Caregiver Skills Training Research Articles

E-Learning Modules for the Care of Caregivers of Older Filipinos

As the population ages, so does the challenge to the care of older people with mental health problems. Geriatric syndromes such as delirium, dementia, and depression are amenable to medical management. Beyond care of the patient, however, is care for the caregiver. Behavioral and Psychological symptoms of Dementia (BPSD) such as agitation, aggression, and delusions increase the risk of caregiver stress. This may lead to strain of individual carers and household members, increasing the patient’s risk for poor care, abuse, or institutionalization. Caregiver education and skills training help reduce the level of caregiver stress. These are usually delivered face to face during clinic visits or training modules by dementia care professionals. However, remote alternatives for education, learning and counselling became essential during the COVID-19 pandemic. E-workbooks and online learning modules on dementia, delirium, and depression written by professionals in the Philippines and Asia Pacific are available. An example is the Dementia Community Toolkit in English and its Filipino adaptation. The latter was developed by the Institute on Aging, National Institutes of Health, University of the Philippines Manila, with support from the Mental Health Unit of WHO WPRO. Patient support groups such as the Alzheimer’s Disease Association of the Philippines likewise developed online learning materials. These were and are still freely available via their websites and the webinars have been uploaded in internet and social media sites. The efficacy and acceptability of remote education to reduce informal caregiver burden, negative mood, and quality of life was published in a Cochrane meta-analysis. The authors analyzed experimental trials on information, training, or support compared to usual treatment, waitlist, or attention controls. Following several eligibility criteria, they identified 26 studies with 2367 participants in their review. Although most studies were of low quality and had uncertain risks of bias, there was small evidence that training plus support modules resulted in an improvement of caregiver knowledge. Training alone had no benefit on knowledge. Furthermore, there was no significant effect on patient institutionalization, caregiver burden depression, or quality of life. The article on E-Learning on knowledge on the 3Ds of Geriatric Psychiatry is a good start in understanding the capacity of well-educated Filipino caregivers to improve their knowledge on the subject. Beyond individual knowledge, E-learning modules have the capacity to guide families and communities in reducing ageism and improve patient care for older people with dementia, depression, and delirium. Further experimental studies are needed using locally developed modules. The bigger challenge is accessibility and acceptability of remote learning materials for the greater majority of informal caregivers with lower levels of education and poor access to online resources.

Supporting African communities to increase resilience and mental health of kids with developmental disabilities and their caregivers using the World Health Organization’s Caregiver Skills Training Programme (SPARK trial): study protocol for a cluster randomised clinical controlled trial

BackgroundMost children with developmental disabilities (DD) live in low- and middle-income countries, but access to services is limited, impacting their ability to thrive. Pilot study findings of the World Health Organization’s Caregiver Skills Training (WHO CST) intervention, which equips caregivers with strategies to facilitate learning and adaptive behaviours in children with DD, are promising but evidence from an appropriately powered trial delivered by non-specialist facilitators is lacking. This study will investigate the effectiveness and the resource impacts and costs and consequences of the WHO CST intervention in four sites in rural and urban Kenya and Ethiopia.MethodsThis is a 2-arm multi-site hybrid type-1 effectiveness implementation cluster randomised controlled superiority trial. After baseline assessments (T0) are completed by participants in clusters comprising 7 to 10 caregiver-child dyads, the clusters will be randomised to either the WHO CST intervention arm or a waitlist enhanced care as usual control arm. Further assessments will be completed at endpoint (T1, 18 ± 2 weeks after randomisation) and follow-up (T2, 44 ± 2 weeks after randomisation). The intervention comprises three individualised home visits and nine group sessions with trained non-specialist facilitators. Participants in the control arm will receive the intervention after completing follow-up assessments. We aim to recruit 544 child-caregiver dyads, evenly distributed across the two arms and countries. The co-primary outcomes are the child-focused Child Behavior Checklist (assessing emotional and behavioural problems) and the caregiver-focused Pediatric Quality of Life Inventory (assessing caregiver quality of life), both assessed at endpoint. Secondary outcome measures comprise the two co-primary outcomes at follow-up and ten additional outcome measures at endpoint, assessing stigma-based experiences, depressive symptoms, household food insecurity, child disciplinary strategies and beliefs, CST knowledge and skill competencies, caregiver and child quality of life, social support, and children’s communication modes and functions. After quantitative follow-up assessments are completed, a mixed-methods evaluation approach will be used to investigate implementation processes and acceptability, feasibility, and potential sustainability of the intervention.DiscussionThe study’s findings will provide evidence of the effectiveness and resource impacts and costs and consequences of a non-specialist-delivered intervention in under-resourced contexts in one low-income and one middle-income country in East Africa. Findings will inform future research, intervention, and policy efforts to support children with DD and their families in under-resourced majority world contexts.Trial registrationPan African Clinical Trial Registry PACTR202310908063134. Registered on October 16, 2023.

A stepped wedge cluster randomized trial to evaluate the effectiveness of a multisite family caregiver skills training program.

To assess the effects of an evidence-based family caregiver training program (implementation of Helping Invested Families Improve Veteran Experiences Study [iHI-FIVES]) in the Veterans Affairs healthcare system on Veteran days not at home and family caregiver well-being. Participants included Veterans referred to home- and community-based services with an identified caregiver across 8 medical centers and confirmed family caregivers of eligible Veterans. In a stepped wedge cluster randomized trial, sites were randomized to a 6-month time interval for starting iHI-FIVES and received standardized implementation support. The primary outcome, number of Veteran "days not at home," and secondary outcomes, changes over 3 months in measures of caregiver well-being, were compared between pre- and post-iHI-FIVES intervals using generalized linear models including covariates. Patient data were extracted from the electronic health record. Caregiver data were collected from 2 telephone-based surveys. Overall, n = 898 eligible Veterans were identified across pre-iHI-FIVES (n = 327) and post-iHI-FIVES intervals (n = 571). Just under one fifth (17%) of Veterans in post-iHI-FIVES intervals had a caregiver enroll in iHI-FIVES. Veteran and caregiver demographics in pre-iHI-FIVES intervals were similar to those in post-iHI-FIVES intervals. In adjusted models, the estimated rate of days not at home over 6-months was 42% lower (rate ratio = 0.58 [95% confidence interval: 0.31-1.09; p = 0.09]) post-iHI-FIVES compared with pre-iHI-FIVES. The estimated mean days not at home over a 6-month period was 13.0 days pre-iHI-FIVES and 7.5 post-iHI-FIVES. There were no differences between pre- and post-iHI-FIVES in change over 3 months in caregiver well-being measures. Reducing days not at home is consistent with effectiveness because more time at home increases quality of life. In this study, after adjusting for Veteran characteristics, we did not find evidence that implementation of a caregiver training program yielded a reduction in Veteran's days not at home.

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

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

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

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

Challenges of palliative care identified by stakeholders in resource-limited settings: A multi-regional study in Kazakhstan

IntroductionIn Kazakhstan, a country of 19 million residents, more than 100,000 patients need palliative care. Since at least one family member is usually involved in the care of a terminal patient, more than 200,000 people would benefit from high-quality palliative care services in the country. However, with only 45 physicians and 101 nurses attending to 1925 palliative beds, Kazakhstan seeks to develop palliative services that meet the national needs in resource-limited settings and international standards.The objectives of this study are to explore the challenges faced by stakeholders involved in palliative care in Kazakhstan and to subsequently provide recommendations that can guide policymakers towards further developing palliative care services in the country. MethodsThis cross-sectional descriptive study collected narrative data with in-depth interviews from n= 29 palliative stakeholders (family caregivers n= 12, healthcare professionals =12, administrators n= 5) across five regions of Kazakhstan. Verbatim transcripts of interviews were analyzed using content analysis to identify needs and challenges of stakeholders involved in palliative care. ResultsOur analysis identified seven main challenges of palliative care stakeholders: high out-of-pocket expenditures; lack of mobile palliative care services for home-based care; severe shortages of opioids to prevent pain suffering; poor formal palliative care education; absence of practical skills training for family caregivers; lack of awareness about palliative care in the society, and lack of state support. ConclusionImplementation of national palliative care strategies and policies require a large-scale coordinated involvement of all stakeholders. Our recommendations are based on the idea that coordinated, targeted, and tailored stakeholder engagement is preferred to a one-size-fits-all strategy.

Wheelchair skills training for caregivers of manual wheelchair users: a randomized controlled trial comparing self-study and remote training

In this single-blind randomized controlled trial, we tested the hypotheses that, in comparison with control participants receiving only self-study materials (SS group), caregivers of manual wheelchair users who additionally receive remote training (RT group) have greater total Wheelchair Skills Test Questionnaire (WST-Q) performance and confidence scores post-training and at follow-up; and that self-study and remote training each individually lead to such gains. We studied 23 dyads of wheelchair users and their caregivers. Caregivers in the SS group received a handbook and videorecording. Those in the RT group also received up to four real-time (“synchronous”) sessions remotely. The WST-Q 5.1 was administered pre-training (T1), post-training (T2), and after a 3-month follow-up (T3). The mean total WST-Q scores of both groups rose slightly at each new assessment. For the T2-T1 and T3-T1 gains, there were no statistically significant differences between the groups for either WST-Q performance or WST-Q confidence. For performance, the T2-T1 gain was statistically significant for the RT group and the T3-T2 gain was statistically significant for the SS group. For both groups, the T3-T1 gains in performance were statistically significant with gains of 12.9% and 18.5% relative to baseline for the SS and RT groups. For confidence, only the T3-T1 gain for the SS group was statistically significant with a gain of 4.5% relative to baseline. Although less than the gains previously reported for in-person training, modest but important gains in total WST-Q performance scores can be achieved by self-study, with or without remote training. Registration Number NCT03856749.

First episode psychosis caregiver perspectives on motivational interviewing for loved ones training: A qualitative study.

Past research has found that family involvement in psychosis treatment leads to better patient outcomes. Thus, caregiver communication skills training can be a viable approach to reducing caregiver stress and increasing self-efficacy and communication. The purpose of this qualitative study was to describe family caregivers' perceptions of changes in themselves and their family member with psychosis following their participation in Motivational Interviewing in Loved Ones (MILO), a brief four to five-hour psychoeducational intervention for caregivers. Sixty-three participants in the MILO trials provided written qualitative responses to the prompt, "Since learning the ideas and techniques in this course, what is the most significant change you noticed in yourself, your family, or your relationships?" Responses were collected immediately following MILO participation and 12 weeks later. Qualitative themes were identified through an iterative consensus process. Most participants reported positive changes in multiple domains of their lives. Major themes included: (1) Changes in Self, (2) Changes in Relationships, (3) Changes in Mindset, (4) Use of MILO Skills, and (5) Challenges. Qualitative results support and add context to the previously reported quantitative results from this study. MILO is a promising family intervention that positively influenced family environment and communication in pilot trials. Adaptations of MILO for families outside of a highly educated North American context should be considered.

Psychological interventions for children with emotional and behavioral difficulties aged 5-12 years: An evidence review.

In low- and middle-income countries (LMICs), children and families face a multitude of risk factors for mental health and well-being. These risks are even further exacerbated in humanitarian emergencies. However, access to effective mental health services in such settings is severely limited, leading to a large mental health treatment gap. Middle childhood (5-12years) is a crucial period for human development during which symptoms of emotional distress often emerge, with one in three mental disorders developing prior to age 14. However, there is little evidence of effective psychological interventions for children in this developmental stage, and suitable for implementation within LMICs and humanitarian emergencies. We conducted this evidence review to inform the development of a new intervention package based on existing best practice for this age group, drawing insights from both global and LMIC resources. Our review synthesizes the findings of 52 intervention studies from LMICs and humanitarian settings; 53 existing systematic reviews and meta-analyses covering both LMICs and high-income countries, and 15 technical guidelines. Overall, there is limited high-quality evidence from which to draw recommendations for this age group; however, some promising intervention approaches were identified for children experiencing externalizing and internalizing symptoms, traumatic stress and a combination of difficulties. Several effective interventions utilize cognitive-behavioral techniques for children, in either group or individual format, and incorporate caregiver skills training into treatment, although the findings are mixed. Most evaluated interventions use specialists as delivery agents and are lengthy, which poses challenges for scale-up in settings where financial and human resources are scarce. These findings will inform the development of new psychological interventions for children in this age group with emotional and behavioral difficulties.

"I've been doing this for years": the COVID-19 pandemic and family caregiver isolation and loneliness.

Family caregivers are family members or friends of care recipients who assist with activities of daily living, medication management, transportation, and help with finances among other activities. As a result of their caregiving, family caregivers are often considered a population at risk of experiencing increased stress, isolation, and loneliness. During the COVID-19 pandemic in the US, social isolation and decrease in social activities were a top concern among older adults and their family caregivers. Using secondary analysis of survey data as part of a multi-site implementation trial of a caregiver skills training program, we describe differences in caregiver experiences of loneliness before and during the COVID-19 pandemic. Health and wellbeing surveys of family caregivers were collected on 422 family caregivers of veterans before and during COVID-19. Logistic regression modeling examined whether the loneliness differed between caregiver groups pre vs during COVID-19, using the UCLA 3-item loneliness measure. Rapid directed qualitative content analysis of open-ended survey questions was used to explore the context of how survey responses were affected by the COVID-19 pandemic. There were no significant differences in loneliness between caregivers pre vs during COVID-19. In open-ended responses regarding effects of COVID-19, caregivers described experiencing loneliness and social isolation; why they were unaffected by the pandemic; and how caregiving equipped them with coping strategies to manage negative pandemic-related effects. Loneliness did not differ significantly between pre vs during COVID-19 caregivers. Future research could assess what specific characteristics are associated with caregivers who have resiliency, and identify caregivers who are more susceptible to experiencing loneliness. Understanding caregiver loneliness could assist other healthcare systems in developing and implementing caregiver support interventions.

ISupport: the online support program for caregivers of people with dementia

Objective:In this first presentation, we will present iSupport, WHO’s skills training and support program for caregivers of people living with dementia, and summarize the theoretical and empirical background for its development and cultural specific adaptations, and the lessons learned so far. WHO iSupport consists of 23 sessions in total, covering five modules: (a) what is dementia (one session); (b) being a carer (four sessions); (c) caring for me (three sessions); (d) providing everyday care (five sessions) and (e) dealing with changing behaviour (ten sessions).Methods:The overview that we will present in this session will be based on the fast growing evidence on the adaptation and implementation of iSupport described in the scientific literature.Results:First steps have been undertaken to translate and adapt WHO iSupport systematically and culturally fair for several countries and specific target groups and first studies on the impact have been carried out. Published results from India, Portugal, Australia and Brazil will be summarized, also discussing some experienced barriers for implementation related to the way the intervention is provided and implemented, also related to cultural issues.Conclusion:The scaling of programs like WHO iSupport remains challenging. Ongoing research shows that interventions for caregivers of people living with dementia especially in LMICs such as India require further consideration. However, low uptake and adherence help us better understand which barriers caregivers face and how future research might tailor iSupport and other online programs better to carers’ needs.Support and training programmes such as iSupport, are more important than ever in the context of the ongoing COVID-19 pandemic. They present a real opportunity to help to reach the global target set by WHO that 75% of countries will provide support and training programmes for caregivers of people living with dementia by 2025.

Caregiver skills training for caregivers of individuals with neurodevelopmental disorders: A systematic review and meta-analysis.

To systematically review the effectiveness of caregiver and parent skills training programs, including caregiver-mediated interventions, for caregivers of individuals with neurodevelopmental disorders. We conducted a systematic review with a random-effects meta-analysis. We searched 11 electronic databases through July 2021 and used a snowball methodology to locate relevant articles of randomized controlled trials. Effect size estimates were pooled using Hedges' g from data extracted from study reports and through author requests using random-effects meta-analyses for three child outcome categories (child development, adaptive behavior, and problem behavior) and three caregiver outcome categories (parenting skills and knowledge, psychological well-being, and interpersonal family relations). We located 44 910 records, from which 75 randomized controlled trials involving 4746 individuals with neurodevelopmental disorders and their caregivers were included. Random-effects meta-analyses showed improvements in child development (g = 0.30; 99% confidence interval [CI] = 0.07-0.53) and reduction in reported problem behaviors (g = 0.41; 99% CI = 0.24-0.59), but not a statistically significant improvement in adaptive behavior (g = 0.28; 99% CI = -0.42 to 0.98). Caregivers showed improvements in parenting skills and knowledge (g = 0.72; 99% CI = 0.53-0.90), psychological well-being (g = 0.52; 99% CI = 0.34-0.71), and interpersonal family relations (g = 0.76; 99% CI = 0.32-1.20). Caregiver skills training programs benefit both caregivers and children with neurodevelopmental disorders. Skills training programs improve child development and behavior, improve parenting skills, reduce caregiver mental health issues, and improve family functioning. Programs using culturally appropriate training material to improve the development, functioning, and participation of children within families and communities should be considered when caring for children with neurodevelopmental disorders. Caregiver skills training programs are effective interventions for both caregivers and children. Children with neurodevelopmental disorders benefit from improvements in development and reduction of problematic behaviors. Caregivers benefit from enhanced skills and psychological well-being. Improvements in interpersonal family relationships have also been documented.

Evaluation of an adapted virtual training for master trainers of the WHO Caregiver Skills Training Program during the COVID-19 pandemic.

The COVID-19 pandemic interrupted in-person professional activities. We developed and evaluated a remote training approach for master trainers of the Caregiver Skills Training Program. Master trainers support community practitioners, who in turn deliver the Caregiver Skills Training Program to caregivers of children with developmental delays or disabilities. The Caregiver Skills Training Program teaches caregivers how to use strategies to enhance learning and interactions during everyday play and home activities and routines with their child. The aim of this study was to evaluate the remote training of master trainers on Caregiver Skills Training Program. Twelve out of the 19 practitioners who enrolled in the training completed the study. The training consisted of a 5-day in-person session completed prior to the pandemic, followed by supporting participants' ability to identify Caregiver Skills Training Program strategies through coding of video recordings over 7 weekly meetings and group discussions and ended with participants independently coding a set of 10 videos for Caregiver Skills Training Program strategies. We found all but one participant was able to reliably identify Caregiver Skills Training Program strategies from video recordings despite a lack of ability to practice the Caregiver Skills Training Program strategies with children due to the pandemic. Taken together, our findings illustrate the feasibility and value of remote training approaches in implementing interventions.

Non-specialist delivery of the WHO Caregiver Skills Training Programme for children with developmental disabilities: Stakeholder perspectives about acceptability and feasibility in rural Ethiopia.

Children with developmental disabilities including autism who live in low- and middle-income countries have very limited access to care and intervention. The World Health Organization initiated the caregiver skills training programme to support families with children with developmental disabilities. In Ethiopia, contextual factors such as poverty, low literacy and stigma may affect the success of the programme. In this study, we aimed to find out if the caregiver skills training programme is feasible to deliver in rural Ethiopia and acceptable to caregivers and programme facilitators. We trained non-specialist providers to facilitate the programme. Caregivers and non-specialist facilitators were asked about their experiences in interviews and group discussions. Caregivers found the programme relevant to their lives and reported benefits of participation. Facilitators highlighted the skills they had acquired but also emphasised the importance of support from supervisors during the programme. They described that some caregiver skills training programme topics were difficult to teach caregivers. In particular, the idea of play between caregiver and child was unfamiliar to many caregivers. Lack of available toys made it difficult to practise some of the caregiver skills training programme exercises. Participants indicated that the home visits and group training programme components of the caregiver skills training were acceptable and feasible, but there were some practical barriers, such as transportation issues and lack of time for homework practice. These findings may have importance to non-specialist delivery of the caregiver skills training programme in other low-income countries.

Telehealth-delivered caregiver training for autism: Recent innovations.

Providing treatment to children with autism is a global health priority, and research demonstrates that caregivers can be trained in techniques to promote their child's social interaction, communication, play, positive behavior and skills. These caregiver-mediated interventions have been shown to promote a number of positive outcomes in children with autism, as well as their caregivers. When provided by telehealth, data indicate that caregiver training is acceptable and feasible, and associated with similar positive outcomes as live face-to-face training. Telehealth innovations, which have accelerated during the COVID-19 era, have demonstrated advantages over in-person delivery of services in terms of cost effectiveness and increased accessibility, however, more research is needed on feasibility, acceptability and effectiveness for different populations in different contexts. This brief review will highlight recent caregiver skills training interventions for autism that have been successfully adapted or designed for telehealth delivery. Telehealth interventions that are scalable, adaptable, caregiver-mediated, open-access, and delivered as part of a stepped care model, have the potential to address the global treatment gap for families of children with autism and other neurodevelopmental disabilities. Considerations relevant to the global scale-up of caregiver-mediated interventions will also be discussed.

Assessing the Unmet Needs of Spanish Speaking Family Caregivers of Persons Living with Dementia in the Greater Boston Area

AbstractBackgroundSpanish‐speaking family caregivers of persons living with dementia (PLD) have limited resources in Spanish to aid in psychological coping with caregiver burden. They often have difficulty attending in‐person training due to barriers such as transportation costs, identifying substitute care, and ongoing COVID‐19 pandemic containment measures. There are few studies identifying Spanish language caregiver unique needs and preferences regarding desired caregiving skills and stress‐reduction interventions. In this study, we sought to identify the unmet needs of Spanish‐speaking family caregivers of PLD in the greater Boston area, as well as their preferences for virtual intervention frequency and duration.MethodsWe conducted two virtual focus groups with twelve Spanish language family caregivers of PLD (ages 37 to 87 years) recruited from the greater Boston area. Participants were asked semi‐structured questions regarding their unmet needs for caregiver skills training and stress reduction. We employed an inductive and deductive driven mixed method analytic approach. A taxonomy was created to organize results based on participant responses.ResultsThree major thematic clusters emerged. First, caregivers noted a desire to develop skills for managing stress, emotional reactivity, frustration, and grief. Second, there was an expressed need for education regarding disease‐specific knowledge such as stages of dementia, common manifestations, management of challenging symptoms and communication strategies with the PLD; how to navigate the health care system; and finding additional resources for care in the community. Third, there was an interest in learning about interventions for the PLD, such as specific activities to help keep them engaged and active. A particular interest was expressed in any interventions that might slow disease progression. Regarding frequency and duration for virtual intervention, caregivers most commonly preferred weekly sessions for 6‐10 weeks.ConclusionsUnmet needs of Spanish language family caregivers of PLD in the greater Boston area include education regarding disease‐specific symptoms and their management, and resources to enhance well‐being both in the caregiver and the PLD. Based on these results, we will develop a comprehensive virtual therapeutic intervention incorporating stress reduction techniques to facilitate emotion regulation, caregiver skills training, psychoeducation regarding dementia and caregiver resources, and healthful activities for the PLD.

Supporting Caregivers Remotely During a Pandemic: Comparison of WHO Caregiver Skills Training Delivered Online Versus in Person in Public Health Settings in Italy.

Feasibility, acceptability and effectiveness data of a virtual adaptation of the WHO Caregiver Skills Training (CST; n = 25) were compared with those of a pilot RCT of CST delivered in person (n = 43) against treatment as usual (TAU; n = 43). Virtual CST was delivered with high levels of integrity, but received lower ratings in some caregiver- and facilitator-rated acceptability and feasibility dimensions. Qualitative analysis identified both benefits (flexibility, convenience, clinical usefulness) and challenges, (technological issues, distraction from family members, emotional distance). Virtual and in-person CST improved significantly more on caregiver competence than TAU; there were no other significant effects. Potential for use of virtual CST as a clinical response in contexts where in-person delivery is not possible is discussed.

Validation of the transactional eHealth literacy instrument with cancer caregivers.

Family members are important sources of support for patients with cancer. They access, evaluate, and engage with online information and discuss it with a cancer clinician. This study validates the 4-dimensions, 18-item Transactional eHealth Literacy Instrument (TeHLI) and proposed to include Clinical eHealth Literacy as a 5th dimension. The Leukemia & Lymphoma Society (LLS) disseminated an online survey to 121 family member caregivers between March-June 2020. We conducted confirmatory factor analyses (1) to examine model fit for the 4-factor TeHLI in the cancer caregiver population, and (2) to examine the model fit when adding the 5th factor. The 4-dimension model yielded acceptable model fit (RMSEA = 0.09; 90% CI = 0.08-0.11; CFI = 0.98; TLI = 0.98; SRMR = 0.07). The 5-dimension model also yielded acceptable model fit (RMSEA = 0.08; 90% CI = 0.07-0.10; CFI = 0.97; TLI = 0.97; SRMR = 0.08), supporting the expansion of the TeHLI within this population. The five-dimension TeHLI is a valid and reliable measure of eHealth literacy among blood cancer caregiver populations. The TeHLI can be used as an outcome measure for communication skills training for caregivers, patients, and clinicians.

Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa.

Young children with developmental disabilities and delays who live in low- and middle-income countries are at significant risk of not reaching their full potential. We know that daily interactions with their caregivers (parents or other people taking care of them) play an important role in promoting their development. However, having a child with developmental disabilities can have a negative impact on carers' mental health and well-being, which in turn can influence their capacity to care for their children. To date, very little attention has been given to the caregivers' capacity to care. The World Health Organization developed a Caregiver Skills Training programme which includes a brief, three-session module that focuses on improving caregivers' well-being and mental health. This well-being programme is based on acceptance and commitment therapy. Acceptance and commitment therapy shows increasing evidence of helping people respond to their stressors, thoughts, feelings and experiences a little differently and commit to small changes that are in line with their personal values. Acceptance and commitment therapy has shown promise in improving feelings of well-being in caregivers of children with developmental disabilities. We adapted the World Health Organization Caregiver Skills Training Caregiver well-being module to suit the South African context. The resultant 'Well Beans for Caregivers' was then delivered to caregivers from a rural, low-resource setting in South Africa. We found the intervention easy to implement, highly acceptable to caregivers and showed promising impacts on caregivers' well-being and mental health. This intervention has the potential to be implemented widely and sustainably to build caregivers' capacity to care for their children.

Adapting and pretesting the World Health Organization’s Caregiver Skills Training Program for children with autism and developmental disorders or delays in Hong Kong

The World Health Organization Caregiver Skills Training Program (WHO-CST) was developed to strengthen caregivers’ skills in supporting children with developmental delays and the caregivers’ well-being. The WHO-CST Hong Kong (HK) was adapted, and pre-pilot tested to support families with children suspected of having developmental delays and autism spectrum disorder and to empower the caregivers to foster their children’s learning, social communication, and adaptive behavior. A sequential mixed-methods research methodology was undertaken to examine the adaptation process and initial implementation experiences. The acceptability, feasibility, and perceived benefits of the WHO-CST were assessed using stakeholders’ and caregivers’ qualitative and caregivers’ quantitative pre- and post-intervention feedback. The data included materials generated from (1) three consultation meetings with stakeholders; (2) detailed reviews of the translated and adapted WHO-CST materials by master trainees (n = 10) trained by the WHO-CST representatives; (3) needs assessment focus group interviews with caregivers (n = 15) of children with autism spectrum disorder; and (4) pre- and post-CST program qualitative focus group interviews and quantitative evaluation. Consultation with stakeholders suggested that the program was acceptable for the local community, but the home visit and fidelity components were initially considered to be challenges towards the feasibility and sustainability of the program. Caregivers in the needs assessment focus groups gave widely diverse views about the program’s uniqueness, length, delivery mode, and the inclusion of videotaping in-home visits. Post-intervention comments by caregivers about the program were mainly positive, while the MTs were critical of the content and length of the training and fidelity process. As one of the first high-income locations to adopt the WHO-CST, the evaluation findings of the WHO-CST-HK indicate that it is feasible and acceptable to implement the program in a metropolitan area where families have busy work schedules and are very conscious of privacy issues. The study results suggest that the WHO-CST program in HK and other high-income countries require scaling up and further evaluation of its implementation in real community settings. This involves systemic and contextual changes to allow task-sharing between professionals and non-specialists at the macro level. Furthermore, technology should be used to support the supervision of non-specialists. In addition, easier access to the WHO-CST materials at the micro level is required to ensure equity, equality, diversity, and inclusion of diversified families of children with developmental delays.