiences of most DBS techniques outside of paediatric DGA are poorly understood. Building trust with patients and enabling autonomy appear to support positive patient‐reported experiences of care. [ABSTRACT FROM AUTHOR]

Caregiving in the South Asian context is often assumed by family automatically for the person with cancer (PWC). In this paper, we applied the disclosure decision-making model (DD-MM) to understand the motives behind cancer prognosis disclosure (or not) by caregivers to the PWC. Fifty caregivers participated in semi-structured interviews; and data were analyzed using Framework Approach. For the disclosing caregivers, some of the themes that emerged were consistent with the DD-MM framework while others were not. In particular, the theme "recipient assessment" was part of the DD-MM framework, while others such as unmet communication needs, caregiver self-reflection, and family support were outside of the framework. In contrast, for the non-disclosing caregivers, the reasons for nondisclosure fit very concisely into the DD-MM framework, particularly with information assessment, recipient assessment, and (non) disclosure efficacy. This study has significant implications for development of communication skills trainings around holding family meetings in India. [ABSTRACT FROM AUTHOR]

Cystinosis is a rare autosomal-recessive lysosomal storage disease that progressively affects multiple organs beginning with the kidneys. Patients require lifelong multidisciplinary care for the management of kidney disease and progressive extra-renal manifestations, and thus, they are especially fragile and vulnerable during transition from pediatric to adult care. Previous documents have provided guidance to help the medical transition of these highly burdened patients. Patients and their families often experience great psychological distress and face significant social challenges; for these reasons, they often need help from psychologists, social workers, and other psychosocial professionals. Due to the rarity of the disease, most psychosocial professionals have no expertise in this disorder and require advice. To this end, a steering committee (SC) composed of six experts, including pediatric nephrologists, psychologists, and social workers with experience in the care for patients with cystinosis, have identified and addressed seven key questions related to psychosocial challenges of the disease and the burden of treatment. Ten additional international experts (the extended faculty, EF) were invited to answer these questions. Since robust evidence is lacking, as in many rare diseases, conclusions were based on collective agreement between members of the SC and the EF, and the consolidated answers were summarized into expert opinion statements. The present document contains information on the concerns and psychosocial burden of patients with cystinosis and of their caregivers, and provides practical advice for timely and appropriate support to facilitate the transition to adult care. [ABSTRACT FROM AUTHOR]

Background: Caregivers of children with chronic kidney disease (CKD) in low resource settings must provide complex medical care at home while being burdened by treatment costs often paid out-of-pocket. We hypothesize that caregiver burden in our low resource setting is greater than reported from high income countries and is associated with frequent catastrophic healthcare expenditure (CHE). Methods: We conducted a mixed-methods study of primary caregivers of children with advanced CKD (stage 3b–5) in our private-sector referral hospital in a low resource setting. We assessed caregiver burden using the Pediatric Renal Caregiver Burden Scale (PRCBS) and measured financial burden by calculating the proportion of caregivers who experienced CHE (monthly out-of-pocket healthcare expenditure exceeding 10% of total household monthly expenditure). We performed a qualitative reflexive thematic analysis of caregiver interviews to explore sources of burden. Results: Of the 45 caregivers included, 35 (78%) had children on maintenance dialysis (25 PD, 10 HD). Mean caregiver burden score was 141 (± 17), greater than previously reported. On comparative analysis, PRCBS scores were higher among caregivers of children with kidney failure (p = 0.005), recent hospitalization (p = 0.03), non-earning caregivers (p = 0.02), caring for > 2 dependents (p = 0.009), and with high medical expenditure (p = 0.006). CHE occurred in 43 (96%) caregivers of whom 37 (82%) paid out-of-pocket. The main themes derived relating to caregiver burden were severe financial burden, mental stress and isolation, and perpetual burden of concern. Conclusion: Parents of children with CKD experienced severe caregiver burden with frequent CHE and relentless financial stress indicating an imminent need for social support interventions. [ABSTRACT FROM AUTHOR]