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.

Evaluating the combination of in-person and electronic social networking services for family caregivers of stroke survivors: A quasi-experimental analysis.

INTRODUCTION: The effectiveness of health interventions delivered via a combination of in-person and electronic social networking services for caregivers of stroke survivors remains uncertain. This study evaluates the feasibility of implementing educational and peer support programs for these caregivers through such platforms. DESIGN: Quasi-experimental design. METHODS: This study included 105 caregiver-survivor dyads, with 54 dyads allocated to the intervention group and the remaining 51 to the control group. The LINE intervention comprised a combination of in-person and electronic social networking services including stroke and rehabilitation education, problem-solving skills training, long-term care information support, and 24-h peer and professional support for caregivers. The outcomes were assessed at baseline, after 1 month, and after 3 months, and encompassed caregivers' care burden, depressive symptoms, perceived social support, and quality of life, as well as the rehabilitation adherence and depressive symptoms of stroke survivors. Generalized estimating equations were used to examine group differences. The data were collected between August 2021 and October 2022. RESULTS: The average age of the caregivers was 48.3 years. Caregivers in the intervention group reported reduced care burdens and enhanced perceptions of social support and quality of life as compared to those in the control group. Additionally, stroke survivors in the intervention group were less likely to exhibit high-risk depressive symptoms. CONCLUSION: Delivering a stroke caregiver support intervention via in-person and electronic social networking services, such as LINE, effectively reduced the care burden for caregivers of stroke survivors. Additionally, it enhanced caregivers' perceived social support and quality of life. CLINICAL RELEVANCE: This study demonstrated that caregiver education and peer support programs administered through a combination of in-person and electronic social networking services can serve as an effective support system for the psychosocial health of stroke caregivers. These findings support the integration of such interventions into standard clinical practice by healthcare providers or governmental bodies.

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.

Recognizing the Unseen: Enhancing Family Caregiver Education in Morocco's Cancer Care.

During my thesis, I had the opportunity to work closely with family caregivers of cancer patients. This allowed me to meet these individuals and hear their stories filled with suffering. A large part of their complaints centered on the lack of information and training necessary to properly care for their ill relatives. Often, they find themselves responsible for a patient at home without possessing the required skills, sometimes knowing only the dosage of treatments to administer. This lack of training can lead to serious complications, such as bedsores in immobile patients or urinary infections. This experience underscores the critical need for comprehensive caregiver education in Morocco, a country where family caregivers play a crucial role in oncology care, especially in home-based support. To achieve this, the government, health care professionals, and NGOs must collaborate to develop accessible educational programs that equip caregivers with the necessary skills and knowledge.

Caring for an Individual with Chronic Lymphocytic Leukemia (CLL): Understanding Family Caregivers' Perceptions of Social Support, Caregiver Burden, and Unmet Support Needs.

Family caregivers (FCs) of a patient with chronic lymphocytic leukemia (CLL) can encounter unpredictable challenges and care demands. They can experience high levels of burden, a loss of self-care, and poor quality of life. Their receipt of social support and ability to communicate with clinicians may impact their burden. FCs would benefit from educational resources that teach them communication skills central to their ability to obtain the support they need-support that is imperative to reducing burden. To better target psychosocial educational interventions focused on social support and communication skills, we aimed to explore the relationship between social support, sources of support, and burden; the relationship between FCs' clinical communication and their perceptions of support and burden; and any unmet support needs. A total of 575 CLL FCs completed an online survey of validated scales about social support, burden, and clinical communication, as well as an open-ended item in which they reported any unmet support needs. Statistical analyses showed that FCs who perceived they were more supported reported less burden, and female FCs reported more burden than males. Support from family, friends, and professionals collectively contributed to FCs' support. FCs who perceived they had stronger communication skills with their loved one's clinicians reported more social support. FCs identified six areas of unmet support needs: financial, emotional, informational, instrumental, peer, and communication support. Collectively, findings show that increased social support can reduce FCs' burden and qualitative findings provide a roadmap of social support domains to target that could potentially improve the caregiving experience.

Improving the self-efficacy of caregivers of children with seizures using evidence-based practice.

BACKGROUND: Epilepsy is considered a widespread chronic illness; it is estimated that approximately 1% of all children have the condition. Parents and caregivers of children with seizures experience fear and anxiety relative to their perceived confidence to manage their child's seizures after leaving the hospital. Evidence supports the use of simulation to educate caregivers to improve their perceived level of self-efficacy. METHODS: The evidence-based practice project examined the impact of utilizing a simulation training session on the self-efficacy of caregivers of children with seizures at a large pediatric medical center in the southern United States. Caregivers of children with newly diagnosed seizures or with a recent change to their seizure treatment plan attended a simulation training session individualized to their discharge instructions. Demographic data, pre- and post-training self-efficacy measurements, and program satisfaction data were collected. FINDINGS: The 31 caregivers who participated during the 3-month implementation period experienced a statistically significant increase in self-efficacy (p < .0001 to 0.002) and reported being satisfied with the simulation education training. DISCUSSION: The project outcomes suggested simulation training was an effective method for improving the self-efficacy of caregivers of children with seizures and could be a feasible practice change at organizations with access to simulation technology. APPLICATION TO PRACTICE: The outcomes of the project aligned with the evidence available in the literature. The results reinforced that education that includes simulated learning opportunities was generally well-received by caregivers and may improve their confidence to care for their child after discharge.

A home visit program for low-income African American children with asthma: Caregivers' perception of asthma triggers and a gap in action.

PURPOSE: The goals are to gauge caregivers' knowledge of at-home asthma triggers and identify the areas on which educational campaigns can focus to alleviate a child's asthma symptoms. DESIGN AND METHODS: Families with children with moderate to severe asthmatic symptoms who had been recently hospitalized or in the emergency room were invited to participate in a home visit program. As part of the home visit, caregivers of the asthmatic children were asked a series of questions on asthma triggers and the measures for eliminating the triggers (N = 218). RESULTS: Findings show a gap between caregivers' perception of asthma triggers and the actions to mitigate or avoid such triggers. CONCLUSIONS: Overall findings show that home environments were suboptimal for the management and control of child asthma conditions. Knowledge about home triggers as well as the actions and efforts by caregivers and landlords to mitigate these was found to be inadequate. Even when caregivers are aware of the presence of at-home triggers, actions to minimize exposure to the trigger do not always follow due to a lack of power, resource, and knowledge. PRACTICE IMPLICATIONS: The findings raise the need for additional research to investigate the reasons for the lack of actions, advocacy for low-income families to live in a healthy environment, continued education and empowerment, and patient/caregiver-doctor partnership. Additionally, the provision of community support through community advocacy and training of culturally competent healthcare providers are needed for the successful management of pediatric asthma among African American children.

Educating caregivers of persons with cerebral palsy in night-time postural care: A randomized trial comparing two online training programs.

OBJECTIVE: Compare effectiveness of two differently formatted training programs in educating night-time postural care implementers. DESIGN: Mixed-methods parallel-group double-blind design with random assignment. SETTING: United States academic institution. PARTICIPANTS: Thirty-eight adult caregivers/providers of children with cerebral palsy. INTERVENTIONS: Both 2-hour online programs included content on night-time postural care evidence, risk-factor monitoring, sleep-system types, positioning methods, and assessments. Group A used interactive videos, Group B summary information with web-links. MAIN MEASURES: We measured self-perceived competence via questionnaires (baseline, post-training, post-simulation) containing 4-point rating-scales of knowledge, ability, and confidence and measured positioning ability via a simulation observation instrument comprising 16 positioning-task ratings with space for describing performance. We recorded participant actions/statements using fieldnotes. RESULTS: Thirty-eight completed training (19 per group). Group A (vs B) showed significantly greater self-perceived competence changes post-training (0.46 points (SE 0.17), P = 0.008). Thirty-seven positioned a standardized "client," with groups not differing significantly on total tasks completed correctly (F(1, 92.32) = 1.91, P = 0.17) averaging 11.85 (SE 0.83) and 12.60 (SE 0.84) of 16 tasks correct. Group A's post-positioning/simulation self-ratings were significantly associated with actual ability (r = 0.53, P = 0.019). In both groups ⩾47% of caregivers incorrectly completed the tasks of placing head and neck in neutral and snugging up all [positioning] parts. CONCLUSION: The sleep care positioning training program (interactive video-based format) is effective in building caregivers' self-perceived competence for night-time postural care. While the lesson was well-received by caregivers and considered a "match [to their] learning style," the lesson did not lead to greater improvement in actual ability to position the "client" compared to control training.

Telemedicine-assisted care of an older patient with COVID-19 and dementia: bridging the gap between hospital and home.

Hospital at Home (HaH) has been proposed as a solution to relieve pressure on hospital beds during the COVID-19 pandemic; however, caregivers' feelings of inadequacy and concerns on the need for tighter clinical monitoring might lead to unnecessary and potentially harmful hospital admissions in frail older patients with mild or atypical COVID-19. Here we report the case of a 91-year old woman with severe dementia and atypical COVID-19 that could be successfully managed by our HaH thanks to her highly motivated caregivers and the support of a telemedicine solution (TMS) to provide caregiver training and support as well as supplementary telemonitoring. Despite some well-known issues on TMS use, the hybrid in-person and tele-visit approach of TMS-assisted HaH could help to create a "secure" environment, empowering caregivers to manage frail older adults with COVID-19 at home, avoiding unnecessary admissions to closed wards and their negative physical, functional and psychological outcomes.

Nurse and Provider Pain Management Education Priorities and Barriers.

BACKGROUND: The purpose of this research was to describe health care nurse and providers' pain management education priorities and barriers for pediatric cardio-thoracic surgical (CTS) patients and their caregivers. DESIGN: This was a qualitative-descriptive study design using survey methodology. METHODS: A convenience sample of 206 (CTS) health care professionals including 172 nurses, 11 advanced practice providers, and 23 physicians were invited to participate in this study. The survey was distributed through a work e-mail within a 145-bed tertiary pediatric hospital and focused on collaborative pain management educational priorities and barriers. RESULTS: Of the 206 cardio-thoracic service health care nurses/providers surveyed, 45.6 % (N = 94) responded to the survey. The top pain management education priority for these nurses/providers included immediate postoperative pain management knowledge for the caregiver and pediatric CTS patient. The lowest priority 13.8% (N = 13) included education related to pain management needs after discharge. Of the 94 nurses/providers who responded, 31.9% (n = 30) identified the presence of timing and communication barriers in providing pain management education with caregivers and pediatric CTS patients. AIMS: The aim of this research was to describe health care providers pain management education priorities and barriers for cardio-thoracic surgical (CTS) pediatric patients and their caregivers. SETTING: 145-bed tertiary pediatric hospital. PARTICIPANTS/SUBJECTS: Nurses, advanced practice providers [APP's], and physicians. CONCLUSIONS: Nurses and providers prioritize immediate postoperative pain management education; however, there remains a need to focus more on the outcomes of pain management education for caregivers and pediatric CTS patients after discharge.

Improving parenting knowledge through caregiver education in China.

BACKGROUND: Caregivers' parenting knowledge is of importance to child development and to achieve positive child outcomes. Even though some caregiver education programs have demonstrated positive effects, most of them are carried out in developed countries and among western samples. As a developing country with the second-largest child population worldwide, China has initiated caregiver education programs to promote parenting knowledge among caregivers since 2016. This study examines the effect of an innovative caregiver education program on caregivers' perceived increase of parenting knowledge. METHODS: A total of 310 caregivers with a child aged between 0 and 3 from Z city, China, were randomly selected to complete a survey. Caregivers' perceived increase of parenting knowledge was assessed by five specified knowledge dimensions, namely, child growth, feeding behaviours, daily care, disease prevention and safety. The independent variable was program participation, measured by respondents' use of program services. OLS regression was employed to assess the association between caregivers' program participation and their perceived increase of knowledge, controlling basic demographic and socio-economic factors. RESULTS: In general, program participation had statistically significant associations with caregivers' perceived increase of parenting knowledge. The associations varied by service type. Particularly, online development evaluations and in-home sessions showed relatively consistent and positive effects on caregivers' perceived increase of parenting knowledge. CONCLUSIONS: This caregiver education program had a positive effect on caregivers' perceived increase of parenting knowledge, particularly through the use of the online development evaluations and in-home sessions. As one of the earliest initiatives of this kind in China, the findings reveal the promise of an innovative program to advance caregivers and children.

Pediatric and Neonatal Tracheostomy Caregiver Education with Phased Simulation to Increase Competency and Enhance Coping.

PURPOSE: Infants and children with medically complex needs depend on their caregivers for activities of daily life and specialized care of various devices they need to survive. Caregiver education is a primary goal in discharge planning to ensure safe, competent home care for these medically fragile children. Standard of care is bedside teaching. The Family Tracheostomy Program complements traditional training with a phased process of simulation. The purpose of this QA/QI project was to increase caregiver competency and decrease anxiety level for pediatric tracheostomy care through simulation training. METHOD: For two years, the pediatric and neonatal intensive care units trained twenty caregivers of new tracheostomy patients with the supplementation of simulation to standard bedside training. Using a five-point rating scale, caregivers completed pre- and post- tests for separate skills and scenario training sessions. RESULTS: Skills scores were hypothesized to increase after simulation training. In a small sample (n = 20), scores increased from pre-test (µ = 11.45, SD = 4.88) to post-test (µ = 22.6, SD = 2.01). This change was significant (t(19) = 10.78, p < 0.001). Scenario scores were hypothesized to increase after simulation training. In another small sample (n = 15), scores increased from pre-test (µ = 23.40, SD = 7.11) to post-test (µ = 28.73, SD = 2.31). This change was significant (t(14) = 3.78, p < 0.001). CONCLUSION: Simulation as a complement to bedside caregiver education increased caregiver competency and decreased anxiety levels for these samples. PRACTICE IMPLICATIONS: Organizations caring for neonatal and pediatric tracheostomy patients might consider providing additional support with a phased method of simulation as part of caregiver education.

Moving towards Therapists Becoming Better Educators: A Commentary on Changes in the Content of Pediatric Physical Therapy for Infants: A Quantitative, Observational Study.

Patients and their families have expressed that they want information (Hendricks, 2000) and as a result often turn to Google for health and medical information. Society as a whole is more informed than ever and no longer rely only on medical practitioners as in previous generations. Instead, and rightly so, they question medical experts and want to know the reasoning and rationale behind everything they experience. This combined with the shift towards family-centred principles over the last 20 years underscores the need to provide comprehensive and effective education to families. But what should that look like? Improving parental competence through education promotes their beliefs that they can be positive agents of change in their child's life (Guimond et al., 2008 ). Similarly, therapists are slowly starting to concede that parents have the greatest amount of time and influence over their children's development (Mahoney and Perales, 2006 ), and as a result, are the primary agents of change.

In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences.

BACKGROUND: Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. METHODS: We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes. RESULTS: We interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources. CONCLUSIONS: These findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and describe diverse cognitive, functional and behavioral symptoms that lead to dementia, and recognize the benefits of early detection in accessing information regarding multi-modality management and care; 2.) Improved methods are needed for PCPs to detect and manage cognitive and behavioral changes, as well as mechanisms that facilitate the busy PCP, either directly or via referral, to provide caregiver information, education, support, and services. The critical relationship between caregivers and PCPs should not be circumvented but should be facilitated to provide more effective guidance regarding dementia caregiver needs.

Effectiveness of educational interventions for informal caregivers of individuals with dementia residing in the community: systematic review and meta-analysis of randomised controlled trials.

OBJECTIVE: This study aims to assess whether educational programmes for caregivers of individuals with dementia living in the community are effective on caregiver burden, quality of life (QoL), depression and transitions to long stay care compared with usual care. METHOD: MEDLINE, EMBASE, PsycINFO, CINAHL, AgeLine, CENTRAL and ERIC were searched with no restrictions on language or publication status in February 2013. Randomised controlled trials (RCTs) were eligible. Participants were informal caregivers undertaking day to day care of an individual with dementia living in the community. Interventions were educational programmes aimed at teaching skills relevant to dementia caring. Two authors independently assessed studies for eligibility, assessed risk of bias and extracted data. RESULTS: We screened 1390 citations and included seven RCTs with 764 participants. Meta-analysis of five trials showed a moderate effect on carer burden (Standardised Mean Difference (SMD) = -0.52; 95% confidence interval (CI) -0.79 to -0.26; I(2) = 40%). Meta-analysis of two trials showed a small effect on depression (SMD = -0.37; 95% CI -0.65 to -0.09; I(2) = 0%). There was no effect on number of transitions to long stay care (relative risk 1.29; 95% CI 0.80 to 2.08). Effect on QoL was not estimable as studies varied in reporting of sub-domains and constructs within scales. CONCLUSION: Educational programmes have a moderate effect on caregiver burden and a small effect on depression. Evidence of an effect on QoL and transitions to long stay care remains unclear.

A Scoping Review of Dementia Interventions in Home-Based Primary Care.

OBJECTIVES: Home-based primary care (HBPC) provides interdisciplinary, longitudinal, comprehensive care at home to homebound older adults. The prevalence of dementia among HBPC recipients is approximately 50%. To date, little research has been performed to determine whether dementia-specific interventions have been conducted in HBPC or their efficacy. We performed a scoping review to assess the landscape of dementia interventions in HBPC. DESIGN: Systematic scoping review. SETTING AND PARTICIPANTS: Care delivery programs for patients or caregivers of patients with dementia for the purpose of improving the management of dementia in the setting of HBPC. METHODS: The PRISMA-ScR protocol was followed. Literature searches were performed using PubMed, Embase, and Scopus for articles on dementia-focused interventions implemented in HBPC. Articles were excluded if they consisted of abstracts only, were not in English, or were not dementia interventions in HBPC. RESULTS: A total of 1657 unique titles and abstracts were screened. Overall, 1584 titles and abstracts were excluded, resulting in 73 full-text studies to assess for eligibility. Of these 73 full-text studies, 1 study met criteria for inclusion, an observational study assessing the implementation of the Resources for Enhancing Alzheimer's Caregiver Health (REACH) intervention in Veterans Affairs HBPC. That study found the intervention to be effective in reducing caregiver burden, with a decrease of 2 hours on duty per day, trending toward significance. Among the excluded 72 full-text studies, some studies included potentially relevant interventions that could be translated into HBPC care, including dementia interventions that targeted long-term services and supports, office-based primary care and other nonhome settings such as nursing homes, and home-based palliative care. CONCLUSIONS AND IMPLICATIONS: Despite high prevalence of dementia among homebound older adults receiving HBPC, there are a dearth of studies on HBPC-specific dementia interventions. Future studies should consider adapting and testing interventions found to be effective in other settings to HBPC.

The non-clinical burden of febrile seizures: a systematic review.

Febrile seizures (FS) can be frightening for parents, even though they are usually harmless. Various questionnaires have been used to assess parental reactions and awareness about FS, revealing insufficient knowledge. Studies have shown that educational interventions significantly reduce parental concerns, improve knowledge, and promote better first-aid measures. Providing clear information and emotional support to parents is important to reduce their concerns and improve FS management. Healthcare providers should give comprehensive information about FS, including the risk of recurrence, and provide clear instructions on their management. The economic impact of FS includes direct and indirect costs. Studies have shown a decrease of hospitalizations and associated costs due to improved clinical adherence to guidelines, which also reduces the inappropriate use of healthcare resources. This systematic review provides a comprehensive overview of the existing literature on parental anxiety and education about FS, as well as their economic impact, aiming at identifying areas for improvement in the management of FS and providing valuable insights for healthcare providers and policymakers to better address the non-clinical burden of this condition.

The positioning information that should be provided to caregivers of adults with a physical disability on supply of custom-contoured seating, a Delphi study.

PURPOSE: This research aims to identify information that is important to provide on supply of custom-contoured seating. The way this information would be best communicated is also of interest. A two-round e-Delphi study was utilised to explore consensus. A panel of stakeholders from Ireland including experts in positioning clients in custom-contoured seating and caregivers were recruited. The first round consisted of open-ended questions and was analysed using thematic analysis. The second round employed a rating technique and 7-point Likert scale. Consensus was set a priori at 70% agreement. The way information should be communicated and by whom was rated in order of preference. MATERIALS AND METHODS: Fifteen participants were recruited, nine clinicians and four caregivers. Fifty-two statements under six themes (transfers = 10, positioning = 22, pressure care = 4, general use = 4, post-supply follow-up = 8, functional activity = 4) were generated in round 1 by 13/15 participants. Round 2 was completed by 10/15. 49/52 statements reached consensus and were deemed important. The ways information should be communicated and by whom was identified. Caregivers want individualised information whereas clinicians preferred a more generic approach. RESULTS AND CONCLUSIONS: There was a high degree of consensus on what information is required to support caregivers. The topics demonstrate the extensive information that should be provided. The preferred delivery method for primary caregivers was hands-on training with the opportunity to practice and take videos. Stakeholders differed in how they would prefer information delivered. Further research should evaluate the method of delivering training and its effectiveness.

Caregivers report a lack of guidance on postural management, which exacerbates their own health problems and results in underutilization of positioning equipment.Caregivers should be provided with information on transfers, positioning, pressure care, general chair use, post-supply follow-up, and the impact on functional activities when a new custom contoured seat is supplied.The preferred method of providing information to primary caregivers is to use hands-on training with the opportunity to practice and take videos during the supply appointment. Personalised information booklets or group training sessions may be most appropriate for additional caregivers.

Development and Evaluation of a Clinician-Vetted Dementia Caregiver Resources Website: Mixed Methods Approach.

BACKGROUND: About 11 million Americans are caregivers for the 6.7 million Americans currently living with dementia. They provide over 18 billion hours of unpaid care per year, yet most have no formal dementia education or support. It is extremely difficult for clinicians to keep up with the demand for caregiver education, especially as dementia is neurodegenerative in nature, requiring different information at different stages of the disease process. In this digital age, caregivers often seek dementia information on the internet, but clinicians lack a single, reliable compendium of expert-approved digital resources to provide to dementia caregivers. OBJECTIVE: Our aim was to create a dementia caregiver resources website to serve as a hub for user-friendly, high-quality, and expert-reviewed dementia educational resources that clinicians can easily supply to family caregivers of people with dementia. METHODS: An interdisciplinary website development team (representing dementia experts from occupational therapy, nursing, social work, geriatrics, and neurology) went through 6 iterative steps of website development to ensure resource selection quality and eligibility rigor. Steps included (1) resource collection, (2) creation of eligibility criteria, (3) resource organization by topic, (4) additional content identification, (5) finalize resource selection, and (6) website testing and launch. Website visits were tracked, and a 20-item survey about website usability and utility was sent to Veterans Affairs tele-geriatrics interdisciplinary specialty care groups. RESULTS: Following website development, the dementia caregiver resource website was launched in February 2022. Over the first 9 months, the site averaged 1100 visits per month. The 3 subcategories with the highest number of visits were "general dementia information," "activities of daily living," and "self-care and support." Most (44/45, 98%) respondents agreed or strongly agreed that the website was easy to navigate, and all respondents agreed or strongly agreed that the resources were useful. CONCLUSIONS: The iterative process of creating the dementia caregiver resources website included continuous identification, categorization, and prioritization of resources, followed by clinician feedback on website usability, accessibility, and suggestions for improvement. The website received thousands of visits and positive clinician reviews in its first 9 months. Results demonstrate that an expert-vetted, nationally, and remotely available resource website allows for easy access to dementia education for clinicians to provide for their patients and caregivers. This process of website development can serve as a model for other clinical subspecialty groups seeking to create a comprehensive educational resource for populations who lack easy access to specialty care.

Pediatric Tracheostomy Year in Review.

Tracheostomized children have higher mortality compared to adults due to smaller airway anatomy and greater medical complexity and are at high risk for life-threatening complications. Following new tracheostomy placement, caregivers are required to successfully complete extensive training before discharge home. Training for tracheostomy emergencies such as tube obstruction and accidental decannulation is challenging without real-life, hands-on experience, but simulation training has shown promising effects on improving caregiver knowledge and comfort in preparing for emergency situations. Readmissions and emergency department visits are common following discharge, with many due to respiratory illness. Inhaled antibiotics are frequently prescribed to treat bacterial respiratory infection. However, guidelines for standardized management of tracheostomy-related respiratory illness are not available. Although standardized decannulation protocols are utilized, evidence-based guidelines are lacking, and the role of routine polysomnogram prior to decannulation is unresolved. Several knowledge gaps in management of pediatric tracheostomy present the opportunity for future research to improve patient outcomes.