'Tausi Feagaiga: A Project to Train Caregivers and Empower the American Samoan Community.

The 'Tausi Feagaiga (Covenant Keeper) project was a partnership to support the traditional values of tausi matua (caring for one's elders). The partners included a non-governmental organization (Pacific Youth and Community Development), a faith-based organization (Roman Catholic Diocese of Samoa-Pago Pago), and an institute of higher education (University of Hawai'i John A. Burns School of Medicine). The project was created to address the lack of community-based health care such as home health or hospice, and families needing to work outside the home. A culturally based caregiving curriculum was developed to educate caregivers and improve their knowledge and skills. Using a train-the-trainer model, 125 caregivers were trained in family caregiving from 2016-2020. Training was conducted through an intensive workshop followed by practicum at Hope House, the Catholic Diocese home for the aged. Participants who expressed a willingness and competency were mentored to be trainers to continue the 'Tausi Feagaiga project. The mean self-rated confidence in caregiving improved significantly from 3.17 ± 1.02 (mean SD) pre workshop to 3.53 ± 0.71 post workshop (P = .001). Competence in geriatric syndromes was improved from 18.04 ± 4.27 to 21.31 ± 4.30 after attending the workshop (P < .001) and the feedback was extremely positive. Technical assistance was provided to obtain funding through American Samoa Medicaid State Agency to improve the existing infrastructure of Hope House, obtain much needed supplies, and increase ability to hire the participants. 'Tausi Feagaiga positively impacted the lives of the residents of Hope House, the course participants, the elders in the community, and those who care for them.

A Randomized Controlled Trial Comparing the Effect of Tracheostomy Training using Mannequin-Based Simulation and Smartphone Application on Self-Efficacy and Anxiety of Caregivers.

Inefficient education is a cause of anxiety and low self-efficacy among caregivers, especially for those caring for patients with tracheostomy. This randomized controlled trial aimed to compare the outcomes of tracheostomy care education by mannequin-based simulation and smartphone application. The participants were 126 primary caregivers of tracheostomy patients being discharged home from hospitals affiliated with Tehran University of Medical Sciences. The control group received routine care. Caregiver self-efficacy was assessed using the Caregiver Inventory and the Hamilton Anxiety Rating Scale prior to the education and 1 month after. There were significant differences among the three groups regarding the mean scores of self-efficacy and anxiety. There was a significant increase in self-efficacy (P ≤ .0001) and a significant decrease in anxiety (P ≤ .0001) scores after the intervention. The intergroup comparison showed a significant difference between the intervention groups and the control group in terms of changes in the anxiety and self-efficacy scores of caregivers (P < .001).

Randomized Controlled Trial of Telementoring During Resource-Limited Patient Care Simulation Improves Caregiver Performance and Patient Survival.

OBJECTIVES: To determine the impact of telementoring on caregiver performance during a high-fidelity medical simulation model (HFMSM) of a critically ill patient in a resource-limited setting. DESIGN: A two-center, randomized, controlled study using a HFMSM of a patient with community-acquired pneumonia complicated by acute respiratory distress syndrome. SETTING: A notional clinic in a remote location staffed by a single clinician and nonmedical assistant. PARTICIPANTS: Clinicians with limited experience managing critically ill patients. INTERVENTIONS: Telemedicine (TM) support. MEASUREMENTS: The primary outcome was clinical performance as measured by accuracy, reliability, and efficiency of care. Secondary outcomes were patient survival, procedural quality, subjective assessment of the HFMSM, and perceived workload. MAIN RESULTS: TM participants (N = 11) performed better than non-TM (NTM, N = 12) in providing expected care (accuracy), delivering care more consistently (reliability), and without consistent differences in efficiency (timeliness of care). Accuracy: TM completed 91% and NTM 42% of expected tasks and procedures. Efficiency: groups did not differ in the mean (± sd) minutes it took to obtain an advanced airway successfully (TM 15.2 ± 10.5 vs. NTM 22.8 ± 8.4, p = 0.10) or decompress a tension pneumothorax with a needle (TM 0.7 ± 0.5 vs. NTM 0.6 ± 0.9, p = 0.65). TM was slower than NTM in completing thoracostomy (22.3 ± 10.2 vs. 12.3 ± 4.8, p = 0.03). Reliability: TM performed 13 of 17 (76%) tasks with more consistent timing than NTM. TM completed 68% and NTM 29% of procedural quality metrics. Eighty-two percent of the TM participants versus 17% of the NTM participants simulated patients survived (p = 0.003). The groups similarly perceived the HFMSM as realistic, managed their patients with personal ownership, and experienced comparable workload and stress. CONCLUSIONS: Remote expertise provided with TM to caregivers in resource-limited settings improves caregiver performance, quality of care, and potentially real patient survival. HFMSM can be used to study interventions in ways not possible with real patients.

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

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

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

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

Home symptom management training programme: carer evaluation.

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

ROUTE-T1D: A behavioral intervention to promote optimal continuous glucose monitor use among racially minoritized youth with type 1 diabetes: Design and development.

BACKGROUND: Type 1 diabetes management is often challenging during adolescence, and many youth with type 1 diabetes struggle with sustained and optimal continuous glucose monitor (CGM) use. Due to racial oppression and racially discriminatory policies leading to inequitable access to quality healthcare and life necessities, racially minoritized youth are significantly less likely to use CGM. METHODS: ROUTE-T1D: Research on Optimizing the Use of Technology with Education is a pilot behavioral intervention designed to promote optimal CGM use among racially minoritized youth with type 1 diabetes. Intervention strategies include problem solving CGM challenges and promoting positive caregiver-youth communication related to CGM data. RESULTS: This randomized waitlist intervention provides participants with access to three telemedicine sessions with a Certified Diabetes Care and Education Specialist. Caregiver participants are also connected with a peer-parent coach. CONCLUSION: Hypothesized findings and anticipated challenges are discussed. Future directions regarding sustaining and optimizing the use of diabetes technology among racially minoritized pediatric populations are reviewed.

Asthma Academy for Family Caregivers: A Quality Improvement Project.

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

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.

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

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

A digital Acceptance and Commitment Therapy and education intervention targeting stress of parents and caregivers with preterm babies in the neonatal intensive care unit: A randomised controlled cluster trial protocol.

BACKGROUND: Parents with babies in the neonatal intensive care unit (NICU) experience high levels of stress, anxiety, and depression. The NICU experience may also lead to impaired parenting and early childhood socio-emotional problems. Psychosocial interventions can reduce NICU parent distress. Yet many are time-intensive and costly to deliver. Acceptance and Commitment Therapy (ACT), an evidence-based psychological therapy, may address these needs. ACT has been shown to be effective in reducing distress of parents of children with chronic illnesses, particularly when combined with parent education. Therefore, the primary aim of this study is to determine if a digital intervention that uses a brief form of ACT plus parent education will reduce the stress of primary caregivers with preterm babies in the NICU more than a digital education-only intervention or standard care control group. METHODS: In a randomised controlled cluster trial design, participants will be randomly assigned to one of three groups: ACT plus education; education-only; or standard care control. The primary outcome will be parental/caregiver stress levels, measured on the Parental Stress Scale: Neonatal Intensive Care Unit. Secondary outcomes include overall stress, anxiety, and depression. Outcome measures will be evaluated at baseline, two weeks after enrolment, discharge to home, and 3-months post-discharge. CONCLUSION: This study will explore the efficacy of a digital ACT plus education intervention on parental stress levels. While position papers have advocated for the use of ACT with NICU parents, this study will be the first to test ACT as a stand-alone intervention with this population. TRIAL REGISTRATION: This trial was prospectively registered with the Australian New Zealand Clinical Trials Registry on 14 June 2023 (ACTRN12623000641695p).

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.

High Intensity Functional Training for People with Parkinson's & Their Care Partners: A Feasibility Study.

PURPOSE: Various forms of exercise have proven health benefits for people with Parkinson's (pwPD) yet high intensity functional training (HIFT) has yet to be studied. The purpose of this study was to examine the feasibility, physical and psychosocial impacts of a HIFT program for pwPD and their care partners (CPs). DESIGN: A single group, pre-post design with assessments before, in the middle (13 weeks), and after the 25-week intervention. SETTING: Community fitness facility. PARTICIPANTS: Fourteen pwPD (10 at Hoehn Yahr Stage ≤2, 4 females) and 10 CPs (5 females) were included (mean age = 71.5 (6.1)). INTERVENTION: A 25-week HIFT program (≤49 exercise sessions, ≤75 min long). MEASURES: Recruitment, retention, attendance, safety and exercise intensity (measured via session-Rating of Perceived Exertion (RPE)) was assessed in addition to cardiovascular endurance, lower extremity strength, walking speed, balance, exercise self-efficacy, balance confidence, social support for exercise and health-related quality of life. ANALYSIS: Descriptive data was used to describe feasibility measures. Wilcoxon signed-rank test was used to compare pre- and post-program data. Effect size, r, was calculated. RESULTS: Recruitment rates were ≥40% for pwPD and CPs and retention rates were 80% for pwPD and 62.5% for CPs. Average session attendance was 71.2% with 15 adverse events reported, including 7 non-injurious falls. Median session-RPE was 5 (IQR = 1) out of 10. PwPD demonstrated significant improvements in cardiovascular endurance, self-selected and fast walking speeds, balance and social support for exercise. CPs demonstrated significant improvements in cardiovascular endurance and lower extremity strength. Exercise self-efficacy, balance confidence and health-related quality of life did not significantly change for pwPD or CPs. CONCLUSION: High intensity functional training appears feasible for pwPD and their CPs and may lead to health benefits. Healthcare providers should consider HIFT as another option to engage pwPD in community-based exercise.

Just-in-Time: A Caregiver-Mediated Intervention for Toddlers With Autism.

PURPOSE: We investigated effects of an adaptive telehealth coaching model on caregiver implementation of enhanced milieu teaching (EMT) with newly diagnosed toddlers with autism. METHOD: Three caregiver-child dyads participated in a multiple-baseline-across-behaviors, single-case design. Caregivers were taught EMT via telehealth using the teach-model-coach-review approach. EMT strategies were taught sequentially in four components corresponding to design tiers. Caregivers reported their needs for support and adaptation via weekly surveys. Primary outcomes were measures of caregiver's implementation, including (a) a fidelity checklist for wholistic use of EMT and (b) a percentage of correct use of a subset of key EMT strategies (e.g., matched turns, target talk, expansions, play actions, milieu episodes). Generalization and maintenance of caregiver strategy use in uncoached home activities were measured. The number of different words used by children was measured as a secondary, descriptive outcome. Social validity data were collected through ratings and interviews at the end of the study. RESULTS: There was a functional relation between the intervention and caregiver's implementation of EMT for all dyads. Caregiver's use of EMT strategies often generalized and maintained post-intervention. Child response to intervention was variable. Social validity data indicated that the model was beneficial to caregivers and children. CONCLUSIONS: An adaptive telehealth coaching model is effective for teaching caregivers of toddlers with autism to implement EMT and potentially helps to bridge the gap between diagnosis and comprehensive intervention. Further exploration of the relation between caregiver fidelity and dosage of active ingredients and child spoken language outcomes is needed. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.25156223.

Giving voice to the voiceless: Understanding the perceived needs of dementia family carers in Soweto, a South African township.

This qualitative study aimed to provide family caregivers with an independent platform to reflect on and identify their needs in the role of dementia caregiver. Thirty caregivers were interviewed using a semi-structured approach, and data analysis followed a reflective thematic analysis method. The study revealed that Black African caregivers in townships require sufficient information and orientation to dementia-specific services, psychoeducation on dementia as a disease and its behavioural manifestations, as well as practical skills to manage the disease process. Caregivers expressed the need for in-depth, accessible education to boost their confidence and resilience in handling the challenges of dementia caregiving. They also proposed community initiatives to raise awareness, promote knowledge, and facilitate early detection and diagnosis of dementia. Additional needs included informational and educational workshops, resources like transportation services and helplines, day care facilities, media campaigns, and collaboration with the government for funding and policy change. New caregivers were advised to seek comprehensive education, support, and services while preserving the dignity of their family members with dementia. Remarkably, the identified needs and community initiatives aligned with the priority areas outlined by ADI for a National Dementia Plan, which South Africa currently lacks. The study highlights the importance of developing a National Dementia Plan in South Africa through collaboration among stakeholders, including communities, policy-makers, and multidisciplinary healthcare teams, while ensuring that individuals and families affected by dementia have a voice.

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.

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

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

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

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