Parent Interviews Research Articles

Family history of psychiatric conditions and development of siblings of children with autism.

Younger siblings (SIBS) of children with autism exhibit a wide range of clinical and subclinical symptoms including social, cognitive, language, and adaptive functioning delays. Identifying factors linked with this phenotypic heterogeneity is essential for improving understanding of the underlying biology of the heterogenous outcomes and for early identification of the most vulnerable SIBS. Prevalence of neurodevelopmental (NDD) and neuropsychiatric disorders (NPD) is significantly elevated in families of children with autism. It remains unknown, however, if the family history associates with the developmental outcomes among the SIBS. We quantified history of the NDDs and NPDs commonly reported in families of children with autism using a parent interview and assessed autism symptoms, verbal, nonverbal, and adaptive skills in a sample of 229 SIBS. Multiple regression analyses were used to examine links between family history and phenotypic outcomes, whereas controlling for birth year, age, sex, demographics, and parental education. Results suggest that family history of schizophrenia, depression, anxiety, bipolar disorder, and intellectual disability associate robustly with dimensional measures of social affect, verbal and nonverbal IQ, and adaptive functioning in the SIBS. Considering family history of these disorders may improve efforts to predict long-term outcomes in younger siblings of children with autism and inform about familial factors contributing to high phenotypic heterogenetity in this cohort.

Developmental Assessment in Children at Higher Likelihood for Developmental Delays - Comparison of Parent Report and Direct Assessment.

Accurate assessment of cognitive development of young children is a vital component of developmental evaluations. Direct assessment of developmental skills is not always feasible, but there is limited information on the agreement between direct assessment and caregiver-reported cognitive skills. There is limited information regarding the accuracy of the parent-reported Developmental Profile 4 (DP-4) in comparison to the widely-used developmental measure, the Bayley Scales of Infant and Toddler Development, Fourth Edition (Bayley-4). The purpose of the current study was to evaluate whether a standardized parent interview can effectively identify children at risk for cognitive developmental delays. We compared the agreement between the Bayley-4 Cognitive and the Developmental Profile 4 (DP-4) in young children being evaluated in-person for early developmental delays. 182 children (134 with an autism diagnosis), ages 6-42 months, completed both assessments. Results showed that Bayley-4Cognitive scores had a moderately strong correlation with DP4-Cognitive scores (r = 0.70, p < 0.001). A cutoff of 70 or 69 on the DP-4 Cognitive was determined as ideal for identifying developmental delay based on diagnosis of global developmental delay or the Bayley-4 Cognitive. Our analyses revealed good agreement between DP-4 and Bayley-4 Cognitive scores, even after controlling for confounding variables such as degree of ASD characteristics, age, and sex. These results suggest that caregiver-report measures can be a valid and useful tool in the assessment of young children, particularly when direct developmental assessment is not feasible.

Perceived acceptability and appropriateness of a web-based program targeting risk for anxiety in young children and their parents

Abstract Objective This mixed-methods study examined perceived acceptability and appropriateness of a novel digital mental health program targeting anxiety risk (i.e., perfectionism or error sensitivity) in 5-to-7-year-old children and their parents. Methods Parent–child dyads participated in a modular, web-based cognitive-behavioral program targeting negative overreactions to making mistakes. The program, “Making Mistakes”, consisted of a 6-month series of short video clips, journaling activities, and weekly reminders, and modules were delivered to caregivers and children separately. 86 dyads completed self-report measures, 18 of whom participated in semi-structured interviews, following completion of the primary program module. A standard thematic analysis was used to elucidate themes from the parent and child interview content. Results Our quantitative and qualitative results were generally aligned. Children and parents viewed the novel digital mental health program as acceptable and appropriate, favoring the cognitive behavioral strategies such as modeling positive reactions to mistakes, responding positively to child mistakes, and emphasizing effort over outcome. Participants also provided helpful feedback related to program content, delivery, and engagement, as well as suggestions to enhance the program. Conclusions Findings have implications for design and content features of parent-based and dyad-based programs, as well as digital mental health programs focused on reducing anxiety risk.

Effectiveness of two-dose vs. one-dose varicella vaccine in children in Shanghai, China: a prospective cohort study.

Varicella, a highly contagious viral disease caused by the varicella-zoster virus (VZV), affects millions globally, with a higher prevalence among children. After the initial infection, VZV lies dormant in sensory ganglia and has the potential to reactivate much later, causing herpes zoster (HZ). Vaccination is one of the most effective methods to prevent varicella, and the two-dose varicella vaccine (VarV) regimen is widely used around the world. In China, the VarV has been included in the national immunization programme with a recommended single-dose regimen. This study aimed to compare the effectiveness of the two-dose vs. one-dose VarV regimen in children in Shanghai, China. A prospective cohort study was conducted in Shanghai, China, from September 2018 to December 2022. The study enrolled children aged 3-18 years who had received either the one-dose, two-dose, or 0-dose VarV regimen. Vaccination history, varicella infection status, and relevant variables, including demographic information (name, date of birth and sex) and medical history (clinical features of varicella and illness duration) were collected through medical record review and parental interviews. A total of 3,838 children were included in the study, with 407 in the 0-dose regimen group, 2,107 in the one-dose regimen group and 1,324 in the two-dose regimen group. The corresponding incidence density in these groups was 0.13, 0.05 and 0.03 cases per 1,000 person-days, respectively. The adjusted vaccine effectiveness (VE) was 81.7% (95%CI: 59.3-91.8%) for the two-dose regimen and 60.3% (95%CI: 29.3-77.7%) for the one-dose regimen, compared to the 0-dose regimen. The two-dose VarV regimen showed a protective effectiveness of 47.6% (95%CI: 2.5-71.9%) compared to the one-dose VarV regimen. This study provides evidence supporting the greater effectiveness of the two-dose VarV regimen in preventing varicella infection compared to the one-dose regimen.

Constraints, Contradictions and Challenges regarding Cooperation of Parents during COVID-19: A Social Capital Perspective

Abstract Introduction: When calamity hits humanity in the form of natural disasters, they appear unannounced. The same applies to the recent destructive and disruptive Covid-19 pandemic. During the early days of this pandemic, life activities were halted abruptly. Global education systems were not spared - most institutions were caught napping and forced to close. The educational development of children was adversely affected by the hard lockdown and stringent restrictions that followed the outbreak of the pandemic. The role that parents had to play in the education of their children needed to evolve to meet the new demands. Methods: The researchers approached this study from a qualitative interpretivist philosophical stance to interview principals, teachers, and parents. In addition, this paper was located within Coleman’s social capital theory. Results: Amongst the key findings that emerged from the study were serious challenges regarding parents’ cooperation during the Covid-19 pandemic, namely, communication challenges between the school and home, increased learner absenteeism, and failure by learners to do schoolwork. Finally, the study also found that some parents were disinterested and disengaged from the schools. This study is significant because it provides epistemological insights and understanding of the challenges schools experienced during the Covid-19 pandemic. Discussion: Without exception, all participants felt strongly that the involvement of parents in a child’s education during a pandemic such as Covid-19 is significant. According to Durisic and Bunijevac (2017), the more actively parents are involved in their children's learning, the more benefits are achieved. In contrast, there often seems to be little to no collaboration between the school and the home in ensuring that their common goal of seeing the child succeed is achieved. This is in harmony with the findings of Porumbu and Necsoi (2013) who intimate that, sometimes, parents may feel like they are doing everything to help their children, but due to lack of communication between the parents and the school, the school may feel as though involvement is lacking. Limitations: The study was limited to only three schools and only nine participants were subjected to semi-structured interviews. Conclusions: The study provided epistemological insights regarding the cooperation and involvement of parents during the trying circumstances of the Covid-19 pandemic. This study provided the findings which are critical for theory, practice and policy to the education systems regarding future disasters.

Nurture clinic: Promoting mental health of children and adolescents.

Nurses play an important role in multidisciplinary teams while treating children and adolescents with mental health issues. Nurses should recognize and capitalize on the client's and family's strengths as they develop interventions, provide education, and refer to resources as appropriate. It is a mixed-method research, with an initial qualitative phase of obtaining data by in-depth interviews of parents on caring for children and adolescents with mental illness followed by quantitative assessment of the level of care dependency and implementation of need-based nursing interventions to the children and adolescents with mental illness. A total of 235 boys and 123 girls received the interventions. The majority of them (51.4%) were boys aged between 6 and 12 years and the highest diagnosis was attention deficit and hyperactivity disorder (ADHD) (34%). The need-based interventions required were nutrition (90%), prevention of injury and infection (83%), and positive and productive engagement (80%). Other interventions included self-care, physical activity, and medication. Need-based nursing interventions help in promoting the mental health of children and adolescents. This approach may be extended to primary care facilities and community mental healthcare by nurses.

No COVID-19 pandemic impact on incidence and clinical presentation of celiac disease in Italian children.

We aimed to evaluate the impact of Coronavirus Disease-19 (COVID-19) pandemic on the incidence and clinical presentation of celiac disease (CD) in children. The diagnoses of CD were compared between the COVID-19 pandemic (from April 2020 to March 2022) and the pre-pandemic period (from April 2018 to March 2020) in three Italian Paediatric Gastroenterology centres (Varese, Como, Catanzaro). Electronic patient records were reviewed and additional information were collected through parental interview. The diagnosis of CD was made according to ESPGHAN criteria. SARS-CoV-2 infection was diagnosed based on pre-vaccination positive serum antibodies or nasopharyngeal swabs. Z test and chi-square were used for statistical analysis. The overall number of paediatric diagnosis of CD did not differ between the two years pre-pandemic and pandemic periods (177 and 172 cases) in the three Italian participating centres. Clinical presentation of CD was also similar throughout the study periods. SARS-CoV-2 infection has been documented in 10.6% of children but only in 5.8% of these occurred before CD diagnosis. Different to what reported for other autoimmune diseases, the incidence and presenting symptoms of CD in our paediatric population did not change during the COVID-19 pandemic compared to the previous 2 years.

A Teacher and Parent Consultation Approach to Teaching Toilet training in Early Childhood Children with Special Needs

Children with special needs at an early age are children who experience developmental delays. One of the developmental tasks of early childhood is toilet training. Factors that support the success of toilet training are student readiness, cooperation between teachers and parents. Therefore, a consultation approach between parents and teachers is one way that can bridge to equalize perceptions between parents and teachers so that the toilet training program can run at home and school. The purpose of this study is to describe the process of consulting parents and teachers in shaping toilet training in early childhood with special needs. This research uses a qualitative method with a case study approach. Data collection was taken from interviews with parents, class teachers and principals as well as student observations. Data analysis includes steps: data reduction, data presentation, and conclusion drawing. The results showed that the consultation approach to teachers and parents was successful in helping children's toilet training programs both at home and at school.

Attention Deficit Hyperactivity Disorder and dopamine D4 receptor (DRD4) polymorphisms in South Indian population

Objectives Four decades of research have found that Dopamine D4 Receptor (DRD4) is the major candidate gene however, few studies have supported the association between the DRD4 exon III long seven repeat allele and Attention Deficit Hyperactive Disorder (ADHD). Two Indian studies had shown there is an association between DRD4 7 repeat allele; hence, we investigated in the south Indian population. AIMS: To study the association of DRD4-EXON-3-7R long allele and minor physical anomalies with ADHD in comparison to age &amp; sex-controlled normal subjects with no evidence of ADHD. settings and design-cross-sectional case-control study for two years at National Institute of Mental Health And NeuroSciences, Bangalore. Material and Methods 60 children with ADHD and 60 healthy children of 4-16 years of age group were recruited after informed consent. Assessed by DSMIV-TR, ADHD RS IV HOME VERSION 18 items, comorbidities by detailed interview of child and parents using Mini-International Neuropsychiatric Interview for Children &amp; Adolescents (M.I.N.I). Kid for minor congenital anomalies modified waldrop scale &amp; for the perinatal complications, Lewis Murray Obstetrics Complication Scales were applied. For the family history family interview for genetic study, global functioning was measured by children global assessment scale, neuropsychological tests of response inhibition test were used and blood samples was collected for genotyping. Results The genotype 2 2,2 4 ,4 4,4 5,4 7 repeat allele has shown equal distribution between cases and controls with p-value 0.492 with no significance. Conclusion There is no association between DRD4 EXON-3-7R long allele gene polymorphism and ADHD in South Indian population. DRD4 7R could be having influence on minor physical anomalies in ADHD.

"Getting Autism": Educators, Parents, and Autistic Adults and Teens Reflect on the Importance of Teachers Who Understand.

To explore the perspectives of educators, parents, and individuals on the autism spectrum regarding the qualities of teachers best equipped to support autistic students. In qualitative interviews parents of autistic adults (n = 35) discussed experiences they and their child faced during the school years, as did young autistic adults (n = 12) and teens (n = 11). Nineteen educators were also interviewed regarding how autistic students and their teachers were faring in public schools as well as what qualities and skills teachers needed to best support these students. A critical emergent theme was the importance of educators who possess a deep, intuitive understanding of autistic individuals. "Getting autism" involved autism knowledge, obtained through training or experience; an intuitive ability to read, respond to, and appreciate autistic students; and flexibility adapting to these students' needs. Autistic students, parents, and educators alike experienced a stigmatizing judgement and lack of support from unenlightened individuals in the schools. In contrast, there was great appreciation for those who "got autism" and were able to ease the way of autistic students, or support autism-friendly teachers, in whatever grade or situation. Research investigating how to cultivate, support, and reward autism-affirming teachers is needed. This will likely involve both didactic and experiential autism-focused training as well as recognition of the importance of high emotional intelligence and other qualities of teachers who "get autism." Future research should also explore the effects on these teachers and their students of larger systems, policies, and practices.

Early sleep intervention for improving infant sleep quality: a randomized controlled trial, preliminary result

BackgroundHealthy sleep issues should provide to family within first 6 months of infant’s life. This study aimed to evaluate the effect of early sleep intervention on nighttime sleep quality.MethodsEligible infants aged 4 months ± 2 weeks were randomized to receive early sleep intervention or usual care. Data on sleep variables were obtained via parental interview at baseline and 6 months of age. Using logistic regression to analyze the efficacy of early sleep intervention.ResultsAt baseline, 335 eligible infants were enrolled and randomized. In total, 306 participants were final analyzed: early sleep intervention group (n = 148) and the usual care group (n = 158). The early sleep intervention group had a significantly longer nighttime sleep duration and a shorter night waking duration than the usual care group (585.20 ± 80.38 min vs. 496.14 ± 87.78 min, p < .001 and 61.01 ± 36.38 min vs. 89.72 ± 45.54 min, p < .001). At 6 months of age, the early sleep intervention group had a longer night sleep duration (≥ 4 h/time) than the usual care group (adjusted odds ratio: 2.39, 95% confidence interval: 1.34–4.28).ConclusionsEarly sleep intervention should be recommended to infants at 4 months of age as a part of well childcare to improve infant sleep quality.Trial RegistrationThai Clinical Trials Registry (thaiclinicaltrial.org). Retrospective registered TCTR20230117001 (17/01/2023).

Selling world-class education: British private schools, whiteness and the soft-sell technique

ABSTRACT Education-UK and British private schools more specifically are often framed as a global brand of ‘world-class’ quality. However, the increased competition within the international education market has meant British private schools cannot rest on their laurels but instead must continue to project their ‘world-classness’ in a way that does not diminish their brand image. Drawing on interviews of parents and key gatekeepers, this paper examines how British private schools in Nigeria (BPS-NIG) and British private boarding schools in the UK (BPBS-UK) evoked and projected their supposed world-classness through the strategic use of white symbolism and the expensive admission process. The paper contends that the latter are types of soft-sell marketing techniques utilised by BPS-NIG and BPBS-UK to sell British schools without imperilling their brand image. The paper concludes by drawing attention to the racial implication of framing whiteness and white British specifically as synonymous with high-quality, ‘world-class’ education.

HPV Multilevel Intervention Strategies Targeting Immunization in Community Settings (HPV MISTICS): Study protocol for a hybrid 1 stepped-wedge cluster randomized trial

BackgroundThis protocol paper describes the overall design for HPV MISTICS, a multilevel intervention to increase human papillomavirus (HPV) vaccination initiation and completion rates among adolescents aged 11–17. MethodsWe will conduct a hybrid type 1 implementation-effectiveness trial using a stepped-wedge cluster randomized trial in eight federally qualified health centers (FQHCs) in Florida. Intervention components target three levels: system, providers, and parents. Outcomes will be assessed using quantitative (e.g., vaccination data, survey data) and qualitative methods (e.g., staff and parent interviews). We expect to quantify changes in HPV vaccine series initiation and completion rates for adolescents ages 11–17 in the eight FQHCs. We have hypothesized a 20-percentage point increase in HPV vaccine series initiation and a 10-percentage point increase in series completion. We also anticipate being able to explore factors at the system, provider, and patient levels as potential covariates. Implementation outcomes, barriers, and facilitators identified in the study will help characterize the implementation process and inform potential future intervention scale-up. ResultsThe project is ongoing; effectiveness and implementation outcomes will be determined following project completion. ConclusionsFindings will provide evidence of an equity-informed research design and implementation procedures that could help improve HPV vaccination rates in similar health systems.Clinical trials identifier:NCT05677360 (date registered: 2022-12-22); https://clinicaltrials.gov/study/NCT05677360?lead=Moffitt%20Cancer%20Center%20&aggFilters=status:rec&page=2&rank=17

The Role of Parents in Developing the Speaking Skills of Children Aged 5-6 Years in Sei Belutu Village

In Sei Belutu Village, Sei Bamban District, Serdang Bedagai Regency, research was conducted to determine the influence of parents on the development of their children's speaking abilities. Descriptive qualitative research was used in this research. In this research, 7 parents and 7 children from Sei Belutu Village, Sei Bamban District, and Serdang Bedagai Regency were research subjects. Research findings come from parent interviews and child observation methodology. According to the findings above, children's speaking abilities are more advanced in the semantics section, and parents play a greater role in the modeling (for example) and teaching (teaching) sections to help children aged 5-6 years develop their speaking skills in Sei Belutu Village.

Blurring the binaries of home/school in Family Language Policy

The persistence of the COVID-19-induced lockdowns resulted in increased parent-child encounters as parents worked from home while children learnt through remote platforms. This blurred the binaries of home/school as parents assumed the role of teachers by participating in children’s schooling more formally. By focusing on the role of parents as teachers in heritage language tasks, this study discusses family language ideologies and how they are infused into the teaching and learning of Ndebele, a historically minoritised and marginalised language in Zimbabwe. Data is drawn from a linguistic ethnography of a Ndebele heritage language family residing in the city of Bulawayo. Data consists of audio-recorded Ndebele language lessons and parental interviews. By drawing on the concepts of Family Language Policy and Bourdieu’s notion of ‘legitimate language’, the study exposes how children’s heritage language tasks became important aspects of family’s language transactions, contestations and negotiations. Parents build on their temporary teacher authority to assert their agency in reinforcing a Ndebele identity by endeavouring to teach Ndebele to their children through a ‘Ndebele lens’. Children’s stances towards parents’ monolingual practices and ideologies reveal their resistant agency. Their appeals for explanations and translations of some Ndebele words and expressions into English reproduce school language practices and ideologies that project English as the legitimate language. Parents’ insistence on monolingual practices and children’s language negotiations also reproduces the tensions that exist between English and indigenous languages at school and in the community at large. The study concludes that despite these tensions, these heritage language tasks present opportunities for productive language concordant parent-child encounters that reinforce children’s linguistic identities.

Grandparents as custodians of Arabic as a heritage language in the United Kingdom

The phenomenon of three-generation households is typical in many homes across the world, though perhaps less so in North America and Western Europe. When multigeneration families share the same physical space and take part in the same activities, the dynamics of parenting, eating, how time is spent and allocated, and relationships differ from families in which only parents and their children live together. One of the main (relevant) differences is that in these multilingual families there is easy access to the learning of heritage languages and socialisation into and through them. As the article will demonstrate shortly, such ease is also accompanied by relational and relationship challenges which bear on the heritage language learning process. The article describes the language transmission efforts of three Arabic-speaking families in the United Kingdom to teach and use Arabic with their children at home. Data was collected in the form of audio-recorded interactions, family background forms and parental interviews. Interview data was analysed thematically, and interactional data was analysed from the perspective of interactional sociolinguistics. The data reveals that, in addition to parents, grandparents uniquely enhance not only the learning of Arabic but also the experience of learning it. Children have a direct opportunity to learn Arabic and its various, often rare, dialects with help from their monolingual grandparents. Relationship dynamics between parents, their own parents, their parents-in-law, and their own children appear to shape and be shaped by the explicit and implicit language beliefs and practices of family members. Grandparents seem to also contribute to children’s emotional socialisation and their future beliefs of Arabic as an authentic means by which to express emotion. This is the first study to highlight the role grandparents play in the FLP of Arabic as a heritage language.

Sleep help-seeking behavior of parents with children with insomnia—what counts!

Abstract Background Insomnia in children is common and causes many mental health problems. Nevertheless, only little is known about influencing factors for sleep help-seeking behavior of parents with children with insomnia. Objective The aim of this study was to evaluate the duration and severity of insomnia in children as well as to assess the influence of additional mental disorders on insomnia duration and severity. The influence of a child’s insomnia duration and severity on parental sleep help-seeking behavior was examined. Materials and methods Patients at three German outpatient sleep clinics were evaluated. A self-developed parental sleep interview according to the third edition of the International Classification of Sleep Disorders (ICSD-3) criteria was conducted for each child. Additionally, information about insomnia severity and duration, the number of sleep help-seeking efforts, and mental disorders were retrieved from the family registration form. Results A total of 175 children (4–11 years) with a mean insomnia duration of 54 months were included. Insomnia severity was high, with no differences between children with and without comorbid mental disorders. Most parents (88.6%) had made efforts to seek sleep-related help for their child’s insomnia before contacting one of our outpatient sleep clinics. Pediatricians are the most frequently consulted professionals for child sleep problems. Insomnia severity ratings significantly correlated with the number of times professional help had been sought, but not with the number of self-help efforts. Insomnia duration was not correlated with any of the help-seeking measures. Conclusion Insomnia severity, but not insomnia duration, is associated with help-seeking behavior in parents. In the current sample, most parents sought professional help from their pediatrician beside their own efforts to elicit change. In sum, there were no differences between children with and without comorbid mental disorders, neither in terms of insomnia duration nor for insomnia severity. It seems necessary to promote awareness of the consequences of insomnia in children and therefore support earlier parental help-seeking behavior.

Behavioral difficulties and associated factors among the ‘lost generation’ of Syrian children and adolescents

Childhood and adolescence, vital in shaping adult life and society, are profoundly impacted during conflicts like Syria’s devastating war. This study explores the prevalence of behavioral disorders in Syrian children and adolescents, examining the influence of war and family-related factors. This cross-sectional study was conducted on children aged 2–17 years at a children’s outpatient clinic in Damascus, Syria. We assessed parents’ quality of life, war and family-related factors, and behavioral difficulties through parental interviews using two questionnaires: the Arabic version of the Strengths & Difficulties Questionnaire (SDQ) and the brief Arabic version of the World Health Organization Quality of Life Questionnaire (WHOQOL-BREF). 74.67% of children aged 2–4 years and 61.29% of children aged 5–17 years were experiencing behavioral difficulties, with emotional difficulties being the most prevalent ones. Children exposed to kidnapping, family losses, lack of school enrollment, and those with parents having lower education, lower socioeconomic status, and poorer quality of life exhibited higher Total SDQ scores. The high prevalence of behavioral difficulties among children and adolescents in Syria is a major concern, with both direct and indirect war-related factors contributing to this issue.

Quality of life in a cohort of Kenyan children with cerebral palsy

AimThe objective of the study was to evaluate the quality of life in Kenyan children (age 4–18 years) with cerebral palsy (CP). MethodsA cross-sectional descriptive study was conducted. Children with CP were recruited from the pediatric clinics at the Aga Khan hospital Nairobi (AKUHN). Parent proxy-reports using CPQoL-child and CPQoL-adolescents were obtained. Clinical and demographic data were compiled from medical records and parent interviews. A Likert scale was utilized to determine QoL across several domains. ResultsOne hundred and fourteen child–parent dyads with CP were recruited. The median age of study participants was 8 years (IQR 3–13 years), with males being the majority (57.02 %). Parent proxy-reports using CPQoL-child scale were obtained for n = 93 and CPQoL-adolescents for n = 21 respondents. Parents in both groups reported low domain QoL scores pertaining to function, family health and rehabilitation service accessibility. InterpretationStigma, accessibility to services, therapies and schooling, particularly for children with severe functional limitations, remains a concern. Caregivers would benefit from awareness campaigns of available supports and from local community respite programs. Where national support systems exist, there are critical inefficiencies in service delivery to target population.

Discovering needs for palliative care in children with cancer in Indonesia.

Although most children with cancer die in low- and middle-income countries, palliative care receives limited attention in these settings. This study explores parents' perspectives on experiences and needs of children dying from cancer. Home visits were conducted to interview parents of children, who were treated for cancer at an Indonesian academic hospital and died between 2019 and 2020, using semi-structured questionnaires. Parents of 49 children (response rate 74%) were interviewed. While all children died in hospital, 37% of parents stated their child preferred to die at home. The most common symptoms during final illness were breathing difficulties (82%), pain (80%), and appetite loss (80%). Psychological symptoms received the least support from the medical team. No intervention was given to 46% of children with depression, 45% of children with anxiety, and 33% with sadness. Boys suffered more often from anxiety (68%) than girls (37%; p=.030). Parents (57%) were not always informed about their child's condition, and doctors gave confusing information (43%). The families' choice of treatment while dying was relieving pain or discomfort (39%) and extending life (33%), while for 29% it was unknown. However, many parents (51%) did not discuss these treatment wishes with doctors. Many children (45%) felt lonely wanting more interactions with school (71%), friends (63%), and family (57%). Relieving suffering of children with cancer requires regular physical, psychological, social, and spiritual needs assessment. Families should actively participate in deciding whether to extend life or relieve pain and discomfort. This can importantly improve the quality of life of children and families.