Caregivers' experiences on preterm infants' management in a tertiary care facility in Ghana: a qualitative exploratory study.

BACKGROUND: Preterm birth is a process that fundamentally alters parental or caregiver roles, particularly in the early weeks of childbirth. Caregiver experiences can be distressing due to struggles with an unfamiliar and potentially threatening environment of the Neonatal Intensive Care Unit (NICU). These experiences can affect the development of parenting or caregiving roles to a greater extent. Supporting caregivers of preterm infants through education and information sharing can significantly improve neonatal outcomes. This study sought to explore the experiences of caregivers with hospitalized preterm infants regarding the education and information they received from healthcare workers on the care of preterm infants. METHOD: An exploratory descriptive qualitative study that explored caregivers' experiences with the management of preterm infants hospitalized at the Level III Neonatal Intensive Care Unit (NICU) of a tertiary level facility with an annual delivery of almost 7500 and a bed capacity of 26. The study utilized a deductive approach and a purposive sampling technique to recruit 16 caregivers who participated in an in-depth interview using a piloted semi-structured interview guide. The interviews were audio-recorded, transcribed, and analyzed using thematic analysis. FINDINGS: The study identified three major themes, which were (1) preterm infant feeding and keeping infants warm, (2) routine procedures and activities at the NICU, and (3) preparation towards homecare after discharge. Seven (7) sub-themes were generated. Caregivers were satisfied with the education and information they received on infant feeding and keeping the infant ward. They also had adequate education that prepared them for home care of the preterm infant. Caregivers did not receive timely information and education on the health status of their infants and the care processes of the NICU. They felt they were left out as they were not involved in decision-making. Regarding the care of the preterm infant. The inadequate flow of information and use of medical terminologies were a great source of worry and frustration for participants. The study showed that although the NICU staff were willing to offer health education to caregivers, information giving and education were not structured and hence did not address all the needs of the caregivers. CONCLUSION: Healthcare providers caring for preterm infants include caregiver education in their routine NICU activities and procedures. These processes start from the period of admission till discharge. Their education sessions primarily focus on breastfeeding, keeping the infant warm and adequate preparation of caregivers for preterm infant home care. This notwithstanding there are gaps in caregiver education and information on routine procedures in the NICU as well as information on the health needs of the infant. Participants are not fully involved in the decision-making processes and the use of medical terminologies compound caregivers' frustrations and anxieties. It is important to develop structured educational programs tailored to address the information needs faced by caregivers to ensure optimal health outcomes for their preterm infants.

A parenting program delivered through existing community-based peer groups to improve early child development in Homabay and Busia Counties, Kenya: study protocol for a cluster-randomized controlled trial.

BACKGROUND: Poor early childhood development (ECD) is a major global health concern that is associated with various adverse outcomes over the lifecourse. Parenting interventions especially during the earliest years of life can benefit ECD. However, there is limited evidence from Kenya about the effectiveness of parenting interventions for improving ECD outcomes especially across rural disadvantaged communities. This paper describes the study protocol for an impact and implementation evaluation of a community-based group parenting program that aims to improve ECD in rural Kenya. METHODS: We will conduct a cluster-randomized controlled trial to determine the effectiveness of a parenting program for caregivers of young children in Homabay and Busia counties in Western Kenya. Sixty-four village clusters will be randomly assigned to either the parenting intervention arm or the waitlist control arm with stratification by county. In each village, 10 primary caregivers with a child aged 0-24 months will be enrolled. The parenting program will be delivered through existing peer groups within communities whereby caregivers will receive counseling and psychosocial support to enhance their parenting skills and wellbeing to in turn promote ECD. The intervention curriculum comprises 21 sessions targeting various nurturing care messages, including early learning, responsive caregiving, child nutrition, health, protection, and caregiver mental health. Group sessions are facilitated by a trained volunteer biweekly for a total of 11 months. The primary trial outcome is an overall measure of ECD using the Global Scales of Early Development long form version. Secondary outcomes include various caregiver outcomes (e.g., parenting practices, mental health) and other child outcomes (e.g., socioemotional development, dietary diversity). All outcomes will be assessed at baseline and endline. We will also conduct a qualitative implementation evaluation at endline and interview various stakeholders to assess program fidelity, quality, and sustainability. DISCUSSION: This trial will evaluate the effectiveness of a parenting intervention on ECD and caregiving outcomes and assess program implementation quality as delivered through existing community-based peer groups. This study will provide rigorous evidence that can be used to inform scale-up of this program model that leverages existing community social networks and resources for improving caregivers' parenting skills and promoting ECD in rural Kenya and other similar settings across LMICs. TRIAL REGISTRATION: ClinicalTrials.gov #NCT06165315. Registered on December 11, 2023.

Virtual Reality Combined With Psychoeducation to Improve Emotional Well-Being in Informal Caregivers of Alzheimer's Disease Patients: Rationale and Study Design of a Randomized Controlled Trial.

OBJECTIVES: Care for community-dwelling people with dementia is frequently delegated to relatives, who find themselves in the role of informal caregivers with no practical management knowledge. This situation exposes caregivers to increased risk for emotional wellbeing. The current study aims to test whether the integration of the efficacy of an immersive virtual reality (VR) experience into an online psychoeducational program impacts caregiver empathy and therefore emotional wellbeing. METHODS: One-hundred informal caregivers of mild-to-moderate Alzheimer's disease (AD) patients will be enrolled and randomly assigned to (i) an online psychoeducational program (control arm); or (ii) an online psychoeducational program integrated with VR (experimental arm). VR will consist of 360-degree videos involving the caregivers to an immersive experience of dementia symptoms from the patient's perspective. Before, after the intervention and after 2 months, all participants will complete validated clinical scales for caregiver burden and anxiety (primary outcomes) and sense of competence and dispositional empathy (secondary outcomes). A subsample of 50 participants will also undergo MRI exam, including structural and functional (resting-state and task-functional MRI [fMRI]) sequences. The fMRI task paradigm will use emotional stimuli to evaluate the neural correlate of empathy, by stressing its cognitive and affective components. The main outcome will be the change in the clinical assessment; the secondary outcome will be the change in brain connectivity of networks subserving the empathic and emotional functioning. RESULTS: We expect that the psychoeducational program will decrease anxiety and stress, enabling caregivers to perceive themselves capable of managing AD patients at home, educating them on symptom handling and boosting their cognitive empathy. In the experimental intervention, the VR-based experience will act as an add-on to psychoeducation, leading to greater improvement in the assessed clinical dimensions. VR should, in fact, enable a deeper understanding of disease symptoms and improve caregivers' cognitive empathy. We expect that the experimental intervention will result in deeper comprehension of disease symptoms and further strengthen caregivers' cognitive empathy. At the neural level, we expect to observe increased activation in circuits subserving cognitive empathy and decreased activation in circuits underlying affective empathy. CONCLUSIONS: To the best of our knowledge, this will be the first randomized controlled trial assessing the effect of combining psychoeducational interventions with VR-based experience in caregivers, and assessing both clinical and imaging outcomes. TRIAL REGISTRATION: Registered in ClinicalTrials.gov (NCT05780476).

The Effect of Simulation-Based Training on the Hand Hygiene Knowledge and Practices of Palliative Caregivers: A Double-Blind, Randomized, Controlled Single-Center Study.

This study aimed to investigate the effect of simulation-based training on hand hygiene knowledge and practices among palliative caregivers. The study was conducted with 60 caregivers in a palliative care clinic between December 2022 and September 2023. The participants were divided into two groups by simple randomization. The intervention and control groups received the same hand hygiene theoretical education and demonstration. The intervention group also received additional simulation-based hand hygiene practices recommended by the World Health Organization. A pretest-posttest design was used to assess hand hygiene knowledge and practices. Data were collected with personal information, hand hygiene knowledge, and hand hygiene practice forms. Analysis of covariance was performed to compare posttest scores between the groups. Simulation-based hand hygiene training programs offer an effective and feasible strategy to improve the hand hygiene knowledge and practices of caregivers. It should be integrated into clinical areas to increase palliative caregivers' hand hygiene knowledge and practices. Evidence-based practices can be improved by increasing randomized controlled studies on the effectiveness of simulation-based hand hygiene training for caregivers. Trial Registration: The study was registered at ClinicalTrials.gov with registration number NCT05848596.

The impact of empowerment theory-based health education on Alzheimer's disease informal caregivers: a randomized controlled trial.

Background: There is a lack of evidence regarding the effectiveness of empowerment healthy education for caregivers of Alzheimer's patients. Objective: To explore the effectiveness of the intervention of health education guided by empowerment theory on dementia knowledge, caregiving readiness, positive caregiving emotions, anxiety, and depression in informal Alzheimer's disease caregivers. Design: A single-blinded, randomized controlled trial. Setting: A teaching hospital in Tianjin, China. Participants: Eighty caregivers of Alzheimer's disease patients. Methods: Participants were recruited from the hospital and randomly assigned to either experimental or control group. The experimental group underwent a 12-weeks, one-to-one intervention of six session lasting 45-60 min each. The control group received conventional health education. Outcome measures included dementia knowledge, caregiver readiness (primary outcomes), positive caregiving emotions, anxiety, and depression (secondary outcomes). Results: After 12 weeks, the intervention group exhibited significantly higher levels of dementia knowledge, caregiver readiness, and positive caregiving emotions compared with the control group. Furthermore, levels of hospitalization-related anxiety and depression were lower in the intervention group. All study results of this study showed statistically significant differences (p < 0.05). Discussion: Empowerment theory-based health education appears to be an effective intervention for improving caregiver and readiness to care for caregivers of Alzheimer's disease individuals. The intervention may help reduce caregivers' anxiety and depression levels.

Development and Evaluation of a Web-Based Platform for Personalized Educational and Professional Assistance for Dementia Caregivers: Proposal for a Mixed Methods Study.

BACKGROUND: Alzheimer disease (AD) and AD-related dementia are prevalent concerns for aging populations. With a growing older adult population living in the United States, the number of people living with dementia is expected to grow, posing significant challenges for informal caregivers. The mental and physical burdens associated with caregiving highlight the importance of developing novel and effective resources to support caregivers. However, technology solutions designed to address their needs often face low adoption rates due to usability issues and a lack of contextual relevance. This study focuses on developing a web-based platform providing financial and legal planning information and education for dementia caregivers and evaluating the platform's usability and adoptability. OBJECTIVE: The goal of this project is to create a web-based platform that connects caregivers with personalized and easily accessible resources. This project involves industrial, academic, and community partners and focuses on two primary aims: (1) developing a digital platform using a Dementia Care Personalization Algorithm and assessing feasibility in a pilot group of caregivers, and (2) evaluating the acceptability and usability of the digital platform across different racial or ethnic populations. This work will aid in the development of technology-based interventions to reduce caregiver burden. METHODS: The phase I study follows an iterative Design Thinking approach, involving at least 25 dementia caregivers as a user feedback panel to assess the platform's functionality, aesthetics, information, and overall quality using the adapted Mobile Application Rating Scale. Phase II is a usability study with 300 dementia caregivers in Texas (100 African American, 100 Hispanic or Latinx, and 100 non-Hispanic White). Participants will use the digital platform for about 4 weeks and evaluate its usefulness and ease of use through the Technology Acceptance Survey. RESULTS: The study received funding from the National Institute on Aging on September 3, 2021. Ethical approval for phase I was obtained from the Texas A&M University Institutional Review Board on December 8, 2021, with data collection starting on January 1, 2022, and concluding on May 31, 2022. Phase I results were published on September 5, 2023, and April 17, 2024, respectively. On June 21, 2023, ethical approval for human subjects for phase II was granted, and participant recruitment began on July 1, 2023. CONCLUSIONS: Upon completing these aims, we expect to deliver a widely accessible digital platform tailored to assist dementia caregivers with financial and legal challenges by connecting them to personalized, contextually relevant information and resources in Texas. If successful, we plan to work with caregiving organizations to scale and sustain the platform, addressing the needs of the growing population living with dementia. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/64127.

Effect of a behavior change and hardware intervention on safe child feces management practices in rural Odisha, India: a cluster-randomized controlled trial.

BACKGROUND: Poor child feces management contributes to enteropathogen exposure and, consequently, is associated with diarrheal disease and negative impacts on child growth. Despite high latrine coverage, only 37% of Indian households safely dispose of their child's feces into a latrine or have the child use the latrine, with the lowest rate in the state of Odisha at 12%. We evaluated a behavior change and hardware intervention designed to improve caregiver safe disposal of child feces and child latrine use. METHODS: We conducted a cluster-randomized controlled trial among 74 villages in rural Odisha, India. Eligible villages previously participated in a water and sanitation infrastructure program. Following a baseline survey, half the villages were assigned to intervention and half to control. Caregivers of children < 5 years old from households with a latrine were eligible to participate. The intervention included five behavior change activities. Hardware was provided at the first activity, based on child age, to aid safe disposal and latrine training (wash basin and bucket with lid for children < 7 months old; latrine training mat platform with removable tray for children 7 to 48 months old). The primary outcome was caregiver reported 'safe disposal' as defined by the WHO/UNICEF Joint Monitoring Programme (JMP) which encompasses two behaviors: caregiver disposal of child's feces into a latrine and child latrine use. Safe disposal was measured four to six months after intervention delivery (endline). RESULTS: Endline analysis included 665 intervention caregivers (840 children) and 634 control caregivers (785 children). Prevalence of JMP-defined safe disposal was 1.16 times greater in the intervention arm compared to control (77.7% vs. 65.9%; prevalence ratio [PR] 1.16, 95% CI 1.04-1.29), with higher prevalence of caregiver safe disposal (18.6% vs. 13.6%; PR 1.46, 95% CI 1.12-1.92) but no significant difference in child latrine use (59.0% vs. 52.2%; PR 1.06, 95% CI 0.95-1.18). When restricted to children < 3 years old, JMP-defined safe disposal was 1.42 times greater (67.5% vs. 46.7%; PR 1.42 95% CI 1.21-1.67) with higher prevalence of both caregiver safe disposal (34.6% vs. 25.7%; PR 1.44, 95% CI 1.11-1.86) and child latrine use (32.9% vs. 20.9%; PR 1.41, 95% CI 1.08-1.83). CONCLUSIONS: The intervention increased JMP-defined safe disposal, with substantial improvements in both caregiver safe disposal and child latrine use among children < 3 years old. While future research is needed to demonstrate sustainability of these effects, our results suggest a potentially scalable intervention for improving child feces disposal and reducing disease. TRIAL REGISTRATION: This trial was retrospectively registered at ISRCTN15831099 on 18/02/2020, which was approximately two months after the first participant was recruited for the baseline survey on 02/12/2019.

A qualitative exploration to inform an oral health training for disability care workers in Burkina Faso.

AIM: To explore enablers and barriers to the creation of an oral health training for care workers at specialized centres for children with disabilities in Ouagadougou. DESIGN: This was a formative study informed by the Theoretical Domains Framework using qualitative methods. METHODS: Qualitative observations and 14 semi-structured interviews were conducted with care workers from six specialized centres for disability. RESULTS: Carer workers emphasized that a successful oral health training must account for available resources and competencies in each specific centre. Part of the training must be dedicated to oral hygiene targeted for people with disabilities and provide knowledge about risk factor management. Care workers must be empowered through the training with practical skills and tools to manage regular toothbrushing and identify oral health needs of their dependents. CONCLUSION: This study gathered valuable and unique perspectives about the roles of care workers of children with disabilities in Ouagadougou and underscores the need for improving access to oral health and care services for children with disabilities in low-resourced settings. IMPLICATIONS FOR PATIENT CARE: Teams planning oral health promotion activities in low resourced settings for vulnerable population groups can benefit from the methodology and results of this research for ensuring their interventions are appropriate and relevant. IMPACT: This is a unique field study conducted in a scarcely researched area of caregiving practices for children with disabilities in a low-income country, Burkina Faso. Results from the disability centre observations and interviews with local caregivers are of great value to any team planning health projects in similar low-resourced settings. Psychiatric and mental health nursing practices are highly context-dependent, thus using proposed qualitative methods can help to ensure that planned interventions are appropriate and relevant. PATIENT OR PUBLIC CONTRIBUTION: There was no patient contribution in this study.

Effects of a nurse-led motor function rehabilitation training program for patients with ischemic stroke and family caregivers: study protocol for a randomized controlled trial.

BACKGROUND: Both individuals and society bear a considerable burden from ischemic stroke (IS), not only do patients continue suffering from motor dysfunction after discharge from hospital, but their caregivers also undertake the principal responsibility of assisting them in reintegrating into the family and society. To better improve the IS patients' limb function and daily life activities, their caregivers should also be involved in the training of the motor function rehabilitation during the period transitioning from hospital back home. This study mainly aims to investigate the effects of a nurse-led training for IS patients and their family caregivers on the improvement of the patients' physical function and the burden of caregivers. METHODS/DESIGN: A randomized controlled trial with blind assessment will be conducted in hospitals and during the follow-ups at home. Fifty-eight pairs of adults diagnosed with ischemic stroke and their primary caregivers will be included. Participants will be randomly given with (1) a nurse-led, home-based motor rehabilitation training participated by caregivers (intervention group) or (2) routine self-care (control group). Both groups will receive assessment and health guidance on the day of discharge, and the intervention group will receive an additional home-based training program and supervision. These two groups will be followed up every week after discharge. The primary results are drawn from the evaluation of physical function and caregiver-related burden, and the secondary results derived from statistics of the modified Barthel index, stroke-specific quality of life, and National Institutes of Health Stroke Scale. Differences between the two groups will be measured by two-way repeated measures ANOVA, considering the data at baseline and at 1-week and 4-week follow-up after training. DISCUSSION: Results may provide novel and valuable information on the effects of this culturally appropriate, caregiver-involved, and home-based rehabilitation training on the physical function of IS patients and caregiver-related burden. TRIAL REGISTRATION: Chinese Clinical Trial Registry (chictr.org.cn) ChiCTR2300078798. Registered on December 19, 2023.

Enhancing Outcomes in Alzheimer's Disease: Exploring the Effects of a Diversified Rehabilitation Program Combined with Donepezil on Apathy, Cognitive Function, and Family Caregiver Burden.

BACKGROUND AND OBJECTIVE: Alzheimer's disease is a progressive neurodegenerative disorder characterized by cognitive decline, behavioral changes, and functional impairments. Apathy, a common symptom in Alzheimer's disease, refers to a lack of motivation, interest, and emotional responsiveness. It can significantly impact patients' quality of life and increase caregiver burden. This study aimed to determine the effects of a diversified rehabilitation program combined with donepezil on apathy, cognitive function, and family caregiver burden of Alzheimer's disease patients. METHODS: A total of 105 Alzheimer's disease patients treated at our hospital between January 2020 and January 2023 were selected and analyzed retrospectively. They were assigned to the control group (n = 50) or the observation group (n = 55). The two groups did not differ in terms of general data such as age and sex. All patients were treated with donepezil orally. The control group was given routine nursing, whereas the observation group was given a diversified rehabilitation program intervention, including cognitive training and emotional support. The Hasegawa's dementia scale, mini-mental state examination, and Montreal cognitive assessment scale were adopted to evaluate the cognitive function of the two groups before and after treatment. A caregiver burden scale, the Zarit Burden Interview (ZBI) and the Apathy Evaluation Scale Informant version (AES-I) were used to evaluate the caregiver burden and apathy of the two groups. RESULTS: A significantly higher overall response rate to treatment was found in the observation group (94.55%) than in the control group (80.00%) (p = 0.024). After treatment, scores on the Hasegawa's dementia scale, mini-mental state examination, and Montreal cognitive assessment scale of the two groups increased to varying degrees, with greater increases in the observation group than in the control group (p < 0.05). The ZBI and AES-I scores of the two groups decreased to different degrees after treatment, with greater decreases in the observation group than in the control group (p < 0.05). CONCLUSION: A diversified rehabilitation program combined with donepezil can substantially alleviate the apathy of Alzheimer's disease patients, improve their cognitive function, and reduce the burden on their families.

Febrile seizures: A clinical review and focus on caregiver education.

ABSTRACT: Febrile seizures are the most common seizure disorder in childhood. Most febrile seizures have a benign course and children have a good prognosis. However, febrile seizures are traumatizing events for a child's family or caregiver to witness. Appropriate caregiver education is crucial to ease anxiety. This article reviews the risk factors, clinical presentation, diagnostics, treatment, and prevention of febrile seizures in addition to providing a guideline for effective caregiver education and support.

Feasibility, acceptability, and effects of a web-delivered behavioral parent training intervention for rural parents of children with autism spectrum disorder: A protocol.

Caregivers of children with autism spectrum disorder (ASD) often report higher levels of stress and mental health issues. Support services and parent training programs may help buffer the effects of caring for a child with ASD. However, due to the national lack of trained ASD providers and disparity of ASD support resources available in rural areas, caregivers often go without support. A possible solution to reach caregivers in rural areas is web-based interventions. This paper describes an ongoing pilot study examining the feasibility, acceptability, and preliminary effects on caregiver well-being and disruptive child behaviors for a web-based parent training program (Attend Behavior) for caregivers of young children (ages 2-11 years old) with autism spectrum disorder (ASD) living in rural areas (trial registration NCT05554198). The intervention is available on the internet as well as a downloadable app for mobile phones. Participants will be invited to use the intervention program for 12-weeks. Prior to using the program, participants will be asked to take a baseline survey assessing depressive symptoms (PROMIS Depression Short Form-6a), caregiver stress (Parenting Stress Index-Short Form), child disruptive behaviors (Home Situations Questionnaire-ASD and Aberrant Behavior Checklist). After 12-weeks, participants will be asked to complete a post-intervention survey with the same measurement scales plus questions regarding intervention acceptability, appropriateness, and feasibility (Acceptability of Intervention, Intervention Appropriateness Measure, and the Feasibility of Intervention Measure). Participants are also invited to partake in a brief 1:1 interview with a study team member to give further feedback regarding the intervention. Study retention and participant app usage data will be examined. Information generated from this pilot study will be used to inform a future larger scale randomized control trial of Attend Behavior.

How do undergraduate nursing students learn to care for families and informal caregivers? A qualitative study with a grounded theory approach.

BACKGROUND: Nurses play a crucial role in caring for families of ill individuals in care, requiring high-quality relational and communication skills to care for them. Yet these skills remain underutilized, leading to reported issues of inadequate inclusion and communication. Education is crucial to enhance nurses' competencies in caring for families and informal caregivers. AIM: To explore the learning process of undergraduate nursing students to care for families and informal caregivers. DESIGN: Qualitative study with a grounded theory approach. SETTINGS: Bachelor's degree in nursing from two off-sites of a university and four local health units collaborating with the university in North Italy. PARTICIPANTS: 15 undergraduate nursing students, 10 nurse preceptors, and 10 nurse clinical teachers. METHODS: We adopted initial and theoretical sampling and conducted semi-structured interviews from December 2023 to January 2024, lasting 16 to 62 min. The interviews were audio-recorded, transcribed verbatim, and analysed through open, selective, and theoretical coding. RESULTS: We developed a theory of learning for undergraduate nursing students in caring for families and informal caregivers, comprising two themes, "Learning areas" and "Learning antecedents," and nine categories. Learning areas involve five stages of learning to care for families and informal caregivers and the most frequent opportunities to interact with families and informal caregivers. The five stages are "Seeing and considering families and informal caregivers", "Assessing the families' and informal caregivers' needs and resources", "Preparing for and planning intervention with families and informal caregivers", "Acting with families and informal caregivers", "Reflecting on the intervention with families and informal caregivers". Learning antecedents encompass student characteristics, interpersonal relationships, and the clinical training setting. CONCLUSIONS: In this study, we delineate a five-stage learning process for undergraduate nursing students to care for families and informal caregivers, influenced by individual, interpersonal, and contextual factors. We emphasised the importance of relational skill development, tailored learning experiences, and supportive mentorship in enhancing students' preparedness to engage with and support families in healthcare settings. The developed theory provides a foundational framework for designing educational interventions to optimise nursing students' capacities in this domain.

Co-producing a board game to learn and engage about dementia inequalities: First impacts on knowledge in the general population.

BACKGROUND: Receiving and accessing care after a diagnosis of dementia, both for the person and their carer, are fraught with inequalities. The aim of this public engagement activity was to co-produce a board game about dementia inequalities to facilitate learning, dialogue and educate about different barriers, and facilitators, to diagnosis and care and to test the game's impact on dementia knowledge with the general public. METHODS: Two virtual and two face-to-face workshops with people with dementia, unpaid carers, health and social care professionals and Third Sector representatives were held between October 2022 and June 2023. Virtual workshops involved discussions of inequalities and how a board game may feature inequalities. The first face-to-face workshop was split into the same activities, aided by outcomes from workshops 1 and 2. Workshop 4 attendees tested the prototype. The impact of the game on knowledge about dementia and inequalities was tested at a game play workshop in October 2023. RESULTS: Forty stakeholders attended four workshops. Workshops provided step-by-step thoughts on how the game could be designed or modified. The final game, prototype tested in workshop 4, consists of a one-sided, two-half board depicting the prediagnosis process (left half) and postdiagnosis process (right half). Fifty-two members of the general public participated in the game play workshop, which led to significant improvements in knowledge about dementia (p < .001) and inequalities (p < .001). DISCUSSION: The game can be used to improve knowledge about dementia inequalities for health and social care professionals, carers, people living with dementia, decision makers and the general public. PATIENT OR PUBLIC CONTRIBUTION: This engagement activity fully involved people with dementia, unpaid carers, health and social care professionals and Third Sector representatives throughout, with two unpaid carers as public advisers on the team.

The effects of a facilitator-enabled online multicomponent iSupport for dementia programme: A multicentre randomised controlled trial.

BACKGROUND: Multicomponent interventions with carers of people with dementia demonstrate positive effects on the health and quality of life for carers and care recipients. The World Health Organization's iSupport for Dementia is an evidence-based online psychoeducation programme for carers. However, the programme was mainly implemented as a self-learning tool which might have limited its positive effects on carers and care recipients. Evidence for online multicomponent interventions with carers that incorporates the iSupport programme remains unknown. OBJECTIVES: This study aimed to partner with health and social care organisations to evaluate the effects of a facilitator-enabled online multicomponent Chinese iSupport programme, which included psychoeducation using the iSupport programme, facilitator-enabled carer support groups and access to care services. DESIGN: A multicentre randomised controlled trial. SETTINGS AND PARTICIPANTS: Participants were family carers in Australia and greater China. We recruited participants to the study from 1st November 2021 to 30th June 2022. METHODS: The intervention group received the Chinese iSupport programme delivered online. The intervention lasted for 6 months. Our primary outcome was carers' quality of life. Our secondary outcomes were carers' self-efficacy, social support, distress reactions to changed behaviours, care recipients' frequency of changed behaviours, quality of life, unplanned hospital admissions, emergency department presentations and permanent admissions to nursing homes. The outcomes were measured at baseline (T0), 6 months (T1) and 9 months (T2). We applied a multivariate mixed effect linear regression model to capture the group effect, time effect and their interaction. RESULTS: In total, 266 eligible family carers agreed to participate and were randomly assigned to an intervention group (n = 131) or a usual care group (n = 135). Most carers were women with a mean age of 53 years. The intervention group showed a statistically significant higher score of mental-health-related quality of life (mean difference = 4.1, 95 % CI: 1.5, 6.8, p = 0.002), self-efficacy in controlling upsetting thoughts (mean difference = 7.1, 95 % CI: 2.2, 12.0, p = 0.005) and lower score of distress reactions to changed behaviours (mean difference = -0.1, 95 % CI: -0.3, -0.03, p = 0.012) than the usual care group at T1. CONCLUSION: The facilitator-enabled online multicomponent Chinese iSupport programme demonstrated positive effects for carers on mental health-related quality of life, controlling upsetting thoughts and distress reactions to changed behaviours of people with dementia. TRIAL REGISTRATION: This study is registered in the Australia New Zealand Clinical Trials Registry on 12th March 2021 (ACTRN12621000276853). TWEETABLE ABSTRACT: The facilitator-enabled online multicomponent Chinese iSupport programme improved family carers' mental health-related quality of life, control of upsetting thoughts and distress reactions to changed behaviours of people with dementia.

Structured training initiative (STI) for caregivers of children on peritoneal dialysis: a prospective study of the impact on the rate of peritonitis.

BACKGROUND: Training caregivers performing PD is an important measure to prevent peritonitis. A low literacy rate hinders training in low-resource settings. We designed a structured training initiative (STI) and objective structured assessment (OSA) using visual and kinesthetic resources with minimal use of written resources. We studied the impact of STIs on caregivers' knowledge and practical skills and the rate of peritonitis. METHODS: This prospective study conducted initial STI (iSTI) for caregivers of children initiating PD and retraining STI (rSTI) for those already on PD. OSA was administered after completion of training, and those scoring < 95% were retrained. Re-assessment was done at 3, 6, and 12 months, and those who scored < 95% underwent re-training. The rate of PD peritonitis and the time to first peritonitis were compared between the STI group and the cohort on PD in our center who received standard training before STI (controls). RESULTS: Caregivers of 40 children were included. The median duration of iSTI and rSTI was 19.5 (18, 20) and 9 (9, 9.5) hrs, and the OSA scores were 97% (97%, 98%) and 96% (96%, 98%), respectively. Only 5% required retraining. There was a significant reduction in the rate of PD peritonitis (0.29 vs. 0.69 episodes/patient-year; p < 0.001) and longer time to peritonitis (189 vs. 69 days; p < 0.001) in the STI group when compared to the controls (n = 32). CONCLUSIONS: STI was effective in training caregivers for peritoneal dialysis. There was a reduction in the rate of peritonitis and a longer time to first peritonitis in the STI cohort.

Common practices of Speech and language pathologists about partner oriented training to treat aphasia.

Objective: To find the common practices among speech language pathologists regarding partner-oriented training for aphasic patients. METHODS: The exploratory, qualitative study was conducted at Riphah International University, Lahore, Pakistan, from March 1 to May 31, 2021, and comprised speech language pathologists working with aphasic patients for at least 5 years in Lahore, Karachi and Islamabad. Data was collected using a structured interview guide that were conducted online. The recorded interviews were transcribed, and the data was subjected to thematic analysis. RESULTS: Of the 10 subjects, 6(60%) were females and 4(40%) were males. Overall, 6(60%) subjects had professional experience of >10 years. Thematic analysis showed that most of the speech language pathologists used traditional approaches for aphasia treatment, and counselling of patient's caregiver was done. However, there was no formal tool in Urdu language to provide basic communication strategies for the patient's caregivers or their communication partners. The participants recommended efforts to develop such a tool. Conclusion: There was found a dire need of communication partner training (CPT) programme for aphasia patients and their partners with appropriate linguistic and cultural norms to facilitate them with the aim of improving their quality of life.

Feasibility study of a parent-driven intervention for youth with Down syndrome.

BACKGROUND: Children with Down syndrome present with behavioural and emotional difficulties, including noncompliance, rule-breaking, emotion dysregulation and delays in executive functioning. Few behavioural interventions have been designed specifically for children with Down syndrome. The Research Units in Behavioral Intervention (RUBI) Parent Training for Disruptive Behaviors is a structured empirically supported parent training programme developed for caregivers of children with autism. This feasibility trial explored the feasibility and acceptability of an abbreviated RUBI intervention with caregivers of children with Down syndrome and identified promising outcome measures to target in future larger clinical trials. METHOD: A double-blind randomised feasibility pilot clinical trial allocated participants to a behavioural intervention (BEH) or educational (EDU) group. BEH and EDU consisted of five individual sessions over the course of 5 to 8 weeks. Measures were administered to 20 caregivers and their youth with Down syndrome at three time points. RESULTS: Both BEH and EDU were rated as feasible with high parental adherence and acceptable with high treatment satisfaction. Both BEH and EDU demonstrated decreased externalising behaviours, irritability and hyperactivity and improved behavioural regulation in executive functioning over time. No impact was noted on caregiver functioning. CONCLUSION: The feasibility trial has strong findings regarding feasibility and satisfaction and has promising findings regarding the selection of measures for future trials testing an adapted RUBI programme and an education programme to reduce behavioural challenges in children with Down syndrome. Larger scale clinical trials are needed to confirm promising findings of these feasible treatments.

"This can certainly work ": stakeholder perspectives of the feasibility of a caregiver-led training program for caregivers of children with cerebral palsy in a rural setting in Malawi.

Introduction: Caregiver training is a key component of rehabilitation for children with complex lifelong disabilities such as cerebral palsy. However critical shortages of therapists in low- and middle-income countries like Malawi, reduce access to therapy. Introducing expert caregivers to assist with the provision of basic training on the condition for fellow caregivers offers a potential solution. However, there is a paucity of evidence regarding the implementation of such strategies in low-resource settings. The aim of this study was to explore perspectives of stakeholders regarding the feasibility of implementing a caregiver-led and delivered training program for caregivers of children with cerebral palsy in Malawi. Methods: Over 5 days in January 2023, a caregiver-led training program, the "Malamulele Onward Carer-to-Carer Training Program," was conducted in Blantyre, Malawi. A South African master trainer traveled to Malawi and delivered the program to potential stakeholders including caregivers of children with cerebral palsy; physiotherapists; and community-based organization representatives. Stakeholder perspectives regarding the acceptability, demand, practicality and adaptation of the program were obtained through a combination of focus group discussions, in-depth interviews, and daily field notes. Data from the focus group discussions and in-depth interviews were analyzed using thematic analysis. Results: The caregiver-led training program was deemed acceptable despite two areas identified as potential areas of concern; that the expert caregivers may cross practice boundaries and that their fellow caregivers may look down upon them. A demand for this program was expressed because of perceived relative advantages and relevance to caregiver needs. Participants indicated that the intervention could be easily delivered using local materials, absorbed and supported by existing community structures. Conclusion: A caregiver-led training program offers an innovative way of supporting caregivers of children with complex disabilities such as cerebral palsy in low-resource settings. The stakeholder engagement demonstrated the positive perspectives of all stakeholders. The areas for modification and adaptation highlighted by the stakeholders will be useful in strengthening the implementation of the program in Malawi.