Caregivers Of Children Research Articles

Codesign and evaluation of advanced therapeutic information resources for and with families of children with neurological conditions: a mixed methods cross-sectional study

ObjectiveParents and caregivers of children with neurological conditions express interest in new and developing treatments and trials; however, they have limited knowledge of, and access to, reliable information. This study...

Caregiver burden, perceived stress, and social support among parents of chronically Ill children in Saudi Arabia

BackgroundChildren with chronic illnesses pose a significant burden on parents who are directly involved in caregiving. Despite the high prevalence of chronic illnesses among children in Saudi Arabia, no study has examined caregiver burden and other related factors in the Saudi Population. Thus, this study determined the levels of caregiver burden, perceived social support, and perceived stress and their association among parents who provide care to their child with a chronic illness.MethodsA cross-sectional design was used for this study. Data were collected through an online survey using standardized scales from parents who had at least one child suffering from a chronic illness or disability for more than 12 months and requiring continuous medical treatment.ResultsA total of 206 parents reported mild-to-moderate levels of caregiver burden, moderate levels of perceived stress, and high levels of perceived social support. Furthermore, perceived social support was significantly correlated with caregiver burden (rho = − 0.36, p < 0.01) and perceived stress (rho = − 0.45, p < 0.01), and caregiver burden was significantly associated with perceived stress (rho = 0.65, p < 0.01).ConclusionsStudy findings suggest that social support could play a pivotal role in designing intervention programs to mitigate the stress caused by the caregiver burden. This insight underscores the urgent need for policymakers to develop psychosocial interventions and targeted programs for caregivers of children with chronic illnesses.

Study protocol for a multicenter randomized controlled trial on simulation-based communication training for pediatric cardiology trainees (SIMUL-CHD)

BackgroundEffective physician-patient communication is crucial to compassionate healthcare, particularly when conveying life-altering diagnoses such as those associated with congenital heart diseases. Despite its importance, medical practitioners often face challenges in communicating effectively. Because of these gaps, we aim to introduce a simulation-based training protocol to improve pediatric cardiology trainee’s communication skills. This study will be conducted in collaboration with associations supporting caregivers of children with congenital heart disease. It strives to demonstrate how specific training programs can efficiently foster humanistic, patient-centered care in standard medical practice.MethodsThis multicenter, open-label randomized controlled trial will be conducted in pediatric cardiac units and simulation centers of across 10 universities in France. The study population comprises pediatric cardiologists in training (including pediatric cardiac fellows or specialist assistants). The SIMUL-CHD intervention will consist of simulation-based training with standardized patients, focusing on improving communication skills for pediatric cardiology trainees during diagnostic counselling. Patients and caregivers have been recruited from a National Patient Association named “Petit Cœur de Beurre”. The primary outcome is the quality of physicians’ communication skills. The evaluation committee, which will review video recordings of the sessions, will be blinded to which participants received simulation-based training (group of interest) and which received theory-based training (control group). Secondary outcomes are the effect of SIMUL-CHD on empathy and anxiety levels in young pediatric cardiologists. Baseline scores pre and post-intervention will be compared, and skill improvement resulting from the intervention measured.DiscussionSimulation-based training has proven efficacy in teaching technical skills in various scenarios however its application to communication skills in pediatric cardiology remains unexplored. The involvement of experienced parents provides a unique perspective, incorporating their profound understanding of the emotional challenges and specific hurdles faced by families dealing with congenital heart disease.Trial registrationThis trial is registered with the OSF registry (registered https://osf.io/ed78q).

The use of Language ENvironment Analysis in autism research: A systematic review.

In research, language ability has historically been measured using structured tasks in laboratory settings. In recent years, there has been a growing emphasis on the need to instead capture language ability in an individual's natural setting (i.e. through social interaction or in their home). Considering natural language may be particularly important for the autistic population, as an autistic child's language ability can be very different depending on the setting. One common tool for capturing natural language is the LENA recording system, which takes audio recordings over long periods of time and provides estimates of children's and caregivers' speech. The purpose of this systematic review is to summarize the use of LENA in autism research, to highlight the strengths and limitations of the system as identified by researchers, and to provide recommendations for future research and clinical use. We identified 42 autism studies that used LENA in a variety of ways and settings. Most studies used LENA within the guidelines put forth by its creators, and it was most commonly used to understand speech or speech development for autistic children. LENA is a useful tool for clinicians and caregivers to gain some insights into child speech, but those considering using it should be aware of concerns about its accuracy and limitations about the information it provides. In this review, we supplement the official LENA guidelines with specific suggestions for use with the autistic population.

Identifying behavior change techniques (BCTs) in responsive feeding interventions to prevent childhood obesity-A systematic review.

Complex interventions that include responsive infant feeding components can potentially prevent childhood obesity. To develop a replicable responsive feeding intervention, an understanding of the most effective behavior change techniques (BCTs) and theory is needed. To identify the BCTs and theories used in interventions with responsive feeding components for caregivers of children ≤2 years. PsycINFO, CINAHL, Cochrane Library, EMBASE, and MIDIRS were searched from inception to May 2023. Studies of obesity prevention interventions with a responsive feeding component were included. BCT Taxonomy Version 1 and Michie and Prestwich theory coding method were applied. Eighteen interventions were identified; the number of BCTs ranged from 3 to 11 (mean = 5.5). The most used BCTs were "Instruction on how to perform a behaviour" (17/18) and "Adding objects to the environment" (13/18), which were commonly used in the nine trials demonstrating higher responsive feeding behaviours and the four trials reporting reduced likelihood of overweight or obesity, or rapid weight gain. Fifteen trials reported use of theory. BCT use was low in interventions with responsive feeding components. BCTs are replicable; their use in interventions, alongside theory, will ensure that key determinants of responsive feeding behavior are included in future obesity prevention interventions.

Stress in Family Caregivers of Children with Chronic Health Conditions: A Case–Control Study

Objectives: This study analyzed the stress experienced by family caregivers of children with special healthcare needs and identified associated factors. Methods: A case–control study was conducted with the “cases” being caregivers of children with chronic conditions and the “controls” being caregivers of healthy children. Recruitment was carried out via social media and complemented by snowball sampling. A sociodemographic questionnaire and the Perceived Stress Scale were applied, with four saliva samples collected in one day (at 8:00 am, 30 min later, and 4 and 12 h later). The Area Under the Curve for total daily cortisol production was calculated using the log-trapezoidal method. The Wilcoxon test and repeated-measures ANOVA were used for statistical analysis. Results: In total, 100 caregivers participated, with 50 in the “case” group and 50 in the “control” group. Significant differences in stress scores and salivary cortisol levels were observed between the groups, with the other variables constant. In both groups, cortisol levels followed a typical circadian pattern. Family income was associated with perceived stress. Caregiver age significantly explained perceived stress (p = 0.0098) and total cortisol production. Caregiver occupation also influenced cortisol results. Conclusions: Caregivers of children with chronic conditions showed higher perceived stress and lower cortisol production compared to those of healthy children. Family income, occupation, and caregiver age were associated with stress.

Use of Child Restraint Systems in Thailand and Factors associated with it: A Cross-Sectional Study

Objective: To determine the use of child restraint systems among caregivers of children in Thailand and to identify factors associated with it. Materials and Methods: Caregivers of children under 12 years old who utilized medical services at Lampang Hospital between March 2023 and March 2024 were asked to participate in this cross-sectional study. Data on characteristics of child and caregiver, driving behavior, and knowledge about child restraint systems were collected via a questionnaire. Multivariable regression was applied to analyze associated factors. Results: Of the 322 eligible caregivers, 279 (86.6%) participated, of which 127(44.5%) used a child restraint system. A higher caregiver education level (odds ratio [OR] 2.28, 95% CI 1.18; 4.39), and driving 3–7 days per week (OR 3.92, 95% CI 1.82; 8.40) were associated with more frequent restraint use. A higher age of the child (OR 0.97, 95% CI 0.96; 0.98) was associated with less frequent restraint use. Conclusion: Fewer than half of the caregivers utilized child restraint systems. Higher caregiver education levels and more frequent driving were associated with more frequent use, while older child age was associated with less frequent use of child restraint systems. Targeted interventions are needed to improve the use of child restraint systems.

Breaking the cycle between caregiver mental health and child behavioral issues: Does food insecurity matter?

Food insecurity is a key determinant of not only caregiver’s mental health but also children’s emotional problems and hyperactivity symptoms. Although substantial studies have explored such a relationship, it is unclear to us whether this relation would vary when considering that caregiver’s mental health and aforementioned children’s behavioral issues can be the cause and effect of each other. Addressing this research gap is a key to advancing our understanding of how to promote a healthier family dynamic, especially for those facing material needs. This research applies the family stress model to explore how food insecurity affects caregiver psychological distress and child emotional problems and hyperactivity symptoms, while considering the reciprocal relationships between caregiver mental health and these child behavioral issues. Utilizing data from the 2019 Panel Study of Income Dynamic and 2019-2020 Child Development Supplements, this study conducts path analyses applied with propensity score weighting to support causal inference. Results support the family stress model framework, where food insecurity significantly predicts an increase in psychological distress in caregivers, which in turn leads to more severe child emotional problems and hyperactivity symptoms. This study also shows that food insecurity is a risk factor resulting in a reciprocal association between caregiver psychological distress and child emotional problems, where the strength of both directions is similarly harmful to each other. These findings underscore the need to address food insecurity, not only to meet material needs but also to break the harmful cycle of mental health and behavioral issues within families

Experiences of family caregivers of children living with thalassaemia-major in Karachi: a phenomenological study

IntroductionThalassaemiamajor, a global health burden, presents a growing challenge in Pakistan’s strained healthcare system. This study explores how caregivers of children with beta-thalassaemia major navigate healthcare services, aiming to identify facilitators and barriers to accessing optimal care.MethodsA qualitative interpretative phenomenological approach was employed. In-depth interviews with 18 purposively sampled caregivers from Karachi thalassaemia centres were conducted. Thematic analysis using a combined inductive-deductive approach identified themes within the interview data.ResultThe study revealed significant challenges for caregivers at individual, interpersonal and organisational levels. Lack of awareness about carrier states, limited disease knowledge, financial constraints and concerns about the child’s future emerged as primary hurdles. Parents felt helpless due to the absence of emotional and social support for their children’s treatment. Obstacles such as complicated registration processes at thalassaemia-care centres, high costs of chelating agents and blood unavailability were major barriers to seeking care and caregiving. Additionally, the study highlighted the absence of guidelines for thalassaemia-carrier detection among mothers during antenatal care.ConclusionThe study emphasised the importance of implementing premarital screening programmes due to the lack of knowledge about the disease and carrier state. To prevent the disease, it is crucial to include thalassaemia-carrier detection for mothers in antenatal guidelines and provide counselling at the primary level. Additionally, caregivers encountered treatment accessibility issues, prompting the establishment of a satellite thalassaemia centre linked to a top-tier tertiary care hospital in the public sector. This initiative addressed treatment challenges and improved overall care for patients with thalassaemia and their caregivers.

Tracking Telehealth Needs for Individuals With Sickle Cell Disease Through the COVID-19 Pandemic: A Cross-Sectional Survey Study.

Pervasive disparities characterize sickle cell disease (SCD) care, including limited access to SCD specialists. Rapid deployment of remote healthcare provision and support during the COVID-19 pandemic provides an opportunity to understand telehealth barriers/facilitators for SCD. We aimed to evaluate telehealth experiences and satisfaction for routine visits among adults and caregivers of children with SCD within a US regional collaborative. 151 adults ≥ 18 [median (IQR) = 36 (28, 43) years], and 94 caregivers [median child age (IQR) = 12 (7, 14) years] completed a 30-item online survey in 2021 assessing systems issues such as reliable Internet; health information sharing; and consumer focus (e.g., visit started on time). A multivariable logistic regression model was used to evaluate relations between independent variables and the outcome overall satisfaction with telehealth. Patients were primarily diagnosed with sickle cell anemia (60.8%) and prescribed hydroxyurea (57.6%). Satisfaction with telehealth was high (> 90%), but 60.6% of caregivers gave the highest rating compared with 44.9% of adults (p = 0.02). Few accessibility/technical issues were cited, however, caregivers reported more often having home support for telehealth (80.9% vs. 63.6%, p = 0.003). In multivariable analyses, participants seen in large centers (> 200) were more likely to give the highest satisfaction ratings compared with those in smaller centers (< 100, aOR: 2.33; 95% CI: 1.21, 4.48, p = 0.01); however, those who needed help from a telehealth navigator were less likely to give the highest telehealth experience rating versus those who did not need help (aOR: 0.37; 95% CI: 0.19, 0.71, p = 0.003). Views of telehealth were favorable, although caregivers reported greater satisfaction and resources compared with adults with SCD. It remains important to identify factors related to telehealth utilization and efficacy for SCD populations in varied geographies and settings, to ensure equity in access.

Translation, Reliability and Development of a Calculator for the Brazilian Portuguese Version of the Family Empowerment Scale (FES) in Caregivers of Individuals With Cerebral Palsy.

Care for patients with cerebral palsy (CP) poses significant challenges, with emphasis on the crucial role of family involvement in patients' well-being. The Family Empowerment Scale (FES) assesses parents/caregivers' perception of their ability to promote and influence their children's development in three domains: family, service system and community. The objectives of this study were to translate the FES into Brazilian Portuguese, to develop a calculator for data transformation and analysis and to evaluate the psychometric properties of the scale with Brazilian caregivers of children and adolescents with CP. Translation occurred in four stages: translation, synthesis, back-translation and review of the translated version. A calculator was then developed in the Excel program, to present data in absolute values and graphically for each subscale. Statistical analysis included Bland-Altman, Intraclass Correlation Coefficient (ICC), Internal Consistency, and Floor and Ceiling Effect. In total, 50 parents and caregivers participated to the measurement properties investigation, and the scale demonstrated good reliability for the family (ICC = 0.80) and services (ICC = 0.81) subscales, as well as for the overall scale (ICC = 0.88). The community subscale showed moderate reliability (ICC = 0.68), with an adequate Cronbach's alpha (0.89). The FES showed no ceiling or floor effects and a small limit of agreement. The data of all participants were analysed using the calculator. The FES-Brazilian Portuguese presented good reliability for assessing family empowerment in caregivers of children and adolescents with CP in Brazil, offering insights into this construct and guiding family-centred interventions. In addition, the calculator could be viable for adequate management and dissemination of data.

Caring for the child with a tracheostomy through the eyes of their caregiver: A photovoice study

PurposeThis qualitative descriptive study aimed to explore the daily experiences of caregivers of children with medical complexity with a tracheostomy at home. MethodsThis study used photovoice, a participatory action research methodology. Adult English-speaking caregivers of children with a tracheostomy, living in Texas, with access to a smartphone were recruited. Photographs taken by participants and an interview guide were used to guide semi-structured interviews with caregivers. ResultsEight participants were recruited. After analyzing photographs and caregiver interviews, four main themes were identified: role transition, daily challenges, finding support, and thriving in the new normal. ConclusionsCaregivers take on multiple roles, including providing medical care, advocating for their children, and educating others. While facing emotional challenges such as guilt, fear, and exhaustion, caregivers rely on external support systems, emphasizing the need for nurses and healthcare providers to provide comprehensive support and improve the accessibility of home nursing services. Practice implicationsThe findings of this study can inform nurse-led interventions and advocacy efforts aimed at supporting marginalized children with medical complexity with a tracheostomy and their families. These efforts may include enhancing communication and collaboration between families, healthcare workers, and the public, providing comprehensive, proactive support for caregivers, and improving access to home nursing services.

Caregiver-reported satisfaction with pediatric movement disorder surgery.

Patient- and surrogate-reported outcomes are increasingly recognized as important and historically limited dimensions of satisfaction with medical care. Evaluating caregiver satisfaction for cerebral palsy (CP) patients with pediatric movement disorders (PMDs) remains undefined, limited by a lack of appropriate tools and the heterogeneity of the patient population. The authors identified caregiver satisfaction with the neurosurgical management of PMDs as a key quality metric and report their results across an institutional experience. A retrospective single-institution survey study was performed on caregivers of consecutive children who underwent PMD surgery from March 2022 to December 2023. The authors designed a brief 4-question satisfaction survey with dichotomous yes/no answers. The telephone survey solicited answers from primary caregivers, and contact attempts were made 3 times before labeling a nonresponder. Non-English speakers were included. The survey answers were correlated with demographic characteristics, clinical data, and complications. Descriptive statistics were performed using Excel. Seventy patients were identified in the study period with 50 associated caregivers voluntarily responding to the questionnaire (50/70 [71.4%]). Forty-six male and 24 female patients with a mean (range) age of 13.1 (2-34) years and a follow-up range of 3-20 months were included. All 50 caregivers reported satisfaction with the surgical care their child received: 100% confirmed they would refer others to the program and 94% confirmed that they would have the surgery again in retrospect. Ten caregivers (10/50 [20%]) recalled complications, but only 5 (5/50 [10%]) surgical complications resulted in hospital readmission. Caregivers were overwhelmingly satisfied with the neurosurgical care for PMDs and would recommend the functional pediatric neurosurgery program to others. A large percentage would again submit to the surgery. There is a perception disparity between caregiver- and hospital-identified complications; it may be beneficial to emphasize expected adverse effects with caregivers prior to surgery. Caregiver satisfaction remains an important quality dimension and future research may benefit from more objective metrics.

RTS, S malaria vaccination among children aged 24–59 months in the Sunyani Municipality, Ghana; 2023

BackgroundFollowing the successful pilot of RTS,S malaria vaccine, it has been recommended by the WHO for prevention of Plasmodium falciparum malaria in children living in endemic areas. Despite the proven benefits of the malaria vaccine, uptake especially of the fourth dose, remains relatively low. We assessed complete uptake of RTS,S malaria vaccine among children 24–59 months and associated factors in the Sunyani Municipality of Ghana. MethodsA cross-sectional study was conducted among 361 caregivers of children aged 24–59 months in the Sunyani Municipality, who had received at least one dose of RTS,S malaria vaccine. Structured questionnaires were administered to caregivers and relevant vaccination information was extracted from the maternal and child health record books. Binary logistic regression analysis was used to determine factors associated with complete uptake of the vaccine at 95 % confidence interval (CI). ResultsApproximately 45 % (164/361) of the children had completed the RTS,S malaria vaccination schedule. Children aged 48–59 months (AOR:0.26, 95 %CI:0.09–0.76), those with caregivers who believed that children were being used for experiment (AOR:0.29, 95 %CI:0.16–0.54) or doubted the safety of the vaccine (AOR:0.27, 95 %CI:0.14–0.52) were less likely to complete the four doses. On the other hand, children of caregivers who reported vaccine shortages and travelled long distances to access immunization services (AOR:3.15, 95 %CI:1.17–8.47), and those with adequate knowledge on the malaria vaccine (AOR:1.89, 95 %CI:1.08–3.29) were more likely to complete the vaccination schedule. ConclusionLess than half of the children who started RTS,S malaria vaccination completed the full schedule. Age of child, caregiver knowledge and perception of the malaria vaccine, and access to immunization service were associated with complete uptake of the RTS,S malaria vaccine. Strengthening caregiver education and access to immunization services could improve uptake of the subsequent doses and coverage of the fourth dose.

Assessment of Acceptability, Usage, and Impact on Caregivers of Children With Autism's Stress and Mindfulness: Multiple-Method Feasibility Study of the 5Minutes4Myself App's Mindfulness Module.

Caregiver wellness programs need to be easily accessible to address caregivers' constraints to participation. We aimed to assess the feasibility of 5Minutes4Myself app's mindfulness module (usability, usage, and impact on caregivers' levels of mindfulness and perceived stress). Before and after participation in the 5Minutes4Myself program, 15 participants were asked to complete the Perceived Stress Scale (PSS) and Five Facet Mindfulness Questionnaire (FFMQ). Data on the usage of app-delivered meditations were collected electronically via the app, and app usability was rated on the Modified System Usability Scale. Analyses assessed participants' frequency of use of app-delivered meditations, app usability, and changes in participants' stress and mindfulness post intervention. Overall, participants completed 10.9 minutes of mindfulness meditations per week and rated the app 76.7, indicating above-average usability. Related samples t tests (2-tailed) found that group PSS (t10=1.20, P=.26) and FFMQ (t10=-1.57, P=.15) pre- or postintervention mean scores were not significantly different. However, a visualization of pre- and post-PSS and mindfulness scores suggested there was a group of responders who had decreased stress with increased mindfulness. This was confirmed via an individual change analysis. The effect size of the FFMQ scores (d=0.47) suggests there may be treatment effects with a larger sample. A hierarchical multiple regression analysis examined the degree mindfulness impacted perceived stress; 20% of the variance in participants' perceived stress could be attributed to increases in self-rated mindfulness (P=.04) when controlling for preintervention stress levels. Caregivers found the app highly usable and on average used low-dose levels of mindfulness meditations (10 min/wk). For responders, increased mindfulness was related to stress reduction to population-based levels.

Changes in care provision to older parents during COVID-19 and the well-being of adult children: The moderating roles of the child-parent relationship and pandemic-related measures

Objective: The study addresses the associations between changes in care provision to older parents since the pandemic and worsened depression and anxiety in adult children. It also explores whether pandemic-related control measures and child-parent relationships moderated these associations. Background: Changes in informal care during the pandemic, such as increased or decreased caregiving frequency, may have affected caregivers’ psychological well-being. Limited research exists on how stressors and resources shape the well-being of adult children caregivers. Method: Data from 740 respondents in the first SHARE Corona Survey (SCS) who provided care for their parents during the pandemic were analyzed. Changes in depression and anxiety were assessed using data from SCS and pre-pandemic Wave. Logistic regression analyses were conducted, with added interactions between the moderators - pandemic measures and child-parent relationship characteristics - and changes in care frequency. Results: Increased caregiving frequency during the pandemic was associated with worsened depression. Stricter pandemic measures intensified this effect but also reduced the likelihood of anxiety for those who provided care less often. A higher quality of relationship with the mother in childhood was marginally associated with lower depression among those increasing caregiving but worsened depression for those decreasing it. Conclusion: To address post-pandemic caregiving challenges, efforts should focus on reducing caregiver stress and considering the enduring influence of early child-parent relationships.

Self-Reported COVID-19 Vaccine Status and Barriers for Pediatric Emergency Patients and Caregivers

Objective: This study determined if the caregivers of children in the emergency department (ED) have the same COVID-19 vaccination status as the child, the reasons they chose to not vaccinate the child, and self-identified barriers to vaccination to determine if the ED is appropriate for vaccination intervention. Methods: A survey was administered to caregivers of pediatric ED patients at four Children’s Hospitals in: Augusta, GA, Buffalo, NY, Madison, WI, and Sacramento, CA. Participants were asked about their and the child’s demographics, vaccination status, and barriers to vaccination. We used descriptive statistics, Cohen's kappa, and logistic regression to analyze responses. Results: 941 caregivers were considered for enrollment, and 800 consented to participation. Participants were 75% women with a mean age of 40.9 ± 8.9 years. 51% (409) of the pediatric ED patients were COVID-19 vaccinated, as were 74% (591) of the caregivers. There was variation across sites, but overall, 15% of caregivers of unvaccinated children wanted the child tobe vaccinated with the most common barriers to vaccination identified as safety data (25%), time availability (20%), and ability to obtain an appointment (13%). The most common reason for not wanting the child COVID-19 vaccinated was concern the vaccine didn’t work or had too many side effects. Conclusion: A small but clinically important group of pediatric ED patients are not COVID-19 vaccinated but their caregivers want them to be vaccinated, indicating that consideration should be given to offering vaccination in the ED. Reasons for avoiding COVID-19 vaccination were primarily concerns with efficacy and side effects.

An item bank to measure health-related quality of life among young children (0-5-years-old) affected by respiratory illnesses – expert stakeholders and end-users from the Western Cape, South Africa

BackgroundHealth-related quality of life (HRQoL) is a crucial patient-centred outcome for developing policy. However, there is a lack of appropriate HRQoL measures for young children (0-5-years), who are particularly vulnerable to respiratory illnesses like pulmonary tuberculosis (PTB) and other respiratory infections, especially in low- and middle-income countries (LMICs). We aimed to develop a disease-specific HRQoL item bank for young children with acute and chronic respiratory illnesses.MethodsAn exploratory sequential design with three phases was used to develop a HRQoL item bank. The content validity of the item bank was evaluated by local and international experts specialising in HRQoL and child health. The group included paediatric pulmonologists, researchers with expertise in respiratory illnesses, and experts in scale development. Cognitive interviews with 37 caregivers of children with TB, pneumonia, adenovirus respiratory infection, other lower respiratory tract infections, reactive airway disease, and protracted bronchitis in Cape Town, South Africa, and consultations with 22 stakeholders were conducted for final revisions. The item bank was progressively refined at each phase of the study.FindingsThe Delphi experts recommended dividing the item bank into two age groups (0-2-years and 3-5-years) and using a 5-point Likert scale. Overall, 41 items (42%) met the predetermined > 70% threshold for inclusion in the item bank. Cognitive interviews confirmed that the domains were relevant. Minor modifications were made to five items in cohort 1 (0-2-years) and seven in cohort 2 (3-5-years), with 8 items (13%) and 14 items (22%) excluded. Phase 3 consultations emphasised the importance of including all seven domains and expanding the items to cover early childhood development, play, social interactions, and care routines. The final item bank includes versions for both age groups and incorporates these refinements.ConclusionAn item bank was developed as a first step to develop a comprehensive disease-specific HRQoL tool for young children with respiratory illnesses in an LMIC. Input from caregivers and content experts was crucial in creating two HRQoL item banks tailored to the developmental differences between 0 and 2 and 3-5-year age groups. Their contributions ensured the tool effectively captures age-appropriate aspects of HRQoL. Future studies should focus on assessing the validity and reliability of these item banks.

Systematic review of burden&amp;quality of life in caregivers of children with schizophrenia (SyREN)

Abstract Background Schizophrenia is a chronic, disabling disorder that affects 23.6 million people worldwide, with patients often needing extensive assistance and care. Main caregivers are frequently family members who may present a reduced quality of life (QoL) due to the high-level burden of care. Literature mostly focuses on the burden caused by other mental disorders or by schizophrenia in both the adult and child population. We aim to assess the burden and QoL in caregivers of children and adolescents with schizophrenia. Methods We conducted a Systematic Review of articles published between 2013 and 2023 on MEDLINE, Scopus, Web of Science, APA PsycARTICLES, CINAHL. We included studies in which a validated instrument was used to measure the burden of caregiving and QoL for adult caregivers of children and adolescent schizophrenic patients. The results were reported following the PRISMA guidelines. Results We identified 1388 studies. We removed 610 duplicates. After screening 788 studies on title and abstract and 52 for full-text, we included one cross-sectional study in China based on the STROBE Checklist. Significant correlations between burden of care and schizophrenia severity, children’s age, period of care, education, sex, residence, and income were reported. Additionally, we screened 7 qualitative studies. Social stigma and struggle were the most frequently reported feelings, and financial burden was the most common external factor associated with a worse quality of life. Conclusions This review revealed a significant research gap in this field. This lack of focused research underscores the urgent need for targeted investigations into the experiences of caregivers of children and adolescents with schizophrenia. Addressing these knowledge gaps will improve support systems and interventions tailored to the unique needs of this population, such as disease-specific advisory, mental health services, social and financial support, and self-help groups. Key messages • We identified a research gap for burden and quality of life in informal caregivers of children with schizophrenia. Education, sex and income of caregivers relate to the burden of care. • Further research is needed to develop strategies to improve support systems and interventions tailored to the unique needs of this population.

Preventing unintentional injuries in children: the parents’ beliefs matters (CHILD Vigilance)

Abstract The CHILD Vigilance project is a European study supported by the Injury Prevention &amp; Safety Promotion Section of the European Public Health Association (EUPHA INJ) and aims at assessing parenting knowledge and attitudes that are relevant to supervision and risk taking in children. For children the majority of these injuries occur in or around the home when their safety is the responsibility of a parent or other caregiver. The study aims contribute to the epidemiological knowledge of injuries through the study of the perceptions of parents and caregivers of children and adolescents. A descriptive, observational, cross-sectional study was developed under the CHILD Vigilance project, developed at European level within the scope of the Injury Prevention &amp; Safety Promotion Section of the European Public Health Association. The information was collected by survey, from parents’ associations and schools in the EU countries represented in the EUPHA INJ Section. A total of 916 valid responses were obtained, involving 1229 children (51,4% male; mean age 7,8 years). Falls were perceived as the most common type of unintentional injuries in pre-schoolers and school-age children (47,8% in Greece; 63,5% in Portugal; 74,8% in Lithuania). However it was found differences in these countries as to the most common type of injury in adolescents, pointing out road traffic crashes (41.2% in Greece vs 39.5% in Portugal) and poisonings in Lithuania (38,1%). Some differences were also observed between these countries as to the most common causes of death. In Greece and Lithuania diseases were reported the main cause in the pre-schoolers (62,5%; 35,1%) and in primary education (55,1%; 29,7%), being injuries pointed as the most frequent cause only in the oldest. The study emphasizes the need to invest in the identification of appropriate determinants of child unintentional injuries and harmonised injury outcomes across global initiatives. Key messages • The lack of data regarding to parents’ knowledge on injury prevention involving children highlight the need to conduct this type of studies. • The need for adequate epidemiological data on the burden of child injuries and validated tools to accurately measure injuries.