Healthy Outcomes through Peer Educators: Feasibility of a peer support diabetes prevention programme for African-American grandmother caregivers.

AIM: To assess the protocol feasibility and intervention acceptability of a community-based, peer support diabetes prevention programme (DPP) for African-American (AA) grandmother caregivers at risk for diabetes. MATERIALS AND METHODS: Grandmother caregivers were randomized in a 2:1 ratio to DPP (active comparator) or DPP plus HOPE (Healthy Outcomes through Peer Educators; intervention). DPP + HOPE incorporated support from a peer educator who met with participants in person or by telephone every week during the 1-year intervention. Outcomes included: (1) recruitment rates, outcome assessment, and participation adherence rates assessed quantitatively; and (2) acceptability of the programme assessed through end-of-programme focus groups. RESULTS: We successfully consented and enrolled 78% (n = 35) of the 45 AA grandmothers screened for eligibility. Eighty percent of participants (aged 64.4 ± 5.7 years) were retained up to Week 48 (74% for DPP [n = 17] and 92% for DPP + HOPE [n = 11]). All grandmothers identified social support, neighbourhood safety, and access to grocery stores as influences on their health behaviours. At Month 12, the active comparator (DPP) group and the intervention group (DPP + HOPE) had a mean change in body weight from baseline of -3.5 ± 5.5 (-0.68, -6.29) kg and - 4.4 ± 5.7 (-0.59, -8.2) kg, respectively. CONCLUSIONS: This viable study met the aim of educating and equipping AA grandmothers with the practical and sustained support needed to work toward better health for themselves and their grandchildren, who may be at risk for diabetes. The intervention was both feasible and acceptable to participating grandmothers and their organizations.

A review of family caregiving intervention trials in oncology.

This article contains a review of literature published from 2010 to 2016 on family caregiving in oncology. An analysis of 810 citations resulted in 50 randomized trials. These trials describe the need to prepare family caregivers for the complex role they play in cancer care. Several studies have demonstrated improved quality of life for family caregivers and improved emotional support from interventions. Several studies addressed communication and relational intimacy, which are key concerns. An additional focus of these trials was in the area of caregiving tasks and ways to diminish the burden of caregiving and preparedness for this role. Further research is needed in this area given the shift to outpatient care and as family caregivers become the primary providers of care. Future research should include expanding tested models of family caregiver support in clinical practice and in diverse populations. CA Cancer J Clin 2017. © 2017 American Cancer Society. CA Cancer J Clin 2017;67:318-325. © 2017 American Cancer Society.

Reducing ambulatory central line-associated bloodstream infections: A family-centered approach.

BACKGROUND: Ambulatory central line-associated bloodstream infections (CLABSIs) cause significant morbidity and mortality, especially in pediatric oncology. Few studies have had interventions directed toward caregivers managing central lines (CL) at home to reduce ambulatory CLABSI rates. We aimed to reduce and sustain our ambulatory CLABSI rate by 25% within 3 years of the start of a quality improvement intervention. PROCEDURE: Plan-do-study-act cycles were implemented beginning April 2016. The main intervention was a family-centered CL care skill development curriculum for external CLs. Training began upon hospital CL insertion, followed by an ambulatory teach-back program to achieve home caregiver CL care independence. Other changes included: standardizing ambulatory nurse CL care practice (audits, a train the nurse trainer process, and workshops for independent home care agencies); developing aids for trainers and caregivers; providing supplies for clean surfaces; wide dissemination of the program; and minimizing opportunities of CLABSI (e.g., standardizing timing of CL removal). The outcome measure was the ambulatory CLABSI rate (excluding mucosal barrier injury laboratory-confirmed bloodstream infection), compared pre intervention (January 2015 to March 2016) to post intervention, including 2 years of sustainability (April 2016 to June 2023), using statistical process control charts. We estimated the total number of CLABSI and associated healthcare charges prevented. RESULTS: The ambulatory CLABSI rate decreased by 52% from 0.25 to 0.12 per 1000 CL days post intervention, achieved within 27 months; 117 CLABSI were prevented, with $4.2 million hospital charges and 702 hospital days avoided. CONCLUSIONS: Focusing efforts on home caregivers CL care may lead to reduction in pediatric oncology ambulatory CLABSI rates.

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 process evaluation of the NIDUS-Professional dementia training intervention for UK homecare workers.

INTRODUCTION: This process evaluation was conducted in parallel to the randomised controlled feasibility trial of NIDUS-Professional, a manualised remote dementia training intervention for homecare workers (HCWs), delivered alongside an individualised intervention for clients living with dementia and their family carers (NIDUS-Family). The process evaluation reports on: (i) intervention reach, dose and fidelity; (ii) contexts influencing agency engagement and (iii) alignment of findings with theoretical assumptions about how the intervention might produce change. METHODS: We report proportions of eligible HCWs receiving any intervention (reach), number of sessions attended (dose; attending ≥4/6 main sessions was predefined as adhering), intervention fidelity and adherence of clients and carers to NIDUS-Family (attending all 6-8 planned sessions). We interviewed HCWs, managers, family carers and facilitators. We integrated and thematically analysed, at the homecare agency level, qualitative interview and intervention recording data. RESULTS: 32/141 (23%) of eligible HCWs and 7/42 (17%) of family carers received any intervention; most who did adhered to the intervention (89% and 71%). Intervention fidelity was high. We analysed interviews with 20/44 HCWs, 3/4 managers and 3/7 family carers, as well as intervention recordings involving 32/44 HCWs. All agencies reported structural challenges in supporting intervention delivery. Agencies with greater management buy-in had higher dose and reach. HCWs valued NIDUS-Professional for enabling group reflection and peer support, providing practical, actionable care strategies and increasing their confidence as practitioners. CONCLUSION: NIDUS-Professional was valued by HCWs. Agency management, culture and priorities were key barriers to implementation; we discuss how to address these in a future trial.

Interventions with pregnant women, new mothers and other primary caregivers for preventing early childhood caries.

BACKGROUND: Dental caries, a common chronic disease of childhood, is associated with adverse health and economic consequences for infants and their families. Socioeconomically disadvantaged children have a higher risk of early childhood caries (ECC). This review updates one published in 2019. OBJECTIVES: To assess the effects of interventions undertaken with pregnant women, new mothers or other primary caregivers of infants in the first year of life, for preventing ECC (from birth to six years). SEARCH METHODS: We searched Cochrane Oral Health's Trials Register, Cochrane Pregnancy and Childbirth's Trials Register, CENTRAL, MEDLINE (Ovid), Embase (Ovid), CINAHL EBSCO, the US National Institutes of Health Ongoing Trials Register (clinicaltrials.gov) and WHO International Clinical Trials Registry Platform (apps.who.int/trialsearch). The latest searches were run on 3 January, 2023. SELECTION CRITERIA: Randomised controlled trials (RCTs) comparing interventions with pregnant women, or new mothers and other primary caregivers of infants in the first year of life, against standard care, placebo or another intervention, reporting on a primary outcome: caries presence in primary teeth, dmfs (decayed, missing, filled primary surfaces index), or dmft (decayed, missing, filled teeth index), in children up to six years of age. Intervention types include clinical, oral health promotion/education (hygiene education, breastfeeding and other dietary advice) and policy or service. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed study eligibility, extracted data, assessed risk of bias, and assessed certainty of evidence (GRADE). MAIN RESULTS: We included 23 RCTs (5 cluster-randomised), involving 25,953 caregivers (mainly mothers) and their children. Fifteen trials assessed oral health education/promotion interventions against standard care. Six trials assessed a clinical intervention for mother dentition, against placebo, or a different type of clinical intervention. Two trials assessed oral health/education promotion plus clinical intervention (for mother's dentition) against standard care. At most, five trials (maximum of 1326 children and 130 mothers) contributed data to any comparison. Enamel-only caries were included in the diagnosis of caries in some studies. For many trials, the risk of bias was unclear due to lack of methodological details reported. In thirteen trials, participants were socioeconomically disadvantaged. No trial indicated receiving funding that was likely to have influenced their results. Oral health education/promotion interventions Child diet and feeding practice advice versus standard care: We observed a probable 15 per cent reduced risk of caries presence in primary teeth with the intervention (RR 0.85, 95% CI 0.75 to 0.97; 3 trials; 782 participants; moderate-certainty evidence), and there may be a slightly lower mean dmfs (MD -0.29, 95% CI -0.58 to 0; 2 trials; 757 participants; low-certainty evidence); however, the evidence is very uncertain regarding the difference between groups in mean dmft (MD -0.90, 95% CI -1.85 to 0.05; 1 trial; 340 participants; very low-certainty evidence). Breastfeeding promotion and support versus standard care: We observed little or no difference between groups in the risk of caries presence in primary teeth (RR 0.96, 95% CI 0.89 to 1.03; 2 trials; 1148 participants; low-certainty evidence) and in mean dmft (MD -0.12, 95% CI -0.59 to 0.36; 2 trials; 652 participants; low-certainty evidence). dmfs was not reported. Child diet advice compared with standard care: We are very uncertain about the effect on the risk of caries presence in primary teeth (RR 1.08, 95% CI 0.34 to 3.37; 1 trial; 148 participants; very low-certainty evidence). dmfs and dmft were not reported. Oral hygiene, child diet and feeding practice advice versus standard care: The evidence is very uncertain about the effect on the risk of caries presence in primary teeth (RR 0.73, 95% CI 0.50 to 1.07; 5 trials; 1326 participants; very low-certainty evidence) and there maybe little to no difference in mean dmfs (MD -0.87, 95% CI -2.18 to 0.43; 2 trials; 657 participants; low-certainty evidence) and mean dmft (MD -0.30, 95% CI -0.96 to 0.36; 1 trial; 187 participants; low-certainty evidence). High-dose versus low-dose vitamin D supplementation during pregnancy: We are very uncertain about the effect on risk of caries presence in primary teeth (RR 0.99, 95% CI 0.70 to 1.41; 1 trial; 496 participants; very low-certainty evidence). dmfs and dmft were not reported. Clinical interventions (for mother dentition) Chlorhexidine (CHX, a commonly prescribed antiseptic agent) or iodine-NaF application and prophylaxis versus placebo: We are very uncertain regarding the difference in risk of caries presence in primary teeth between antimicrobial and placebo treatment for mother dentition (RR 0.97, 95% CI 0.80 to 1.19; 3 trials; 479 participants; very low-certainty evidence). No trial reported dmfs or dmft. Xylitol compared with CHX antimicrobial treatment: We are very uncertain about the effect on caries presence in primary teeth (RR 0.62, 95% CI 0.27 to 1.39; 1 trial, 96 participants; very low-certainty evidence), but we observed there may be a lower mean dmft with xylitol (MD -2.39; 95% CI -4.10 to -0.68; 1 trial, 113 participants; low-certainty evidence). No trial reported dmfs. Oral health education/promotion plus clinical interventions (for mother dentition) Diet and feeding practice advice for infants and young children plus basic dental care for mothers compared with standard care: We are very uncertain about the effect on risk of caries presence in primary teeth (RR 0.44, 95% CI 0.05 to 3.95; 2 trials, 324 participants; very low-certainty evidence) or on mean dmft (1 study, not estimable). No trial reported dmfs. No trials evaluated policy or health service interventions. AUTHORS' CONCLUSIONS: There is moderate-certainty evidence that providing advice on diet and feeding to pregnant women, mothers or other caregivers with children up to the age of one year probably leads to a slightly reduced risk of early childhood caries (ECC). The remaining evidence is low to very-low certainty and is insufficient for determining which, if any, other intervention types and features may be effective for preventing ECC, and in which settings. Large, high-quality RCTs of oral health education/promotion, clinical, and policy and service access interventions, are warranted to determine the effects and relative effects of different interventions and inform practice. We have identified 13 ongoing studies. Future studies should consider if and how effects are modified by intervention features and participant characteristics (including socioeconomic status).

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.

Designing a virtual course for essential care partners (ECPs) in long-term care (LTC): a pre-implementation study.

Objectives: We describe our co-design process aimed at supporting the reintegration of essential care partners into long-term care homes during the COVID-19 pandemic.Methods: More specifically, using a co-design process, we describe the pre-design, generative, and evaluative phases of developing a virtual infection prevention and control course for essential care partners at our partnering long-term care home. For the evaluative phase, we also provide an overview of our findings from interviews conducted with essential care partners on the expected barriers and facilitators associated with this virtual course.Results: Results from these interviews indicated that the virtual course was viewed as comprehensive, detailed, engaging, refreshing, and reliable, and that its successful implementation would require appropriate resources and support to ensure its sustainability and sustainment. Findings from this study provide guidance for the post-design phase of our co-design process.Conclusion: Our careful documentation of our co-design process also facilitates its replication for other technological interventions and in different healthcare settings. Limitations of the present study and implications for co-designing in the context of emergent public health emergencies are explored in the discussion.

Patient Learning Pathway: Identifying Patient Competencies in Teledermatology for Effective Management of Dermatological Conditions.

BACKGROUND: Dermatology consultations in Québec, Canada, face accessibility challenges, with most dermatologists concentrated in urban areas. Teledermatology, offering remote diagnosis and treatment, holds promise in overcoming these limitations. However, concerns regarding patient-doctor relationships and logistical issues exist. OBJECTIVES: This article aims to introduce a dermatology patient learning pathway (PLP) developed by the Centre of Excellence on Partnership with Patients and the Public (CEPPP), focusing on knowledge, abilities, and skills mobilized by patients and their loved ones at key moments of the life course with an illness, as well as emerging educational needs. METHODS: The PLP development was co-developed with dermatology patient and caregiver partners, stakeholders, and the CEPPP team. The process encompassed stakeholder engagement, exploration, recruitment of patient and caregiver partners, co-development of the PLP draft, and validation through consensus building. RESULTS: The PLP methodology led to the creation of 44 learning objectives, comprising a total of 107 subobjectives. These objectives were organized into 8 phases of the patient life course with a dermatological condition: (1) prevention and predisposition; (2) discovery, self-examination, or observation of a change; (3) first consultation; (4) wandering; (5) consultation with a dermatologist; (6) diagnosis; (7) treatments; and (8) living with it. CONCLUSIONS: The dermatology PLP serves as a resource outlining patient competency across different stages of managing a dermatological condition throughout their life course. In the context of teledermatology, the PLP might facilitate patient and caregiver engagement by helping select appropriate information and tools to support active participation in care.

Feasibility, Acceptability, and Usefulness of a Screening Tool for Caregiver Learning Differences in Early Childhood Home Visiting: Staff and Caregiver Perspectives.

Early childhood home visiting programs are well positioned to improve equity and reduce health disparities for families headed by caregivers with intellectual disabilities and other learning differences. Early identification of learning differences through screening may help home visiting staff tailor services and thus improve family engagement and outcomes. Using a mixed methods design, this study assessed potential determinants and outcomes related to implementation of a screening tool for learning differences adapted for the home visiting context. Participants were six home visiting staff and nine caregivers from multiple home visiting programs in one state. Staff completed surveys at enrollment and each time they conducted a screen with a caregiver. Staff also completed semi-structured interviews after conducting screens with at least two caregivers. Caregivers completed semi-structured interviews after taking part in a screen. At study enrollment, staff felt it was important to know if caregivers had learning differences, yet some believed caregivers would not like being asked about them. Survey and interview data aligned with theoretical determinants of implementation success, including staff competencies related to screening (e.g., knowledge, skills), perceived fit of screening with staff role and organizational context, and beliefs that the screening would improve engagement of caregivers and service delivery. Staff perceived the tool to be acceptable, feasible, and useful, although some acknowledged that caregivers might feel uncomfortable if the tool was not used carefully. Overall, caregivers found the tool to be acceptable and most believed it was helpful for the home visitor to have information about their learning experiences and needs. Findings lend initial support for the use of an adapted screening tool to identify potential learning differences.

Effect of Education on Symptom Management and Control in Cancer Patients Receiving Palliative Care.

OBJECTIVE: This study aims to investigate the effect of an educational intervention on cancer patients receiving palliative care and their caregivers concerning symptom management and family needs. METHODS: This study involved 120 participants-60 cancer patients and their respective caregivers-divided into intervention and control groups. Over a 2-week period, the intervention group received a comprehensive educational program focusing on symptom management, while the control group did not receive any educational intervention. The Edmonton Symptom Assessment System (ESAS) and Palliative Performance Scale (PPS) were used to assess patients' symptoms, their intensity, and performance, while the Family Need Scale (FNS) was utilized to evaluate caregivers' needs. These assessments were conducted at the beginning and end of the study. Primary outcomes focused on symptom assessment using ESAS and PPS, along with evaluating caregivers' needs through FNS. Secondary outcomes involved assessing participant satisfaction with the intervention. RESULTS: At the end of the study, comparing initial and second evaluations, both ESAS and PPS scores significantly increased in the intervention and control groups (p = .003, p = .002, respectively). Additionally, a statistically significant decrease in the severity of symptoms, except for lethargy/hypokinesis, was observed in the intervention group compared to the control group. The FNS scale indicated that family needs satisfaction was higher in the intervention group compared to the control group. The data obtained demonstrated that there was a reduction the pain, fatigue, depression, anxiety, drowsiness, and shortness of breath levels in the intervention group compared to the control group, but there was no significant difference other than these symptoms. CONCLUSIONS: The educational intervention positively impacted symptom management and family needs. Optimizing symptom control would greatly benefit palliative care patients and their caregivers.

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.

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.

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.

A qualitative enquiry into the challenging roles of caregivers caring for children with Autism Spectrum Disorders in Ghana.

BACKGROUND: Autism Spectrum Disorder (ASD) is a condition commonly characterized by challenges with social interaction, repetitive atypical behaviour, and restricted interest. It is estimated that about 1 in 160 children has ASD. Caring for children with ASD is challenging for many parents or caregivers. OBJECTIVES: The study aims at exploring the challenges experienced by caregivers of children with ASD. METHODS: A qualitative phenomenological study was employed using an exploratory descriptive research design. A total of 10 participants were recruited in this study using a purposive sampling technique. Data were analysed using content analysis procedures. RESULT: Caregivers of children with ASD face social, financial, and emotional challenges, challenges in accessing health care, education and training of their children in mainstream school settings. CONCLUSION: The numerous challenges have implications for the quality of life of the caregivers and their children. The financial challenges and inaccessibility of specialist health services have serious implications for the continuous medical care and monitoring of children with ASD. The challenges in education and training of children with ASD has negative consequences for enrolment and retention of children with ASD in mainstream school settings.

Digital education-supported telehealth intervention in mothers of children with tracheostomy: A quasi-experimental study.

PURPOSE: The burden of care is high for parents of children with special care needs. Mothers need to be supported in home care to reduce the burden of care. This study aimed to determine the effects of providing digital education-supported telehealth application to mothers of children with tracheostomy receiving home care on the development of complications, hospital admission, care burden, and knowledge level of mothers. DESIGN AND METHODS: A one-group quasi-experimental, pretest-posttest study. The study was conducted with mothers of children with tracheostomy in the pediatric pulmonology outpatient clinic of a university hospital (n = 37). Digital education-supported telehealth application was provided to mothers. The digitally assisted education intervention lasted 6 weeks. Data were collected using the Child and Mother Identification Form, Complication Development Follow-up Form, Hospital Admission Follow-up Form, Caregiver Burden Scale (CBS), and Tracheostomy Care Knowledge Evaluation Questionnaire. The data were collected at three time points: before, immediately after, and 3 months after the education. For data analysis, repeated-measures analysis of variance and the Shapiro-Wilk, Friedman's, and Cochran's Q tests were used. RESULTS: In the study, 51% of the mothers were aged between 31 and 40 years; 56% of children were male and 37% were aged ≤3 years. A total of 62% of children aged ≥25 months received respiratory support through home care with tracheostomy and mechanical ventilator. There was no significant difference between the mean number of complications (p = 0.286) and number of hospital admissions (p = 0.079) in the pretest, posttest, and follow-up measurements. The mean CBS score of the mothers decreased in the pretest (36.08 ± 12.04), posttest (33.27 ± 9.58), and follow-up (32.76 ± 11.18) measurements; however, there was no significant difference (p = 0.058). The mean Tracheostomy Care Knowledge Level posttest (13.73 ± 1.28) and follow-up (13.97 ± 1.14) scores increased significantly compared with the pretest (12.14 ± 1.55) scores (p < 0.001). CONCLUSIONS: The digital education-supported telehealth application provided to mothers reduced their care burden and increased their knowledge level. There was no change in the number of complications and hospital admissions. PRACTICE IMPLICATIONS: Digital education-supported telehealth intervention, applied to parents of children requiring special care, is an effective and easy-to-access nursing intervention in reducing the burden of care.

Cultural adaptation of an intervention for caregivers of young autistic children: Community members' perspectives.

Caregivers of autistic children in low-to-middle-income countries experience many barriers to access resources to support their child's development. Caregiver training is considered an evidence-based practice and may be a cost-effective way to support caregivers of autistic children in such settings. This study focuses on the cultural adaptation of Parents Taking Action (PTA; Magaña et al., Family Process, 56, 57-74, 2017) to support caregivers of autistic children in Paraguay. We conducted focus groups and individual interviews with 28 caregivers, autistic individuals, and professionals in Paraguay to understand caregivers' needs and to explore needed cultural adaptations of PTA to achieve contextual fit. Participants identified caregivers' need for accurate and reliable information, strategies to support children's growth, and emotional support and strategies to manage stress. Additionally, participants provided recommendations for adapting PTA considering the dimensions within the Cultural Adaptation Checklist (Lee et al., International Journal of Developmental Disabilities, 2023). This study is the first step in the iterative process of culturally adapting an intervention and the process described in this study may be appropriate for culturally adapting other 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.

Effectiveness of a health education program for people with dementia and their family caregivers: An intervention by nurse practitioners.

PURPOSE: This study assesses the effectiveness of a health education program on caregiving outcomes for people with dementia and their families. METHODS: This quasi-experimental study involved 250 people with dementia and their family caregivers. Behavioral problems in people with dementia were assessed using the Chinese version of the Cohen-Mansfield Agitation Inventory-community form. Family caregiver outcomes were measured using the Agitation Management Self-Efficacy Scale, Caregiver Preparedness Scale, Competence Scale, and Community Resource Awareness and Utilization Assessment. RESULTS: Following the intervention, the experimental group demonstrated significant improvements in terms of self-efficacy, preparedness, competence, and awareness and utilization of community resources among family caregivers. Additionally, the experimental group exhibited lower levels of behavioral problems among people with dementia. CONCLUSIONS: This study helped improve caregiving outcomes for people with dementia and their family caregivers. Therefore, outpatient healthcare providers can utilize these findings to enhance care for this population.

Function-Focused Care for Cognitive Impairment Training Among Formal Caregivers in Long-Term Care Facilities in Taiwan: A Cluster Randomized Controlled Trial.

PURPOSE: To examine behavior changes among formal caregivers in Taiwanese long-term care facilities (LTCFs) after receiving training in function-focused care for cognitive impairment (FFC-CI). METHOD: The current study was a clustered randomized controlled trial. Formal caregivers (i.e., RNs and nursing assistants) (N = 98) from four LTCFs were randomly assigned to experimental or control groups. Training was based on four components of FFC-CI. Data were collected four times within 9 months using five observational outcome measurements: Self-Efficacy for Restorative Care (SERCS), Outcome Expectations for Restorative Care Scale (OERCS), Restorative Care Knowledge Scale (RCKS), Restorative Care Behavior Checklist (RCBC), and Job Attitude Scale (JAS). RESULTS: Statistically significant changes were noted in each activity of restorative care behavior among the four observational measurements. Results also indicated that job satisfaction was a statistically significant main effect for the experimental group; however, SERCS, OERCS, and RCKS scores were not statistically significant. CONCLUSION: To eliminate gaps between translating research outcomes to clinical practice, this study applied a theory-based caring model for caregivers to improve knowledge and skills in caring for older adults with dementia. Caregivers who received training in FFC-CI not only had higher job satisfaction but could also provide specific FFC activities for residents during their daily care. [Journal of Gerontological Nursing, 50(7), 42-50.].