Child Care Research Articles

Effects of autism spectrum disorder on parents labour market: Productivity loss and policy evaluation in Kazakhstan.

Kazakhstan has witnessed a significant increase in the number of Autism Spectrum Disorder cases due to the implementation of mechanisms for early detection. However, despite these efforts, accessing quality services and effective interventions for individuals with Autism Spectrum Disorder remains challenging. While the government has implemented various policies to address the impact of Autism Spectrum Disorder on the labour market, especially for those with disabilities, the effectiveness of these policies needs to be evaluated. Therefore, this article aims to estimate the loss of productivity by calculating the cost of non-working for parents of children with Autism Spectrum Disorder. To achieve this goal, we combine data from official sources with data from our own survey to estimate the loss of productivity using human capital models. In addition, we conduct policy simulations to assess the impact of the existing policy implemented in Kazakhstan that recognises the time of caring for children with Autism Spectrum Disorder and disability as working in the paid labour market. Our results reveal that the productivity loss is substantial, with mothers of children with Autism Spectrum Disorder being particularly affected. Furthermore, based on the outcomes of the policy simulations, it becomes evident that policies solely targeting parents of children with Autism Spectrum Disorder and disability are insufficient to address the labour market gaps and the consequent loss of productivity. To effectively mitigate the impact of Autism Spectrum Disorder in the labour market, a more comprehensive approach is needed. This approach should encompass a broader range of interventions and support mechanisms, including those for individuals without disabilities and parents of children with Autism Spectrum Disorder.

The cost of care for children hospitalized with respiratory syncytial virus (RSV) associated lower respiratory infection in Kenya

BackgroundRespiratory syncytial virus (RSV) is one of the main causes of hospitalization for lower respiratory tract infection in children under five years of age globally. Maternal vaccines and monoclonal antibodies for RSV prevention among infants are approved for use in high income countries. However, data are limited on the economic burden of RSV disease from low- and middle-income countries (LMIC) to inform decision making on prioritization and introduction of such interventions. This study aimed to estimate household and health system costs associated with childhood RSV in Kenya.MethodsA structured questionnaire was administered to caregivers of children aged < 5 years admitted to referral hospitals in Kilifi (coastal Kenya) and Siaya (western Kenya) with symptoms of acute lower respiratory tract infection (LRTI) during the 2019–2021 RSV seasons. These children had been enrolled in ongoing in-patient surveillance for respiratory viruses. Household expenditures on direct and indirect medical costs were collected 10 days prior to, during, and two weeks post hospitalization. Aggregated health system costs were acquired from the hospital administration and were included to calculate the cost per episode of hospitalized RSV illness.ResultsWe enrolled a total of 241 and 184 participants from Kilifi and Siaya hospitals, respectively. Out of these, 79 (32.9%) in Kilifi and 21(11.4%) in Siaya, tested positive for RSV infection. The total (health system and household) mean costs per episode of severe RSV illness was USD 329 (95% confidence interval (95% CI): 251–408 ) in Kilifi and USD 527 (95% CI: 405– 649) in Siaya. Household costs were USD 67 (95% CI: 54–80) and USD 172 (95% CI: 131– 214) in Kilifi and Siaya, respectively. Mean direct medical costs to the household during hospitalization were USD 11 (95% CI: 10–12) and USD 67 (95% CI: 51–83) among Kilifi and Siaya participants, respectively. Observed costs were lower in Kilifi due to differences in healthcare administration.ConclusionsRSV-associated disease among young children leads to a substantial economic burden to both families and the health system in Kenya. This burden may differ between Counties in Kenya and similar multi-site studies are advised to support cost-effectiveness analyses.

Simulation Education in Pediatric Surgery

Simulation education in pediatric surgery using laparoscopic simulators and virtual reality glasses Kyalio VR surgical training increases the efficiency of surgeon training, reduces the time of adaptation to real operations and improves the quality of medical care for children.

The nutritional and feeding status of children living in selected residential child care facilities in Zambia: implications for programs and policies.

This study aimed to estimate the prevalence of undernutrition and risk of feeding difficulties and describe common feeding practices for children from birth to 10 years of age living in residential care in Zambia. This was a secondary analysis of de-identified cross-sectional data on 397 children living in 22 residential care facilities in four provinces. Child demographics, anthropometrics, hemoglobin levels, risk for feeding difficulties, and facility-level feeding practices were collected by a trained study team using Count Me In, a digital health app. Interviews with staff were conducted at 15 residential care facilities. Around half of the study sample were boys (53.4%) and <5 years old (55.4%). Special healthcare needs were reported in 10.3% of the children, with cerebral palsy being the most common (3.5%). Underweight, stunting, wasting (using weight-for-length/height), and anemia were found in 22.4, 28.0, 7.1 and 54.7% of children, respectively, with higher rates in children with special healthcare needs and children <24 months old. Duration of residential care was positively associated with length/height-for-age but not weight-for-age or weight-for-length/height z-scores. A risk for feeding difficulties was found in 41.4 and 26.0% of children with and without special healthcare needs, respectively. Suboptimal bottle-feeding practices, including the use of altered nipples and poor caregiver-infant interactions, were observed for infants <12 months old. Residential care staff reported suboptimal diets in their facilities and gaps in knowledge and resources to meet children's nutritional needs. These results demonstrate that a large proportion of children living in residential care in Zambia are at high risk for undernutrition and feeding difficulties and contribute to the small body of literature on children living in residential care, both in Zambia and globally. In the context of Zambia's efforts to improve child nutrition and reform its alternative care, these findings can inform programming and policies for children living in residential care to fulfill their rights to health and family care.

Neurological Symptoms and Cause of Death Among Young Children in Low- and Middle-Income Countries

The emergence of acute neurological symptoms in children necessitates immediate intervention. Although low- and middle-income countries (LMICs) bear the highest burden of neurological diseases, there is a scarcity of diagnostic and therapeutic resources. Therefore, current understanding of the etiology of neurological emergencies in LMICs relies mainly on clinical diagnoses and verbal autopsies. To characterize the association of premortem neurological symptoms and their management with postmortem-confirmed cause of death among children aged younger than 5 years in LMICs and to identify current gaps and improve strategies to enhance child survival. This cross-sectional study was conducted between December 3, 2016, and July 22, 2022, at the 7 participating sites in the Child Health and Mortality Prevention Surveillance (CHAMPS) network (Bangladesh, Ethiopia, Kenya, Mali, Mozambique, Sierra Leone, and South Africa). Minimally invasive tissue sampling was performed at the CHAMPS sites with specimens from deceased children aged younger than 5 years. This study included deceased children who underwent a premortem neurological evaluation and had a postmortem-confirmed cause of death. Data analysis was performed between July 22, 2022, and January 15, 2023. Descriptive analysis was performed using neurological evaluations from premortem clinical records and from postmortem determination of cause of death (based on histopathology, microbiological testing, clinical records, and verbal autopsies). Of the 2127 deaths of children codified during the study period, 1330 (62.5%) had neurological evaluations recorded and were included in this analysis. The 1330 children had a median age of 11 (IQR, 2-324) days; 745 (56.0%) were male and 727 (54.7%) presented with neurological symptoms during illness before death. The most common postmortem-confirmed neurological diagnoses related to death were hypoxic events (308 [23.2%]), meningoencephalitis (135 [10.2%]), and cerebral malaria (68 [5.1%]). There were 12 neonates with overlapping hypoxic events and meningoencephalitis, but there were no patients with overlapping meningoencephalitis and cerebral malaria. Neurological symptoms were similar among diagnoses, and no combination of symptoms was accurate in differentiating them without complementary tools. However, only 25 children (18.5%) with meningitis had a lumbar puncture performed before death. Nearly 90% of deaths (442 of 511 [86.5%]) with neurological diagnoses in the chain of events leading to death were considered preventable. In this cross-sectional study of children aged younger than 5 years, neurological symptoms were frequent before death. However, clinical phenotypes were insufficient to differentiate the most common underlying neurological diagnoses. The low rate of lumbar punctures performed was especially worrying, suggesting a challenge in quality of care of children presenting with neurological symptoms. Improved diagnostic management of neurological emergencies is necessary to ultimately reduce mortality in this vulnerable population.

Child care as the basis of attitude to the problem of his health

Child care is an academic discipline that underlies the implementation of numerous recommendations developed in neonatology, pediatrics, hygiene and epidemiology, infectious diseases, nursing, etc. The article returns readers of the magazine «Мeditzinskaya sestra/Nurse» to a broad perception of the problem of caring for a child as the basis of his upbringing and treatment. Innovations and implementation of modern innovative technologies are considered with an emphasis on early ages. Many new trends relate to the issues of automating the care process in hospitals and «saving» resources. Another charge of criticism regarding the ideology of natural parenthood. Responsible care is the basis of preventive pediatrics. It is important to consciously understand what and why relates to measures that ensure health for a modern child.

Bone fragility in young people: significant anamnestic elements

Various factors are known to interfere with gain in bone density and structure during growth and development. Bone status in childhood has been shown to be a predictor of bone mass in young adulthood. This concise review aims to discuss the main factors that can influence peak bone mass during growth and development, and whether they may be predictors of future bone fragility risk, useful for physicians taking care of children and adolescents. KEY WORDS: Children and adolescent bone health, peak bone mass, predictors of bone fragility, osteoporosis prevention.

Pengaruh Peranan Orang Tua dan Motivasi Belajar Siswa terhadap Hasil Belajar Mata Pelajaran Pai Siswa Kelas VII di SMP Islam Al-Qudwah Cibinong Bogor

This research was conducted to answer problems, first, what is the role of parents in learning outcomes. second, what is the student's learning motivation in PAI subjects, Research uses quantitative descriptive, namely the method used to research certain populations and samples, data collection uses research instruments, data analysis is quantitative/statistical, with the aim of testing predetermined hypotheses, based on The results of the analysis show firstly that the influence of the role of parents on student learning outcomes is 0.368 (36.8%). This means that the parental role variable (X1) has a significant and positive effect on the student learning outcome variable (Y). second. The influence of student learning motivation on student learning outcomes is 0.436 (43.6%). This means that the student learning motivation variable (X2) has a significant and positive effect on the student learning outcome variable (Y). Third, the coefficient of determination (R square) is 0.241 or 24.1%. This means that it can be concluded that 24.1% of student learning outcomes are determined by the role of parents and student learning motivation, while the remaining 75.9% is influenced by variance in other variables not explained in this research. Based on these findings, it is recommended that schools should pay more attention to parents by always socializing to encourage parents to continue and increase their attention to the motivation of children's learning activities, both in terms of providing guidance, advice, encouragement, supervision, and equipment for children's learning facilities, as well as fostering a harmonious relationship with their children, so that children will be motivated and can improve their learning outcomes, which in the end will result in satisfactory learning outcomes that meet expectations.

COVID-19 School Closures Were Associated With A Decline In Employment For Female Nurses With Young Children.

COVID-19-related school closures may have had unintended consequences affecting the ability of health professionals with school-age children to work-particularly female professionals, who often have disproportionate child care responsibilities. We combined labor-force participation data from the Current Population Survey with measures of school closures based on cell phone mobility data to examine the association between local school closures and labor supply among female nurses during the COVID-19 pandemic. During the six months after large-scale closure of schools at the end of the 2019-20 school year (March-August2020), among counties with above-median school closure rates, the employment rate of female nurses with young children declined by 12.5percentage points versus the rate during the prior four months (November2019-February2020); the change in the employment rate in below-median counties was not statistically significant. No statistically significant changes were observed among female nurses who had only older children or among male nurses. During public health emergencies, policies should consider how disruptions to schooling may affect the labor supply of health care professionals. Strategies might include direct provision of child care by health care facilities, subsidies and other aid to child care centers, or subsidies to health care workers for affordable child care.

Ambivalent Purview of Kinship Care: Insights from Stakeholders

The realm of alternative care for children covers a variety of care systems, which include residential care, small group homes, mother and child shelters, transit homes, adoption, foster care and kinship care. The United Nations General Assembly’s 2019 resolution on children’s rights emphasises the significance of family-based environments for children, particularly those without parental care, and underlines their right to grow up in a family setting. In light of this resolution, kinship care emerges as a crucial family-based care avenue for children lacking parental care. In India, kinship care stands as the predominant form of care for children lacking sufficient parental support and is the most common form of care in almost all regions, religions, castes and ethnic groups due to the tradition of the joint family system and close ties among relatives. While this care option is the most common form of out-of-home care, it is also the least systematically recorded, monitored or supported structure. The study, through the lens of kinship carers, ward and village-level child protection committees and community workers, focuses on the important aspects of support, motivation, love, responsibility and challenges that underlie providing care for children without parental care. This qualitative study employs ethnographic interview techniques to understand the most authentic experiences of kinship carers. Families were initially identified based on secondary data captured from the assessment and intervention planning done using the Thrive Scale™ tool as part of the case management process. Subsequently, semi-structured interviews were conducted with six families from two different communities (one urban community in the state of Maharashtra and one rural community located in the state of Gujarat in India) to assess the existing support structures available for kinship carers and their families, identifying gaps and measures being taken to address them to ensure meaningful well-being of children and kinship families. The study discusses various challenges of kinship families, from financial struggles to familial disconnection, lack of housing infrastructure or access to healthcare, family issues like alcoholism or child labour, lack of education or livelihood and social isolation. The study further recommends increased attention and resources directed towards supporting kinship carers, acknowledging their invaluable role in providing love, support and stability to children without parental care, and also emphasises the importance of recognising and formalising kinship care within a broader framework of alternative care for children. Miracle Foundation India is committed towards ensuring that every child has an opportunity to grow up in a family, to become a healthy, happy, income-producing person and to experience a true sense of belonging. The paramount significance of kinship care is recognised by Miracle India in its sphere of both the prevention of child separation from family and reintegration work. After a thorough assessment of these families on the five key domains of well-being—physical and mental health, education, family and social relationships, household economy and living conditions—and continuous monitoring and follow-up, Miracle India provided a comprehensive support service to these families, strengthened them and ensured sustained access to support services, ultimately promoting child welfare. During this study, the focus remained on prioritising the implementation of supportive policies and resources for kinship caregivers to ensure that every child in vulnerable circumstances thrives within the warmth and stability of a loving and caring family.

Understanding the roles and challenges of child protection employees in out-of-home care arrangements for children of minority and immigrant backgrounds in Rogaland, Norway

ABSTRACT The study was designed to understand the roles and challenges of child protection services (CPS) employees in arranging out-of-home care for children with minority and immigrant backgrounds in Rogaland, Norway. Findings from the six in-depth interviews with CPS employees showed that, guided by existing laws and policies, they follow three phases from investigation to the care order decision. The premium they place on “best-interests-of-children” can be contested in relation to the rights of the family. CPS employees day-to-day challenges include understanding minority families cultural backgrounds, finding foster families, and communication. Based on the findings, policy and practice recommendations are made.

Establishing a Graft-Versus-Host Disease (GVHD)-Focused Multidisciplinary Telehealth Clinic

Graft-versus-host disease (GVHD) is a complication following allogeneic hematopoietic cell transplant that frequently causes multiorgan affection and decrease in quality of life. Global assessment and care of these patients require a multidisciplinary approach, but access to focused clinics is limited given their scarcity and location in major cities, as well as mobility and transportation challenges that frequently affect these patients. Thus, we established a multispecialty GVHD telehealth (TH) clinic and hypothesized that a virtual platform will expand access to clinical care in children and adults. The clinic team members included BMT specialist, nursing, dermatologist, dentist, nutritionist, physiatrist, research personnel, and others as needed. We evaluated all GVHD-related visits (in-person and TH) conducted in a single center from 01/2022 to 12/2022. Ninety-three patients received a total of 308 visits, and one-third were via TH. Approximately half of the in-person group had at least 1 TH visit, and 10 patients were seen exclusively via TH. Most patients had advanced chronic GVHD. More male patients were seen in GVHD clinic, but female patients had increased in clinic visits via TH (41% TH versus 32% in-person). One-third of clinic visits were from patients of racial and ethnic minorities. While only 6% (n = 12/217) of in-person visits were for patients living >100 miles from the center, 34% (n = 31/91) of TH visits were from far distances including out-of-state. At baseline, the most common patient-reported symptoms in a subset of patients included fatigue, disturbed sleep, and distress. Fifteen patients completed a follow-up symptom survey and reported significantly reduced distress regarding their GVHD (P = .02), although other symptoms remained stable. A multidisciplinary TH clinic provided care for adult and pediatric patients with GVHD. We demonstrated preliminary feasibility of building a robust TH platform with a collaborative multispecialty approach that allowed access and continuity of medical care. Gender inequalities were reduced, and distance to our center represented a lesser barrier to attending specialized care via TH. Additionally, patients reported a significant reduction in distress. Our findings support the ongoing development of a virtual platform to improve access to specialized GVHD care.

Integrating Emotional Health Assessments into Pediatric Care: Initial Learnings from an MOC Part 4 Activity

Introduction: Living with a chronic condition often impacts the emotional health of children. Pediatricians frequently feel unprepared to address these concerns. The American Board of Pediatrics Roadmap Project aims to support these clinicians. We describe the results from the initial cohort of pediatricians who completed the American Board of Pediatrics Maintenance of Certification (MOC) Roadmap Part 4 activity. Methods: The Roadmap MOC activity uses a standardized improvement template with accompanying resources to guide participants. Physicians self-assess their ability to provide emotional health support by completing a Roadmap Readiness Checklist and creating a personal project relevant to their practice. They collect data at three time points: baseline, midpoint, and completion for two measures (the Readiness Checklist and a participant-selected measure). Physicians also reflect on their experience. Results: Of the initial cohort of 29 physicians, 22 submitted three sequential checklist assessments. Scores increased for “developing a family resource list” (by 90%), “confidence to address emotional health” (79%), “having a family crisis plan” (78%), and “staff awareness” (34%). Twenty-four physicians who measured whether clinical encounters addressed emotional health documented an increase from 21% to 77%. Physician feedback was positive, for example, “This project has had a profound impact on our care of children.” Conclusions: This initial cohort of participants improved on the Readiness Checklist and emotional health assessment. Both generalist and subspecialty pediatricians found the activity useful and relevant, suggesting that this MOC Part 4 activity is a feasible resource for supporting physicians in addressing emotional health.

How do gait outcomes evolve in adults with spastic cerebral palsy who received orthopedic care in childhood?

How do gait outcomes evolve in adults with spastic cerebral palsy who received orthopedic care in childhood?

Harnessing Natural Language Processing to Assess Quality of End-of-Life Care for Children With Cancer.

Data on end-of-life care (EOLC) quality, assessed through evidence-based quality measures (QMs), are difficult to obtain. Natural language processing (NLP) enables efficient quality measurement and is not yet used for children with serious illness. We sought to validate a pediatric-specific EOLC-QM keyword library and evaluate EOLC-QM attainment among childhood cancer decedents. In a single-center cohort of children with cancer who died between 2014 and 2022, we piloted a rule-based NLP approach to examine the content of clinical notes in the last 6 months of life. We identified documented discussions of five EOLC-QMs: goals of care, limitations to life-sustaining treatments (LLST), hospice, palliative care consultation, and preferred location of death. We assessed performance of NLP methods, compared with gold standard manual chart review. We then used NLP to characterize proportions of decedents with documented EOLC-QM discussions and timing of first documentation relative to death. Among 101 decedents, nearly half were minorities (Hispanic/Latinx [24%], non-Hispanic Black/African American [20%]), female (48%), or diagnosed with solid tumors (43%). Through iterative refinement, our keyword library achieved robust performance statistics (for all EOLC-QMs, F1 score = 1.0). Most decedents had documented discussions regarding goals of care (83%), LLST (83%), and hospice (74%). Fewer decedents had documented discussions regarding palliative care consultation (49%) or preferred location of death (36%). For all five EOLC-QMs, first documentation occurred, on average, >30 days before death. A high proportion of decedents attained specified EOLC-QMs more than 30 days before death. Our findings indicate that NLP is a feasible approach to measuring quality of care for children with cancer at the end of life and is ripe for multi-center research and quality improvement.

CELEBRATE Feeding: A Responsive Approach to Food and Feeding in Early Learning Settings.

Early learning and child care (ELCC) settings in Canada follow nutrition standards that outline food provisions, with many also encouraging responsive feeding practices that help to create a supportive environment for children. Caregivers who lack confidence in children's ability to regulate their own intake, or those who feel stressed about mealtime, may unknowingly engage in less responsive feeding practices. The CELEBRATE Feeding Approach is a flexible framework, driven by behaviour change theory, that builds on previous definitions and concepts of responsive feeding in ELCC environments. Through this approach, there is an intentional focus on supporting early childhood educators to implement feeding practices that are more responsive. The approach incorporates 13 target educator behaviours related to the three overlapping categories of CELEBRATE language, CELEBRATE Mealtime, and CELEBRATE Play. These practices recognize and support the development of a child's sense of autonomy, confidence, and self-regulation not only at mealtimes but also through play-based exploration and language that is used throughout the day around food and feeding. The goal is that children will be open to a wide variety of food, develop their self-regulation skills, and build the foundation for a positive relationship with food throughout their lifetime.

Bias, Prejudice, Discrimination, Racism, and Social Determinants: The Impact on the Health and Well-Being of Latino Children and Youth

This narrative review focuses on the impact of bias, prejudice, discrimination, racism (BPDR), social determinants of health, and structural racism on Latino children’s health and well-being. The race/ethnicity, country of origin, immigrant/generational status, limited English proficiency (LEP), acculturation level, and social class of Latino children and their parents can heighten or modify the impact of BPDR. These differences have been shown to affect BPDR among Latino adults and presumably for their children. Surveys of Latino adolescents reveal that 60% have experienced discrimination, with first- and second-generation teens having a higher prevalence. These experiences are magnified by adverse social determinants/structural racism. BPDR can impact Latino children prenatally through adolescence. Bias involving neonatal, primary, and inpatient pediatric services has been reported. In 2021, Latino children were 19% less likely to complete preventive care, and 32% of LEP children had no medical home. School-age Latino children experience system inequities associated with chronic physical and mental health conditions. BPDR is also seen in educational performance but can be buffered by a strong racial/ethnic self-identity. To address BPDR/structural racism for Latino children, we suggest pediatricians: 1) increase the Latino child-health workforce to address BPDR internally and externally, 2) advocate for data collection on and monitoring of Latino children’s disparities and racism metrics in pediatric services, to improve quality of care for Latino children and their families, and 3) advocate for child health equity. Together, these steps will help eliminate BPDR for Latino children and ensure they obtain their full potential.

Barriers to auditory brainstem response testing under anesthesia

ObjectiveAuditory brainstem response (ABR) testing is the gold standard for diagnosis of hearing loss in children who cannot complete behavioral audiometry. Testing under general anesthesia is often recommended when natural sleep ABR and/or behavioral audiometry are unsuccessful. This study aims to determine which demographic and patient factors serve as barriers to receiving this diagnostic testing. MethodsA retrospective chart review from an internal database of patients who underwent ABR testing under anesthesia from 2017 to 2023 was completed. Patient demographics, clinical diagnoses, dates of initial recommendation, and dates of testing were recorded. ResultsA total of 395 patients met inclusion criteria, with a median time from initial evaluation to successful ABR under anesthesia of 5.1 months (range 0.1–209 months). This time was significantly higher in patients with public insurance compared to private insurance and in patients with the following medical complexities: cardiac disease, developmental delay, neurologic disease, eye disease, and genetic syndromes not associated with hearing loss. The interval was significantly shorter in patients with abnormal ear anatomy. ConclusionPatient factors, such as insurance type and certain medical diagnoses, may lead to delayed ABR testing under anesthesia and thus delayed diagnosis and management of hearing loss. This has implications for the timely care and treatment of children with hearing loss.

Using the hybrid undesirable network data envelopment analysis model to evaluate the efficiency of Taiwan’s social care system

In this study, a hybrid undesirable network data envelopment analysis model is developed for assessing the efficiency of social care systems. Studies investigating the performance of social care activities have mostly focused on a single social care type. To date, no study has proposed an integrated framework for assessing social care performance. To address this gap in the literature, the developed model incorporates four divisions for a comprehensive performance measurement: disability care, child and youth care, women care, and elderly care. In the model, the government’s expenditure on social care is the initial input, and the efficiency of social care activities in the aforementioned four divisions is evaluated in the second stage. Social care facilities and social care workers serve as the nonradial input and radial input, respectively. Care recipients and those affected by violence serve as the desirable output and undesirable output, respectively, in the second stage. The empirical results have several practical implications for Taiwan’s social care system.

Types and aspects of support that young carers need and value, and barriers and enablers to access: the REBIAS-YC qualitative study.

Many children and young people in England provide support to family members who are disabled, have mental or physical ill health, or misuse drugs or alcohol. Providing care can negatively impact children and young people's education, employment, health and social participation, with associated costs. Support is needed to prevent and reduce these negative impacts. The study sought to provide new knowledge and address prior research gaps regarding how best to support young carers from their perspective and that of the people they care for. To address the following questions: What types, components or features of services and other support are seen as helpful, valued, and acceptable to young people who look after someone at home and the people they support? Conversely, what is found to be less or unhelpful? What additional support is perceived as needed? What are the barriers experienced by young and young adult carers in seeking and accessing services for themselves or the person they support? What are the barriers and facilitators for practitioners in providing support and services perceived as valued, helpful and needed by young and young adult carers and the people they support? In-depth qualitative methodology using focus groups, in-depth semistructured interviews and workshops in four localities in England. One hundred and thirty-three carers aged 9-25 years with a range of caring and life circumstances and sociodemographic characteristics. Seventeen adult care recipients (parents) with a range of physical and/or mental healthcare and support needs. Nineteen practitioners from schools, colleges, young carers organisations, voluntary sector services, mental health services, the National Health Service, adult social care and local authority adult and children's social care commissioners. The types and aspects of support that young carers and their families need, and value when received, include: support that reduces or removes their practical and emotional caring responsibilities; support to mitigate the negative impacts of care and help with other life issues; information and advice about services and wider resources and support; someone trusted available to talk to; greater awareness, recognition and understanding; and choice, flexibility, and co-development of plans and solutions. We found a great deal of unmet need for support, and variation in type and quality of support received, including geographically. Potential limitations are that we were not able to engage with, or recruit, young carers from some intended subgroups, meaning some perspectives are missing. Partly because of COVID-19 measures during the study, we mainly recruited through young carers organisations and their family projects, although this was balanced by recruitment through schools and extensive outreach and engagement by the collaborating organisations prior to the project starting. Action is now needed to consistently and sustainably implement the types of support that young carers and the people they care for say they need and value. Future work should include more research from the perspectives of young carers and the people they care for, especially from particularly marginalised groups; and research to understand what works and how to improve implementation of the support needed and valued. This study is registered as Current Controlled Trials ISRCTN13478876. https://doi.org/10.1186/ISRCTN13478876. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129645) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 36. See the NIHR Funding and Awards website for further award information.