The mediation role of hope in the relationship of resilience with depression, anxiety, and stress in caregivers of children and adolescents with cancer.

This study aimed to determine the mediation role of hope in the relationship of resilience with depression, anxiety, and stress in caregivers of children and adolescents with cancer. This cross-sectional study was conducted on 200 caregivers of children and adolescents with cancer. Adult Hope Scale, Connor-Davidson Resilience Scale, and Depression, Anxiety and Stress (DAS) scales were used for data collection. The mediator and moderator model was tested using the SPSS macro PROCESS (Model 4, and 5). The mediator model (model 4) indicated that DAS significantly correlated with resilience (ß = - 0.54, t-value = - 5.01, p < 0.001), and hope (ß = - 0.84, t-value = - 3.45, p = 0.0007). Hope mediated the relationship between resilience and DAS among caregivers of children and adolescents with cancer (Effect = - 0.18, SE = 0.06, 95% CI - 0.33 to - 0.06). The mediator and moderator model (model 5) showed that female caregivers had a stronger correlation between resilience and DAS when compared to their male counterparts (ß = - 0.56, t-value = - 3.90, p-value = 0.0001); also, hope mediated the relationship between resilience and DAS among caregivers of children and adolescents with cancer (Effect = - 0.20, SE = 0.08, 95% CI - 0.37 to - 0.04). In conclusion, hope was a mediator, and female caregivers were a moderator in the relationship of resilience with depression, anxiety, and stress, and its promotion might be effective among caregivers of children and adolescents with cancer. It seems that resilience, female caregivers, and hope may provide good protection against depression, anxiety, and stress in caregivers of cancer patients.

Familiarity of evidence based practices in Chinese caregivers of autistic children.

Although researchers have investigated special educators' and clinicians' knowledge and use of evidence-based practices (EBPs), there is very little research on caregivers' perception of the importance of EBPs for their autistic children. Moreover, there is even less research on how EBPs have been translated or disseminated in international communities not within the English-speaking, Western population. In order to provide appropriate support for caregivers of autistic children in all communities, we need more information to identify possible barriers that may affect caregiver involvement. We used a survey to ask 81 Chinese caregivers of autistic children in Guangzhou, China to investigate their familiarity with EBPs for autistic individuals and any external sources used inform their decision about treatment options for their autistic child. Results showed that 58.6% of the participants had no knowledge of what an EBP was and an additional 29.7% of the participants had heard of EBPs but not sure what they were. These results amplify the need for increased dispersion of ASD intervention knowledge to global communities and how to increase caregiver knowledge on treatment options for their autistic child.

Latent profile analysis of benefit finding among family caregivers of Chinese older adults with disabilities and its influencing factors.

OBJECTIVES: The increase in the number of older adults with disability creates new challenges for caregivers. Benefit finding is the positive experience that caregivers get from caregiving, helping to reduce the negative impact on the caregiver's quality of life. However, there is less research on the positive experiences of family caregivers of older adults with disabilities. This study aimed to identify different benefit finding profiles among family caregivers of older adults with disabilities in China and to explore the sociodemographic characteristics and psychosocial factors with different benefit finding profiles. METHODS: A cross-sectional study of 218 family caregivers of Chinese older adults with disabilities using the sociodemographic questionnaire, the Family-APGAR, the Sense of Coherence-13, the Emotion Regulation Scale and Benefit Finding Scale from October 2022 to June 2023 in communities and hospitals of China, Shenyang, Liaoning Province. Latent profile analysis was used to analyze the latent profiles of benefit finding among family caregivers of Chinese older adults with disability. Multiple logistic regression was used to explore the predictors of different profiles. RESULTS: The benefit finding among family caregivers of Chinese older adults with disability can be classified into three potential profiles: Profile 1 - high-level benefit finding group (12.84%), Profile 2 - medium-level benefit finding group (43.58%), Profile 3 - low-level benefit finding group (43.58%). Working status, family function, and cognitive reappraisal of caregiver were predictors of different profiles. CONCLUSIONS: Nurses and community health care staffs should pay attention to the characteristics, family function, and emotion regulation strategies of family caregivers of older adults with different disability. Help family caregivers enhance family cohesion and cognitive reappraisal to improve positive experiences for caregivers in different profiles.

Caregiver burden and risk of epithelial ovarian cancer in the Nurses' Health Studies.

Psychosocial stress may increase ovarian cancer risk and accelerate disease progression. We examined the association between caregiver burden, a common stressor, and risk of epithelial ovarian cancer. We prospectively followed 67,724 women in the Nurses' Health Study (NHS; 1992-2012) and 70,720 women in the NHSII (2001-2009) who answered questions on informal caregiving (i.e., caregiving outside of work). Women who reported no informal caregiving were considered non-caregivers while, among women who provided care outside of work, caregiver burden was categorized by time spent caregiving and perceived stress from caregiving. For the 34% of women who provided informal care for ≥15 hours per week, 42% described caregiving as moderately to extremely stressful. Pooled multivariate analyses indicated no difference in ovarian cancer risk for women providing ≥15 hours of care per week compared to non-caregivers (hazard ratio (HR)=0.96; 95% confidence interval (CI): 0.79-1.18), and no association was evident for women who reported moderate or extreme stress from caregiving compared to non-caregivers (HR=0.96; 95% CI: 0.75-1.22). Together with prior work evaluating job strain and ovarian cancer risk, our findings suggest that, when evaluating a stressor's role in cancer risk, it is critical to consider how the stressor contributes to the overall experience of distress.

Prevalence and Risk Factors of Pressure Ulcers in Bedbound Diabetic vs. Non-diabetic Patients in a Lower-Middle-Income Country.

Introduction Pressure ulcers, also known as bedsores, are a significant concern for bedridden individuals, presenting both physical and socioeconomic challenges. Factors such as prolonged immobility, chronic medical conditions, and poor nutrition contribute to their development. Despite extensive research in some regions, studies comparing diabetic and non-diabetic populations remain limited, particularly in low-income settings. This study aimed to investigate the risk factors and frequency of pressure ulcers among bedridden patients, addressing this gap in understanding and guiding targeted interventions. Materials and methods A cross-sectional study was conducted across four government hospitals in Peshawar, Pakistan. A total of 388 bedridden patients with pressure ulcers were included, and data were collected through a questionnaire. The questionnaire covered demographics, comorbidities, duration of bedbound status, BMI, and caregivers' awareness of pressure ulcer care. Data analysis was performed using SPSS version 22.0 (Armonk, NY: IBM Corp.), with qualitative data presented as frequencies and percentages and quantitative data as mean and standard deviation. Chi-square tests were utilized for significance, with p<0.05 considered significant. Results Of the 388 patients analyzed, 230 (59.3%) were diabetic, highlighting the prevalence of diabetes among pressure ulcer cases. The majority of diabetic patients with ulcers were over 41 years old, and 293 (75.5%) had comorbidities. Surgical intervention was the primary cause of ulcers in 213 (54.8%) cases, followed by stroke in 77 (19.8%) cases. Notably, 252 (65%) of caregivers exhibited inadequate knowledge regarding ulcer care. Stage II ulcers were prevalent in both diabetic and non-diabetic cohorts. Conclusions Pressure ulcers are poorly controlled complications observed in bedridden individuals, highlighting a critical need for comprehensive preventive measures and caregiver education to alleviate the burden of pressure ulcers, especially in diabetic patients. Factors such as prolonged immobility, surgical interventions, and insufficient caregiver knowledge contribute to the development of pressure ulcers. Understanding these complexities is essential for implementing effective care approaches and mitigating the impact of pressure ulcers.

DigiTRAC: Qualitative insights from knowledge users to inform the development of a Digital Toolkit for enhancing resilience among multiple sclerosis caregivers.

BACKGROUND: Resilience-promoting resources are critically needed to support positive caregiving experiences for multiple sclerosis (MS) caregivers. A digital toolkit offers a flexible way to access and use evidence-based resources that align with MS caregivers' interests and needs over time. OBJECTIVE: We explored the perspectives of key knowledge users regarding content areas, features, and other considerations to inform an MS caregiver resilience digital toolkit. METHODS: Twenty-two individuals completed a demographic survey as part of this study: 11 MS family caregivers, 7 representatives of organizations providing support services for people with MS and/or caregivers, and 4 clinicians. We conducted nine semi-structured individual interviews and two focus groups. Data were analyzed using content analysis. RESULTS: Participants recommended that a digital toolkit should include content focused on promoting MS caregivers' understanding of the disease, its trajectory and available management options, and enhancing caregiving skills and caregivers' ability to initiate and maintain behaviours to promote their own well-being. Features that allow for tracking and documenting care recipients' and caregivers' experiences, customization of engagement, and connectivity with other sources of support were also recommended. Participants suggested a digital toolkit should be delivered through an app with web browser capabilities accessible on smartphones, tablets, or laptops. They also acknowledged the need to consider how users' previous technology experiences and issues related to accessibility, usability, privacy and security could influence toolkit usage. CONCLUSION: These findings will guide future toolkit development and evaluation. More broadly, this study joins the chorus of voices calling for critical attention to the well-being of MS family caregivers.

Determination of the family caregivers'level of knowledge on pressure injury prevention.

OBJECTIVE: The purpose of this study is to determine family caregivers' level of knowledge on pressure injury (PI) prevention. METHODS: This study used a cross-sectional and descriptive design. Data were collected between February and May 2023. The population of the study consisted of family caregivers providing care to patients who were at risk of developing pressure injuries and who were planned to be discharged from the inpatient wards of the hospital. A total of 105 family caregivers participated in the study. RESULTS: Of all the patients, 61.9 % (n = 65) were female and their average age was 68.96 years (SD = 18.07). While 30.48 % (n = 32) of the patients were bedridden due to Cerebrovascular Accident, 28.57 % (n = 30) were bedridden due to old age, and 28.57 % (n = 30) had PI. Of all the caregivers, 71.43 % (n = 75) were female, and their average age was 47.11 years (SD = 14.85). While 97.14 % (n = 96) of the caregivers had not received any training on PI before, 90.48 % (n = 95) had not provided care to a patient with PI before. Family caregivers scored an average of 22.25 (SD = 6.96) points out of 40 on the Pressure Injury Prevention Knowledge Test (PIPKT). A significant difference was detected between the knowledge test scores and education level and income level (P = 0.006; P = 0.002). CONCLUSIONS: Family caregivers were found to need information about PI prevention. It is recommended to develop content on PI prevention in the guidelines for family caregivers.

Effects of telehealth interventions on the caregiver burden and mental health for caregivers of people with dementia: a systematic review and meta-analysis.

OBJECTIVES: To systematically evaluate the effects of telehealth interventions on the caregiver burden and mental health of caregivers for people with dementia (PWD). METHOD: Relevant randomized controlled trials (RCTs) of telehealth interventions on caregivers were extracted from nine electronic databases (PubMed, The Cochrane Library, Web of Science, Embase, CINAHL, SinoMed, CNKI, WanFang, and VIP). The retrieval time was from inception to 26 July 2023. RESULTS: Twenty-two articles with 2132 subjects were included in the final analysis. The meta-analysis demonstrated that telehealth interventions exerted a significant effect in reducing caregiver burden (SMD: -0.14, 95 % CI: -0.25, -0.02, p = 0.02), depression (SMD = -0.17; 95%CI: -0.27, -0.07, p < 0.001) and stress (SMD = -0.20, 95%CI: -0.37, -0.04, p = 0.01). However, no statistically significant effect was observed on anxiety (SMD = -0.12, 95%CI: -0.27, 0.03, p = 0.12). Moreover, subgroup analysis showed that tailored interventions were associated with more evident reductions in depression (SMD = -0.26; 95%CI: -0.40, -0.13, p < 0.001) than standardized interventions (SMD = -0.08; 95%CI: -0.22, 0.06, p = 0.25). In addition, telehealth was effective in relieving depression in Internet-based (SMD = -0.17, 95%CI: -0.30, -0.03, p = 0.01) and Telephone-based group (SMD = -0.18, 95%CI: -0.34, -0.02, p = 0.03), while there was no significant difference in the Internet and Telephone-based group (SMD = -0.18, 95%CI: -0.54, 0.18, p = 0.32). CONCLUSION: Telehealth could effectively reduce the burden and relieve the depression and stress of caregivers of PWD, while its effect on anxiety requires further research. Overall, telehealth has potential benefits in dementia care.

Development and validation of a health literacy scale for family caregivers of older people with chronic illness.

BACKGROUND: Family caregivers (FCs) encounter a variety of health problems in older people with chronic illness, necessitating a certain level of health literacy to access, understand, appraise and apply health information and services. This study aimed to develop and validate a scale for measuring health literacy among FCs of older people with chronic illness. METHODS: Concept mapping was first employed to develop a conceptual model of health literacy of FCs. Scale domains were derived from the conceptual model, and item generation was performed using deductive and inductive methods. Quantitative methods, including merging scale dimensions and items, expert reviews, cognitive interviews, and item reduction analysis, were used to refine the scale. Confirmatory factor analysis was employed to validate the scale's structure. Concurrent validity, internal consistency, and test-retest reliability were also examined. RESULTS: A 20-dimension conceptual model was developed, and 60 items were generated for the scale. Expert review (content validity index > 0.85) and cognitive interview with FCs confirmed the relevance and clarity of the majority of the generated scale items. Confirmatory factor analysis with 451 FCs of older people with chronic illness supported a 5-factor structure (symptom management, daily personal care and household tasks, care coordination, communication and relationship with the care recipient, and self-care of caregivers) with 42 finalized scale items, including four levels of health literacy skills (accessing, understanding, appraising and applying health information). Concurrent validity with the European Health Literacy Questionnaire (HLS-EU-Q47) was satisfactory (r = 0.67, p < 0.01). The Cronbach's α coefficient of the scale was 0.96, with subscales ranging from 0.84 to 0.91. The two-week test-retest reliability was 0.77 (p < 0.01). CONCLUSION: This study developed a conceptual model explaining the concept and factors of health literacy among FCs of older people with chronic illness that could provide the groundwork for future studies in developing relevant evidence-based interventions. A new Health Literacy Scale-Family Caregiver (HLS-FC) with satisfactory psychometric properties was developed in this study, which can be utilized to identify caregivers with insufficient health literacy and facilitate timely interventions by healthcare professionals.

Generic and disease-specific caregiver contribution to self-care in a population with multiple chronic conditions: A comparative study.

AIM: Describe and compare generic and disease-specific caregiver contribution (CC) to self-care behaviours in the dimensions of self-care maintenance, self-care monitoring and self-care management in multiple chronic conditions (MCCs). DESIGN: Multicentre cross-sectional study. METHODS: We enrolled caregivers of patients with MCC, from April 2017 to November 2022, if they were (a) 18 years of age or older and (b) identified by the patient as the principal unpaid informal caregiver. The Caregiver Contribution to Self-Care of Chronic Illness Inventory, Caregiver Contribution to Self-Care of Heart Failure Index, Caregiver Contribution to Self-Care of COPD Inventory and Caregiver Contribution to Self-care of Diabetes Inventory were used to measure generic and disease-specific contribution to patient self-care. Descriptive statistics, Student's t-tests and Pearson's correlation coefficients were used. RESULTS: We found adequate generic CC for self-care monitoring but inadequate CC in self-care maintenance and management. All CC to disease-specific self-care maintenance, monitoring and management scales' scores were inadequate, except for caregivers of diabetic patients in which we observed an adequate score in the CC to self-care maintenance and self-care management scales in those practice insulin therapy. CONCLUSION: Caregivers experience difficulties in performing behaviours of contribution to their patients affected by chronic conditions. Caregivers of patients with MCCs contribute more to self-care in aspects related to provider prescriptions and less to lifestyle changes. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Healthcare professionals have to know in which behaviours caregivers show gaps and reflect on the reasons for poor CC to self-care to develop interventions to enhance these behaviours. IMPACT: This study underlines the importance of choosing the most appropriate instrument for measuring CC to self-care, considering the caregiver's characteristics. REPORTING METHOD: We adhered to STROBE guidelines. PATIENT OR PUBLIC CONTRIBUTION: Caregivers of patients affected by MCCs were enrolled.

Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.

INTRODUCTION: Amyotrophic lateral sclerosis (ALS) is an inevitably fatal condition that leads to a progressive loss of physical functioning, which results in a high psychosocial burden and organizational challenges related to medical care. Multidimensional and multiprofessional care is advised to meet the complex needs of patients and their families. Many healthcare systems, including Germany, may not be able to meet these needs because non-medical services such as psychological support or social counselling are not regularly included in the care of patients with ALS (pwALS). Specialised neuropalliative care is not routinely implemented nor widely available. Caregivers of pwALS are also highly burdened, but there is still a lack of support services for them. METHODS: This project aims to assess the perceptions and satisfaction with ALS care in Germany in pwALS and their caregivers. This will be achieved by means of a cross-sectional, multicentre survey. The examination will assess, to which extend the patients' needs in the six domains of physical, psychological, social, spiritual, practical and informational are being met by current care structures. This assessment will be linked to mental well-being, subjective quality of life, attitudes toward life-sustaining measures and physician-assisted suicide, and caregiver burden. The study aims to recruit 500 participants from nationwide ALS centres in order to draw comprehensive conclusions for Germany. A total of 29 centres, mostly acquired via the clinical and scientific German Network for Motor Neuron Diseases (MND-NET), will take part in the project, 25 of which have already started recruitment. PERSPECTIVE: It is intended to provide data-based starting points on how current practice of care in Germany is perceived pwALS and their caregivers and how it can be improved according to their needs. Planning and initiation of the study has been completed. TRIAL REGISTRATION: The study is registered at ClinicalTrails.gov; NCT06418646.

Caregiver burden and its sociodemographic determinants in family caregivers of patients with schizophrenia attending a psychiatric tertiary hospital in South Africa.

Background: Chronic mental illnesses such as schizophrenia affect patients' functioning, making caregiving necessary although burdensome. Aim: This study aimed to determine caregiver burden and its sociodemographic determinants in family caregivers of patients with schizophrenia attending a Psychiatric Outpatient Department (POD). Setting: Tertiary hospital in Northern Pretoria, South Africa. Methods: In this cross-sectional study conducted over 3 months, 300 consecutive family caregivers who attended the POD were administered a 22-item Zarit Burden Interview (ZBI-22), which has a score of 0-88, with higher values indicating more burden. Their sociodemographic characteristics were ascertained. Linear and ordinal logistic regression analyses were performed to identify determinants or predictors of total and severe burdens, respectively. Results: Most caregivers were aged 46.0 ± 14 years, females (62%), parents (39%), of low-income status (93.7%), had secondary education (70%), resided with the patient (87%), and helped with all troublesome activities (95.3%). The median ZBI-22 score was 19.0 (interquartile range: 13.0-30.5). The determinants of both total and severe burdens were: caregiver age ≥ 50 years adjusted odds ratio (aOR): 2.55, confidence interval (CI): 1.49-4.36; residential area farther away from the hospital aOR: 1.76, CI: 1.3-2.99; increasing months of caregiving aOR: 1.0, CI: 1.001-1.009, p = 0.006; and not having another family member that needs care aOR: 0.43, CI: 0.24-0.78. Conclusion: Having mental healthcare facilities close to residential areas and assisting caregivers aged ≥ 50 years who have multiple family members who need care may alleviate the burden. Contribution: Predicting total and severe caregiver burdens contemporaneously is effective for identifying potential burden interventions.

Effectiveness of psychological interventions for reducing depressive symptomatology and overload and improving quality of life in informal caregivers of non-institutionalized dependent elderly: a systematic review.

Introduction: The phenomenon of aging is distinguished by profound life transformations, with the most dependent group being constituted by elderly individuals. The responsibility for their care primarily falls on the figure of the informal caregiver. The scarcity of time, the stress associated with caregiving, the financial, work-related, and personal difficulties it entails, make it a collective with high probabilities of experiencing various psychological disorders. Interventions that have shown the best results are those of multiple components, composed of various techniques that seek to adapt to the reality of the informal caregiver. Method: The purpose of this study is a systematic review of effective interventions on depressive symptoms, emotional wellbeing, burden, or quality of life in informal caregivers of non-institutionalized dependents from 2018 to the present. A search was conducted in November 2023, on Pubmed, Pubmed Central, Proquest, and Scielo. The final review was conducted on 11 articles. Results: The results indicate that multiple component interventions including cognitive behavioral techniques and psychoeducation in combination with stress coping techniques and social support are more effective on depressive symptoms, burden, quality of life, and increasing the social support network. Discussion: Results on web-based programs demonstrate their efficacy and effectiveness, but require a greater number of trials to adjust their methodological quality and content to the idiosyncrasies of the informal caregiver.

Using a longitudinal qualitative approach to understand the lived experiences of caregivers of infants with obstructive sleep apnea who require chronic noninvasive respiratory support.

OBJECTIVE: Although positive airway pressure (PAP) is effective for treating obstructive sleep apnea (OSA) in infants, there is a lack of data on caregivers' experiences administering PAP at home. Understanding caregivers' perspectives may change health care professionals approach to PAP initiation. Our study aimed to gain comprehensive insight into caregivers' beliefs, perceptions, and challenges associated with implementing PAP for infants with OSA, considering the transition from inpatient hospitalization to home. METHODS: In this single-center prospective longitudinal study, caregivers of infants with OSA less than 12 months old who were initiated PAP during inpatient hospitalization underwent two semi-structured interviews over 3 months. The interview data were analyzed using directed content analysis, utilizing the health belief and socioecological models as theoretical frameworks. Data were coded and clustered into themes that reflected the evolving perspectives and experiences of caregivers. RESULTS: Eight caregivers completed semi-structured interviews, revealing three key themes. First, despite initial negative attitudes towards the equipment, caregivers recognized PAP benefits and through self-efficacy and cues to action, were motivated to use PAP at home. Second, caregivers encountered various barriers to adherence; however, caregivers' self-efficacy improved with time and practice. Lastly, interpersonal, organizational, and community support enhanced adherence while lack thereof hindered implementation. CONCLUSION: Caregivers of infants with OSA understand the importance of PAP therapy. Providing family-centered care and targeted interventions helps caregivers maintain adherence to PAP for infants. By understanding the lived experiences of caregivers, health care professionals can better meet the needs of families and optimize the effectiveness of PAP.

Knowledge sharing in virtual communities of practice of family caregivers of people with Alzheimer's.

INTRODUCTION: Knowledge sharing can only happen in the context of a trusting and supportive environment, such as evolves in communities of practice and their virtual equivalent, virtual communities of practice. The main objective of this study was to understand knowledge sharing between participants in a virtual community of practice of caregivers of people with Alzheimer's. METHODS: The authors designed their own mobile application, and two virtual communities of practice were created independently and differentiated by how they were moderated: one by an expert caregiver and the other by three health professionals. 38 caregivers and four moderators were involved in the study, which ran between July 2017 and April 2018. A total of 1925 messages were exchanged within the two communities and used as data in the study. Message data was analysed using LINKS (Leveraging Internet Networks for knowledge sharing). RESULTS: Participants were more motivated to acquire knowledge related to caring for the person with Alzheimer's rather than caring for themselves. The purpose of the messages was to inform others about the sender and not to seek answers. It seems that the interaction was more to socialise and to feel heard, than to gain information. Face to face meetings appear to have accelerated community development. On nearly every parameter, behaviour was significantly different in the two communities, reflecting the importance of the character of the moderator. Caring for oneself was a much stronger theme in the community that included health professionals. Experiential knowledge sharing was particularly strong in the group led by a caregiver. DISCUSSION: Caregivers adapted the virtual community of practice to their own needs and mainly shared social knowledge. This focus on social support, which seems to be more valued by the caregivers than information about the disease, was not an expected pattern. Virtual communities of practice where peers count on each other, function more as a support group, whereas those moderated by health professionals function more as a place to go to acquire information. The level of interactivity points to such communities being important for knowledge sharing not mere knowledge transfer.

Caregiver recruitment strategies for interventions designed to optimize transitions from hospital to home: lessons from a randomized trial.

Challenges to recruitment of family caregivers exist and are amplified when consent must occur in the context of chaotic healthcare circumstances, such as the transition from hospital to home. The onset of the COVID-19 pandemic during our randomized controlled trial provided an opportunity for a natural experiment exploring and examining different consent processes for caregiver recruitment. The purpose of this publication is to describe different recruitment processes (in-person versus virtual) and compare diversity in recruitment rates in the context of a care recipient's hospitalization. We found rates of family caregiver recruitment for in-person versus virtual were 28% and 23%, respectively (p = 0.01). Differences existed across groups with family caregivers recruited virtually being more likely to be younger, white, have greater than high school education, and not be a spouse or significant other to the care recipient, such as a child. Future work is still needed to identify the modality and timing of family caregiver recruitment to maximize rates and enhance the representativeness of the population for equitable impact.

Brief transition-focused education for families of autistic youth: preliminary mixed-methods investigation.

PURPOSE: The transition to adulthood is one of the most challenging and complex processes for autistic youth and their families. Few evidence-based transition support programs exist, and those that have garnered support require long-term commitments and resources that may prohibit participation by families with financial and time limitations. The current study investigated the feasibility and initial promise of a brief, caregiver-focused educational transition program for families of autistic youth delivered in the community over a single day. METHODS: Quantitative informant-report and qualitative interview data were collected from 12 caregivers of autistic youth before and after program participation. Using a partially mixed sequential equal status design, quantitative and qualitative data were integrated to evaluate change in caregiver transition knowledge and empowerment, as well as caregivers' perceptions of program feasibility, acceptability, and usefulness. RESULTS: Caregivers reported significant increases in knowledge of transition-related topics and sense of empowerment regarding their family life. Caregiver perceptions of the intervention suggest they found it feasible, acceptable, and useful. CONCLUSIONS: Short-term transition programming may be a helpful option for caregivers who seek transition supports for autistic youth.

The transition to adulthood is a stressful and complex process for autistic adolescents and their caregivers.Many caregivers lack time, financial resources, and access to comprehensive transition supports.Brief educational support is a potential alternative for aiding caregivers in planning for and assisting with adolescents' postsecondary training/education, employment, social, and living arrangements.The Planning for your Loved Ones Future (PLOF) intervention showed promise in improving caregiver knowledge about transition and sense of empowerment, and was described as feasible, accessible, and helpful by those who participated in a pilot study.

Pepea Pamoja:† Applying the Ecological Validity Framework to co-develop a wellbeing and behavioural training program for caregivers of young children with autism in low-resource settings of Kenya and the United States.

BACKGROUND: Autism is a complex neurodevelopmental disability with global prevalence of one in 100 individuals. Poor access to interventions in both under-resourced regions of high-income countries and low- and middle-income countries has deleterious effects on the health and wellbeing of individuals with autism and their families. Our objective was to utilize a reciprocal innovation framework and participatory methods to adapt and co-develop a culturally grounded group-based wellbeing and naturalistic developmental behavioural intervention (NDBI) training program for caregivers of young children with autism to be implemented in Kenya and rural Indiana. METHODS: This study was conducted within the Academic Model Providing Access to Healthcare (AMPATH) program. An evidence-informed Naturalistic Developmental Behavioral Intervention (NDBI) previously utilized in Indiana was adapted and iteratively refined using the Ecological Validity Framework (EVF) by a team of US and Kenyan disability experts. Key adaptations to the program were made across the EVF domains of language, persons, metaphors/content, concepts, goals, methods, and context. RESULTS: Substantial cultural adaptations were made to the NDBI following the EVF model, including the addition of traditional Kenyan cultural practices, use of narrative principles, and focus on daily routines over play. Pepea, the adapted program, involves 10 group sessions covering content in basic education on autism, positive caregiver coping strategies, and behavioural skills training to promote child communication and reduce challenging behaviour. Key adaptations for Pepea were integrated back into a US NDBI caregiver training program. CONCLUSIONS: This study fills a critical gap by detailing the adaptation process of a caregiver wellbeing and naturalistic developmental behavioural training program for caregivers of children with autism in low-resource settings. Our next steps are to report on mixed-methods outcomes from pilot implementation. Our long-term goal is to apply these insights to advance sustainable and scalable autism intervention services across the globe.

Burden of family caregivers in Alzheimer's disease: The role of caregivers' perception of cognitive impairment.

OBJECTIVES: This study examined the role of caregivers' perception of cognitive impairment in burden of family caregivers in Alzheimer's disease (AD). We hypothesized that the evaluation of cognitive impairment by family caregivers plays a pivotal role in burden. METHODS: The study included 110 dyads (person with AD and their caregiver) recruited from a Memory Unit in France. The cognitive impairment and depressive symptoms of person with AD were evaluated by a geriatrician using the Mini Mental State Examination (MMSE) and the Geriatric Depression Scale (GDS-15). Caregivers provided self-reports on the perception of cognitive impairment (IQCODE) of the care recipient, the caregiving burden (ZBI), depressive symptoms (GDS-15), and self-esteem (RSE). Descriptive analyses, comparison of different caregiver burden groups, and multinomial logistic regression analyses to understand correlates of caregiver burden were conducted with SPSS®, version 20. RESULTS: The findings show that the caregivers are on average 60 years old and the majority are women. They care for persons with AD, who are on average 82 years old and most of whom are women. Our results show that the duration of caregiving, depression of the caregiver, and caregivers' perception of cognitive impairment contribute significantly to burden of caregiver. DISCUSSION: This study shows that it is necessary to adopt the caregiver-centered approach to support the dyad. The role of the caregivers' perception of cognitive impairment in AD should be developed when supporting caregivers in suffering.

Caregiver coping mediates the relationship between caregivers' understanding of dementia as terminal and their distress.

We assessed which coping strategies (problem-focused, emotion-focused, dysfunctional) mediate the association between caregivers' understanding of dementia as terminal and their distress. A total of 215 caregivers of community-dwelling persons with severe dementia were surveyed every 4 months over 3 years. A generalized structural equation model was used to test mediation. Caregivers who correctly understood dementia as terminal and those unsure (vs incorrect), experienced more distress (correct: ß [95% confidence interval (CI)]: 0.80 [0.00 to 1.60]; unsure: 0.95 [0.04 to 1.87]). Caregivers with correct understanding of dementia as terminal (vs incorrect) employed more dysfunctional (2.01 [0.60 to 3.42]) and problem-focused coping strategies (2.56 [0.08 to 5.05]). Although dysfunctional and problem-focused coping (associated with higher distress) mediated the positive association between caregivers' understanding that dementia is terminal and their distress, emotion-focused coping (associated with lower distress) did not offset this relationship. Results suggest that terminal illness disclosure to caregivers should be accompanied by interventions to promote emotion-focused coping strategies. Highlights Caregivers who understood dementia as terminal experienced more distress. Dysfunctional and problem-focused coping mediated the positive relationship between terminal illness understanding and caregiver distress. Emotion-focused coping did not offset this relationship.