Changes in Caregiver Outcomes After Participation in the Engaged Eaters Program: A Caregiver-Mediated Feeding Intervention for Autistic Children and Their Families.

IMPORTANCE: Caregivers are essential partners in caregiver-mediated interventions that build on family routines and practices. Research identifying how participation as an intervention partner influences caregivers' outcomes, including stress and self-efficacy, is scarce. OBJECTIVE: To evaluate caregiver outcomes (stress, self-efficacy, and positive feeding responses and confidence) after participation in the Engaged Eaters Program. DESIGN: Quasi-experimental pretest-posttest design. SETTING: In-home via telehealth. PARTICIPANTS: Fourteen primary caregivers of an autistic child (ages 2-7 yr) with feeding challenges. INTERVENTION: The Engaged Eaters Program-Telehealth, a caregiver-mediated 6-mo in-home telehealth feeding intervention for autistic children ages 2 to 7 yr that included 24 intervention visits, eight caregiver training modules, and consultation with a dietician. OUTCOMES AND MEASURES: Relationships between child feeding challenge severity and caregiver outcomes and individual differences in caregivers' intervention responses were evaluated. We assessed caregivers' stress (Parenting Stress Index, Fourth Edition Short Form), self-efficacy (Parent Sense of Competence Scale), Positive Feeding Responses and Confidence (PFRC; composite score of items from other assessments), and individual intervention response using pre- to postintervention change in scores. RESULTS: Exploration of individual differences revealed that only caregivers with intake PFRC scores below the mean made significant improvements by the end of the intervention. No significant group-level changes were identified for stress, self-efficacy, or PFRC. Feeding challenge severity was not significantly related to caregiver outcomes. CONCLUSIONS AND RELEVANCE: The results emphasize the importance of considering baseline practices, efficacy, and caregiver confidence when engaging caregivers in intervention. Future research should explore the nuanced relationship between caregiver outcomes and child characteristics. Plain-Language Summary: Caregivers are essential partners with feeding interventions that build on family routines and practices. When working with caregivers, occupational therapists should consider caregivers' readiness for and responses to an intervention because intervention practices may differentially affect caregivers' parenting practices, confidence, and self-efficacy. Caregivers' responses may also affect the overall effectiveness of a caregiver-mediated intervention. Positionality Statement: The term caregiver-mediated in used throughout this article in place of parent-mediated to be inclusive of all types of caregivers.

Home symptom management training programme: carer evaluation.

OBJECTIVES: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. METHODS: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. RESULTS: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. CONCLUSION: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.

Booklet and Motivational Interviewing to Promote Self-efficacy in Parents/Caregivers of Children with Asthma: A Clinical Trial.

Background: Asthma is the most common chronic disease in childhood which accounts for numerous annual hospitalizations due to a lack of management and proper management of the disease. Thus, this study aimed to evaluate the effect of using an educational booklet with or without combination with motivational interviewing (MI) on the self-efficacy of parents/caregivers in the control and management of childhood asthma. Methods: A clinical trial was carried out with 86 parents/caregivers of children with asthma aged between 2 and 12 years who were followed up in primary health care units from March 2019 to December 2020. Participants were randomly assigned to two groups: one of the groups read the booklet and the other read the booklet combined with the MI. The Brazilian version of the Self-Efficacy and Their Child's Level of Asthma Control scale was applied before and 30 days after the intervention for assessment of self-efficacy. Data were analyzed using SPSS version 20.0 and R 3.6.3 software. P values<0.05 were considered significant. Results: There were 46 participants in the booklet group and 40 in the booklet and MI group. Both groups were effective in increasing total self-efficacy scores after the intervention (P<0.001). No statistically significant difference was found between the scores of the two groups (P=0.257). Conclusion: The educational booklet with or without combination with MI can increase the self-efficacy of parents/caregivers of children with asthma. The findings could be considered by healthcare providers for the empowerment of caregivers of children with asthma in the control and management of their children's asthma.Trial Registration Number: U1111-1254-7256.

Asthma Academy for Family Caregivers: A Quality Improvement Project.

Background: Asthma affects one in every 12 children in United States with significant prevalence in underserved groups. Family caregiver education is essential to improve childhood asthma control. The literature suggests that family caregivers' lack of knowledge about asthma management affects their children's health outcomes. An evidence-based education program that improves caregivers' asthma knowledge may improve the family's well-being. Objectives: The goal of the Asthma Academy project is to improve the disease management of children with asthma by providing an in-person family caregiver education program. The main objectives are to (a) improve family caregivers' asthma knowledge, (b) enhance their confidence in asthma management, and (c) evaluate caregivers' satisfaction with the education program. Method: This quality improvement project used an in-person educational program with an asthma education video resource for caregivers of children with asthma. Results: The family caregivers' asthma knowledge improved significantly after the education. The confidence levels in caring for children with asthma increased. Caregivers' satisfaction with the Asthma Academy education session was favorable. Conclusions: The Asthma Academy was an acceptable and effective delivery method of education for family caregivers of children with asthma in the in-patient setting. Empowering family caregivers of vulnerable children through asthma education may improve child health outcomes and mitigate complications from asthma. Implications for Nursing Nurses and clinicians are steward of providing patient education. Individualized, patient-tailored education is recommended.

Sim-Based Home Tracheostomy Care: A Mixed Methods Study on Outcomes and Parental Preparedness.

OBJECTIVES: To assess effects of a Simulation-Based Discharge Education Program (SDP) on long-term caregiver-reported satisfaction and to compare clinical outcomes for children with new tracheostomies whose caregivers completed SDP versus controls. METHODS: The study employed a mixed methods approach: (1) a qualitative analysis of feedback from caregivers who previously completed SDP, and (2) a quantitative retrospective case-control study comparing outcomes between children with new tracheostomies whose caregivers completed SDP versus controls, matched on discharge disposition and age. The primary outcome was emergency department visits for tracheostomy-related issues within 1 year of discharge. RESULTS: Feedback from 18 interviews was coded into 5 themes: knowledge acquisition, active learning, comfort and preparedness, home application of skills, and overall assessment. Caregivers of 27 children (median age 26 months [interquartile range (IQR) 5.5 months-11 years]) underwent SDP training. Clinical outcomes of these children were compared with 27 matched children in the non-SDP group (median age 16 months [IQR 3.5 months-10 years]). There was no significant difference in ED visits for tracheostomy-related complications within 1 year of discharge between the SDP group and non-SDP group (2 [IQR 0-2] vs 1 [IQR 0-2], P = .2). CONCLUSIONS: Caregivers reported overwhelmingly positive experiences with SDP that persisted even 4 years after training. Caregiver participation in SDP did not yield a significant difference in ED visits within 1 year of discharge for tracheostomy-related complications compared with control counterparts. Future steps will identify more effective methods for comparing and analyzing clinical outcomes to further validate impacts of simulation-based programs.

Advocacy Connection Team-Now educational program for headache fellows and patients/caregivers: Assessment of educational objectives.

OBJECTIVE: To assess for improvement in comfort in participating in advocacy for migraine and headache disorders and knowledge needed for successful advocacy. BACKGROUND: The Advocacy Connection Team (ACT)-Now program is an educational program offered through Miles for Migraine, a non-profit advocacy organization. It is designed to teach headache fellows and patients advocacy skills. METHODS: In a cross-sectional pre-test-post-test design, the 2021 ACT-Now cohort of 98 participants were administered a set of 11 pre-course survey questions identifying their role (healthcare provider/headache fellow or patient/caregiver), baseline knowledge of migraine-related disability and stigma, and baseline engagement and comfort with advocating. The post-course survey questions were the same as the pre-course questions, with the addition of one question assessing knowledge of migraine-related disability, additional questions addressing comfort levels advocating with insurance and policymakers, as well as creating an advocacy plan. RESULTS: For the pre-course survey, 69 participants responded and for the post-course survey, 40 participants responded. Compared to the pre-course survey, participants were able to correctly identify epidemiological data about migraine following the ACT-Now course (pre-course 46% correct, post-course 58% correct, p = 0.263). There was also an increase in the comfort level of participants in advocacy activities, including the creation of an advocacy action plan (pre-course 23% were "very comfortable" advocating, post-course 63%, p < 0.05). CONCLUSION: These results demonstrate that ACT-Now is effective at improving advocacy skills in a mixed cohort of patients and headache fellows, giving them the skills to create advocacy plans and engage with other patients and physicians, payers, and policymakers to create a more understanding, equitable and compassionate world for persons with migraine and other headache diseases.

A Mobile Health Transitional Care Intervention Delivered by Nurses Improves Postdischarge Outcomes of Caregivers of Patients with Traumatic Brain Injury: A Randomized Controlled Trial.

OBJECTIVE: Caring for patients with traumatic brain injury (TBI) during the transition from hospital to home can be psychologically challenging to caregivers. This study aimed to assess the effectiveness of a novel mobile health (m-health) transitional care intervention to reduce stress and burden of caregivers of patients with TBI and to reduce readmissions. METHODS: A randomized controlled trial was conducted with 74 caregivers of adult patients with moderate or severe TBI admitted to a referral hospital in Indonesia. An m-health application for Android mobile phones was designed including education and information for caregivers. The application included an online chat feature with weekly monitoring. The m-health transitional care intervention also included face-to-face education before hospital discharge. Primary outcomes were caregivers' stress and burden. Outcomes were measured at 3 time points: at hospital discharge, 2 weeks postdischarge, and 4 weeks postdischarge. Random Allocation Software was used for randomization of study participants. RESULTS: Final analysis included data of 37 caregivers in the intervention group and 37 caregivers in the control group. Stress within the intervention group decreased over time (P < 0.001, mean difference = 11.05). Between both groups, stress was significantly different at 2 weeks and 4 weeks postdischarge (P < 0.001). Caregiver burden showed similar results (2 weeks postdischarge P < 0.001 and 4 weeks postdischarge P < 0.001). Only 1 patient in the control group was readmitted to the hospital. CONCLUSIONS: The m-health transitional care intervention reduced stress and burden of caregivers of patients with moderate or severe TBI. Nurses should consider using m-health technologies to support caregivers in the transition from the hospital into the community.

X-linked hypophosphatemia: The value of feedback focus groups to assess patient and caregiver needs.

X-linked hypophosphatemia (XLH) is a rare, multi-systemic, invalidating disease requiring a multi-disciplinary approach. No specific action in XLH, neither for the patients' specific needs nor for the methodology for the evaluation of these were found. Thus, to identify the needs of XLH patients and their caregivers, we organised focus groups in our reference centre with a view to build educational sessions. Focus groups including either XLH children, XLH adults, or caregivers ran in parallel. Each group was led by a person trained in therapeutic education (nurse, paediatric nephrologist) with another healthcare provider specialised in XLH (rheumatologist, nephrologist). One additional person with knowledge of XLH (clinical research associate, paediatric resident) took minutes. The duration of each session was 1.5h; XLH patients/caregivers were asked to answer age-adapted "open questions" on their daily life and quality of life. At the end, a global restitution was made. The needs identified were later grouped and analysed, which allowed us to build the educational sessions. The XLH children group included 5 children, the XLH adults group included 10 adults, and the caregivers group included 6 parents or partners. Major needs were identified: knowledge of XLH, treatment, dental care and adapted physical activity, with additional questions on socio-professional adaptations and financial support in adults. Partner patients were also identified to co-build the support programme. The study allowed us to identify the needs of XLH patients and their caregivers using the focus group method and then, using these needs, to build educational sessions and a therapeutic education programme for XLH patients.

Child-TRACH: Management of tracheostomy in children, a Yo-IFOS survey.

OBJECTIVES: The number of tracheostomies in children has increased the last twenty years thanks to neonatal and pediatric intensive care improvement. As it is often a difficult situation to deal with for children and their caregivers, we wished to draw up the inventory of the management protocols of pediatric tracheostomies around the world. METHODS: We performed an online international survey for ENTs managing children with tracheostomies. The survey was in English and diffused through ENT national and international societies (International Federation of Otorhinolaryngologists Societies, IFOS and French Society of Otorhinolaryngologists, SFORL). Answers were anonymized and collected online between September 2021 and January 2022. All data were analyzed as a whole and according to the continent. RESULTS: 119 ENTs from the different continents responded to the survey: Europe (45.4 %), Asia (16 %), North America (14.3 %), South America (10.9 %), Africa (6.7 %) and Oceania (6.7 %). The most common indication for tracheostomy was laryngeal obstruction (77.3 %). Once initial management and surgical procedure performed, the majority of children returned home with their tracheostomy; tracheostomy was a contraindication for only 1.7 % of the responders. Concerning patient autonomy on daily care of the cannula at home, it was acquired in only 27.7 % of the cases, no difference was observed between countries (p = 0.22). Therapeutic patient education (TPE) was offered for 86.9 % of the patients taken care by the responders: it was dedicated to training the parents (96.8 %), with no differences between countries; however, in some countries, TPE for could also be offered to other caregivers. The mean delay between surgery and first change of cannula was 27.3 days (1-100) but varied depending on the country (4 days in Nigeria, 20 days in north America, 40 days in Europe, Asia and south America). CONCLUSION: Although tracheostomies in children can encompass several indications, practices across the world are similar and aim to offer a life as normal as possible for these children.

Examining cultural adaptations of the savvy caregiver program for Korean American caregivers using the framework for reporting adaptations and modifications-enhanced (FRAME).

BACKGROUND: The Framework for Reporting Adaptations and Modifications-Enhanced (FRAME) is a tool that systematically guides decision-making and reporting of adaptations made to evidence-based interventions. Using FRAME, we documented the process and outcomes of adapting the Savvy Caregiver Program (SCP) for Korean American dementia caregivers. METHODS: Sequential adaptation was initiated with linguistic attunement, followed by pilot implementation and full adaptation. Our data-driven adaptation with multiple data sources and a feedback loop among multiple stakeholders yielded a total of 32 modifications, and each was coded according to the eight domains of FRAME: (1) what was modified, (2) who participated in recommending and deciding the modification to be made, (3) when the modification occurred, (4) whether the modification was planned, (5) whether the modification was fidelity-consistent, (6) whether the modification was temporary, (7) at what level of delivery, the modification was made, and (8) why the modification was made. RESULTS: The areas of adaptation were evenly distributed across context (37.5%), content (31.2%), and training (31.2%). The primary reasons for modification were for engagement (62.5%), followed by fit with recipients (43.8%) and outcome improvement (31.1%). About 66% of the modifications were applied to the entire target group, and all modifications were fidelity-consistent. CONCLUSIONS: The FRAME categorization provided a detailed understanding of the process and nature of adapting the SCP and served as a foundation for further implementation and scale-up. FRAME not only serves as a guide for adapting evidence-based interventions but also promotes their replicability and scalability.

Social determinants of health literacy among parents and caregivers in the US-Affiliated Pacific.

Health literacy is understudied in the US-Affiliated Pacific (USAP), where local populations have historically experienced social marginalization and disproportionate health inequities caused by the social determinants of health (SDOH). This cross-sectional study analyzed several SDOH indicators-acculturation, use of food assistance programs and demographic characteristics (race and ethnicity, household income, primary language spoken at home and educational attainment)-and their relationship to health literacy among 1305 parents/caregivers of young children ages 2-8 years old who participated in the Children's Healthy Living (CHL) program in Alaska, American Samoa, Commonwealth of the Northern Mariana Islands (CNMI), Guam, and Hawai'i. Significantly increased odds of low health literacy were found among parents/caregivers with households where a language other than English was the primary language compared to English-only households (OR = 1.86, 95% CI = 1.22, 2.82), household income of <$35 000 compared to ≥$35 000 (OR = 2.15, 95% CI = 1.13, 4.07), parents/caregivers of Asian children compared to parents/caregivers of White children (OR = 2.68, 95% CI = 1.05, 6.84), parent/caregivers with less than or some high school education compared to high school completion (1st- to 8th-grade OR = 4.46, 95% CI = 2.09, 9.52; 9th- to 11th-grade OR 1.87, 95% CI = 1.06, 3.30) and parent/caregivers with acculturation status defined as marginalized as compared to integrated (OR = 2.31, 95% CI = 1.09, 4.86). This study indicates that some USAP parents/caregivers may lack the capacity to acquire health information, utilize health resources, and navigate health decision making. Future efforts to understand and improve health literacy in the USAP should be population specific, thoroughly assess personal and organizational health literacy, and inventory community health care capacity.

Autism Caregiver Coaching in Africa (ACACIA): Protocol for a type 1-hybrid effectiveness-implementation trial.

BACKGROUND: While early autism intervention can significantly improve outcomes, gaps in implementation exist globally. These gaps are clearest in Africa, where forty percent of the world's children will live by 2050. Task-sharing early intervention to non-specialists is a key implementation strategy, given the lack of specialists in Africa. Naturalistic Developmental Behavioral Interventions (NDBI) are a class of early autism intervention that can be delivered by caregivers. As a foundational step to address the early autism intervention gap, we adapted a non-specialist delivered caregiver coaching NDBI for the South African context, and pre-piloted this cascaded task-sharing approach in an existing system of care. OBJECTIVES: First, we will test the effectiveness of the caregiver coaching NDBI compared to usual care. Second, we will describe coaching implementation factors within the Western Cape Department of Education in South Africa. METHODS: This is a type 1 effectiveness-implementation hybrid design; assessor-blinded, group randomized controlled trial. Participants include 150 autistic children (18-72 months) and their caregivers who live in Cape Town, South Africa, and those involved in intervention implementation. Early Childhood Development practitioners, employed by the Department of Education, will deliver 12, one hour, coaching sessions to the intervention group. The control group will receive usual care. Distal co-primary outcomes include the Communication Domain Standard Score (Vineland Adaptive Behavior Scales, Third Edition) and the Language and Communication Developmental Quotient (Griffiths Scales of Child Development, Third Edition). Proximal secondary outcome include caregiver strategies measured by the sum of five items from the Joint Engagement Rating Inventory. We will describe key implementation determinants. RESULTS: Participant enrolment started in April 2023. Estimated primary completion date is March 2027. CONCLUSION: The ACACIA trial will determine whether a cascaded task-sharing intervention delivered in an educational setting leads to meaningful improvements in communication abilities of autistic children, and identify implementation barriers and facilitators. TRIAL REGISTRATION: NCT05551728 in Clinical Trial Registry (https://clinicaltrials.gov).

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

LAY ABSTRACT: 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.

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

LAY ABSTRACT: 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.

Geriatric Communication Skills Training Program for Oncology Healthcare Providers: a Secondary Analysis of Patient and Caregiver Outcomes.

Geriatric cancer patients and their caregivers have unique needs that make it difficult for their healthcare providers (HCPs) to effectively communicate with them. As ineffective communication can lead to negative health outcomes, it is important that oncology HCPs receive specialized training on communication with older adult patients and their caregivers. We conducted a small pilot study examining audio recordings of clinical encounters between HCPs and older adult cancer patients/caregivers and questionnaires completed by the patients and their caregivers before and after the HCPs participated in a geriatric communication skills training program. Eleven HCPs completed the 6-h Geriatric Comskil Training. Two clinic consultations with unique geriatric patients (n = 44) and their caregivers (n = 29) were recorded before and after training and coded for HCPs' use of communication skills. Patients and caregivers also completed surveys measuring their satisfaction with HCP communication and perceived empathy. Analysis of the audio recordings revealed that HCPs did not increase their use of communication skills after training. Although our sample was too small to detect statistical significance, measures of effect size showed trending improvements in patients' and caregivers' perceptions of HCPs' empathy and satisfaction with their communication after training. Our findings build on previous studies evaluating the feasibility and effectiveness of the Geriatric Comskil Training in real world setting and indicate that the training may have improved HCPs' communication with older adult patients and their caregivers even if their use of their observable communication skills did not change.

Effect of the Caregivers-to-Caregivers Training Programme on informed caregivers of persons with mental disorders: A pilot study.

OBJECTIVE: Many people with mental disorders are cared for by informed caregivers, but they usually have limited care-related training and lack caregiving capacity and support networks. In order to provide professional training and social support for informed caregivers, we designed the Caregivers-to-Caregivers Training Programme (C2C) and performed a pilot study to assess its effect. METHODS: Caregivers of persons with mental disorders who participated in the C2C were asked to participate in a quasi-experimental study to assess their knowledge and skills development, self-care ability, trainer engagement, and training content. A total of 800 participants completed self-designed evaluation questionnaires and two open-ended questions to gather suggestions and feedback. Assessments were carried out at pretest (baseline), post-test, and at 2-month follow-up. Results were analyzed using one-way repeated measures analysis of variance (ANOVA) and pairwise comparison method. RESULTS: At post-test, 667 assessments were considered valid and 515 were deemed valid at 2-month follow-up. One-way repeated-measures ANOVA showed that the main effect of the scores on knowledge and skills development and self-care ability from baseline to 2-month follow-up was significant (p < .001). Results of pairwise comparison method showed that the scores on each item of knowledge and skills development and self-care ability at post-test and at 2-month follow up were higher than those at baseline (p < .001). The scores on items of trainer engagement and training content were all above average (4/5). The open-ended questions resulted in 678 comments indicating that participants gained significant support from other caregivers and healthcare professionals in the alliance and wanted more and continuously updated material. CONCLUSION: This study demonstrated that C2C effectively improved the development of caregivers' knowledge, skills, and their self-care ability. Available social support for caregivers was better than average, including professional support and peer support.

Assessing the feasibility, acceptability, and preliminary efficacy of a novel symptom management care delivery intervention for caregivers receiving home hospice care: The I-HoME protocol.

BACKGROUND: Terminally ill patients experience high symptom burden at the end of life (EoL), even when receiving hospice care. In the U.S., family caregivers play a critical role in managing symptoms experienced by patients receiving home hospice services. Yet, most caregivers don't receive sufficient support or formal training in symptom management. Therefore, providing additional visits and education to caregivers could potentially improve outcomes for both patient and caregiver. In response, we developed the Improving Home hospice Management of End-of-life issues through technology (I-HoME) intervention, a program designed for family caregivers of home hospice patients. This paper describes the intervention, study design, and protocol used to evaluate the intervention. METHODS: The I-HoME study is a pilot randomized controlled trial aimed at reducing patient symptom burden through weekly tele-visits and education videos to benefit the patient's family caregiver. One hundred caregivers will be randomized to hospice care with (n = 50) or without (n = 50) the I-HoME intervention. Primary outcomes include intervention feasibility (e.g., accrual, attrition, use of the intervention) and acceptability (e.g., caregivers' comfort accessing the tele-visits and satisfaction). We will also examine preliminary efficacy using validated patient symptom burden and caregiver outcome measures (i.e., burden, depression, anxiety, satisfaction). CONCLUSION: The trial is evaluating a novel symptom management intervention that supports caregivers of patients receiving home hospice services. The intervention employs a multi-pronged approach that provides needed services at a time when close contact and support is crucial. This research could lead to advances in how care gets delivered in the home hospice setting.

Caregiver education programme on intellectual and developmental disabilities: An acceptability and feasibility study in an academic medical setting.

BACKGROUND: Children and adolescents with intellectual and developmental disabilities (I/DD), including autism spectrum disorder, benefit from a variety of specialized interventions. However, there are barriers that impact families' ability to access such services for their children. While not intended as a replacement for individualized or group-based interventions, educational classes may be an option in providing supplemental resources and support to families of individuals with I/DD. This study was a programme evaluation that examined the feasibility and acceptability of a Caregiver Education Program that was created in an outpatient specialty clinic of an academic medical centre, designed to provide educational information on a variety of topics relevant to children and adolescents with I/DD (e.g., toilet training, understanding behaviour and managing anxiety). METHOD: The review included 1027 participants from 40 classes led by licensed clinicians, trainees, and/or experienced caregivers. Classes occurred approximately one time per month over the course of three-and-a-half years and targeted caregivers of children and adolescents with I/DD and community-based professionals in the field of I/DD. Participants were able to attend one or multiple classes, based on their interest in the given topic. Participants were asked to complete post-training surveys at the end of each session as part of ongoing programme evaluation. RESULTS: Participants reported a high level of satisfaction and increased knowledge as a result of participating in classes, and higher knowledge gained and higher satisfaction for in-person classes compared to virtual classes. CONCLUSIONS: This programme is one model of education delivery with high acceptability and feasibility, designed to support families and increase access to information beyond specialized interventions. Future directions include improving the model of programme data collection, examination of the programme's generalization to practice and to other communities, and an emphasis on culturally responsive curricula.

Use and Impact of Simulation in Family Caregiver Education: A Systematic Review.

BACKGROUND: Involving family caregivers in a team-based approach has become increasingly important. Simulation-based interventions in nursing have been effective. However, the effect of simulation on family caregiver education is not widely known and is limited. OBJECTIVE: This study aimed to describe the current state of simulation-based interventions in family caregivers of patients with chronic diseases. METHODS: This systematic review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The literature search was conducted in PubMed, CINAHL, PsycINFO, and Cochrane with a medical librarian's help. This review included quantitative, primary, peer-reviewed English-written research articles that reported outcomes for family caregivers. We focused on the data about purpose, design, setting, population, intervention characteristics, and outcomes. Before analyzing the selected studies, we evaluated the risk of bias using the revised Cochrane Risk-Of-Bias tool for randomized trials. RESULTS: Our search yielded 9 articles that met the inclusion criteria. The majority of the 9 articles analyzed were designed in a quasi-experimental design. In addition, most studies focused on certain diseases and used low-fidelity simulators. The simulation content mainly focused on technical simulations to help care for patients. Some simulations had a positive influence on family caregivers' knowledge, attitudes, and skills. CONCLUSIONS: We expect more simulation-based interventions for caregivers, especially those targeting diverse populations, using appropriate modalities and randomized control designs.