Diagnosis Of Children Research Articles

Health-related quality of life in parents of long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study - Parents.

Having a child with cancer can profoundly impact parents' health-related quality of life (HRQOL). However, there is a lack of knowledge about the long-term effects of childhood cancer on parents' well-being. The current study aimed to (1) describe the HRQOL of parents of long-term childhood cancer survivors (CCS) and compare it with that of parents from the general population in Switzerland, and (2) investigate sociodemographic and cancer-related determinants of lower HRQOL in parents of CCS. In this cross-sectional study, a total of 751 parents of CCS (mean time since diagnosis = 23.7 years, SD = 6.7 years) and 454 parents from the general population reported their HRQOL by completing the Short Form-36 (SF-36v2). Sociodemographic and cancer-related characteristics were also collected. Multilevel regression analyses showed that parents of CCS and parents from the general population had similar physical and mental HRQOL. When comparing mothers and fathers separately, there were no differences between the samples, except for higher HRQOL in the domain of physical functioning in mothers of CCS. Cancer-related characteristics were not associated with HRQOL in parents of CCS. Several sociodemographic characteristics such as being female, being from the French or Italian-speaking part of Switzerland, having a lower education, having a chronic condition, and having a migration background were associated with lower HRQOL. Parents of CCS are doing well a long time after their child's cancer diagnosis. Nevertheless, tailored support should be provided for at-risk demographic groups.

Parents' disclosure of their child's health and neurodevelopmental conditions: A systematic review and qualitative metasynthesis.

Parents of children with physical/mental health and/or neurodevelopmental conditions often need to make disclosure decisions for their child. Disclosure can bring benefits (e.g., support) but can also risk harm (e.g., stigma). This systematic review aimed to consolidate research regarding parents' disclosure experiences to better understand how to support parents during this process. We focused on two research questions: (1) What factors contribute to parents' decision to disclose or conceal their child's health or neurodevelopmental condition? (2) If they choose to do so, how, when, and to whom do parents typically disclose? Twenty studies of medium to good quality were identified through systematic electronic database searches since 1990. Data were analyzed using a descriptive-interpretative approach and presented as a qualitative metasynthesis. Factors contributing to parents' disclosure decisions included managing stigma, protecting privacy, advocating, and seeking social support. Parents considered disclosure based on existing relationships, adapted disclosure content to context, and planned how to disclose. Throughout all findings, the child's best interests were at the forefront of parents' decision making. Factors affecting parents' disclosure decisions were similar across different childhood conditions. Disclosure decisions are complex and challenging but become easier with experience after the child's diagnosis, indicating that parents need disclosure support relatively soon after diagnosis. (PsycInfo Database Record (c) 2025 APA, all rights reserved).

Bedouin fathers of children with developmental disabilities-Stress, stigma and collaboration with professionals.

Research has not fully elucidated the challenges experienced by the caregivers of children with developmental disabilities (DDs) in different sociocultural contexts. Studies on parents, especially fathers, of children with DDs in the Middle East are especially rare. Similarly, the subject of collaboration between Bedouin fathers and professionals has seen little research. This study fills these gaps by highlighting the experiences of Bedouin fathers raising children with DDs. This study answered the following questions: A) Do stigma and stress affect the collaboration between Bedouin fathers and professionals? B) Do relationships exist between stigma, stress and collaboration? Eighty-eight Bedouin fathers of children with DDs completed questionnaires on sociodemographic details, stigma, stress and collaboration between parents and professionals. Data were analysed using Pearson correlations, a correlation matrix and hierarchical linear regression. The findings revealed a significant positive relationship between stigma and stress, a significant negative relationship between stigma and collaboration and a significant negative relationship between stress and collaboration. Three demographic characteristics were associated with greater influence on fathers' collaboration with professionals: 1) comorbidity in s child's diagnosis, 2) age of DD diagnosis and 3) father's age. The findings emphasise the need to develop tailored intervention programmes to assist fathers in reducing their sense of stigma and stress and in increasing their competence in collaborating with professionals.

Parents' experiences on handling paediatric anticancer drugs at home after an educational intervention.

The shift of treatment of paediatric cancer patients to include more care at home puts a lot of pressure on health care professionals (HCPs) to prepare and train parents on safe and correct drug handling at home. Parents must take in and understand the information presented to them while coping with their own fear related to their child's cancer diagnosis. In Sweden, parents are expected to handle and manipulate oral anticancer drugs (OADs) in the home setting. There is however a lack of a standardized method to inform and educate parents on how to handle OADs in a correct way at home. To describe parents' experiences of handling OADs at home after participating in an educational intervention. Educational intervention in the present study aimed to improve parents' knowledge in key concepts that is, handling OADs at home by using information presented in different forms. Fifteen parents to 12 children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis. Parents' experiences are presented in categories: Relieved stress, Awareness of own exposure, Facilitated my everyday life, Parents need continued support individually. The educational intervention resulted in both positive and negative feelings, increased awareness of drug exposure and correct drug handling at home. Practical training and information presented in different ways facilitated the process of drug handling. To handle the drug correctly at home parents requested to be trained and informed in the beginning of their child's oral drug treatment. In addition, parents requested to be individually approached by HCP to get answers to questions and concerns. This educational intervention study shows promising results for the method used by HCPs to inform and educate parents on complicated topics such as handling OADs at home.

P-1186. Significant Reduction in Disease Burden and a Shift in Clinical Diagnoses in Children Hospitalized with Respiratory Syncytial Virus (RSV) after Nirsevimab Implementation in Catalonia (Spain)

Abstract Background RSV causes a significant burden including hospitalization in infants. Nirsevimab prophylaxis was implemented in October 2023 in Catalonia (Spain) for all children < 6-months-old to reduce RSV-associated morbidity. We aimed to define the impact of nirsevimab administration on clinical outcomes of hospitalized children with RSV infection. Methods We compared clinical data from RSV-associated hospitalizations in children < 16-years-old between October 2022 - March 2023 and October 2023 - March 2024. Respiratory samples were collected from 11 hospitals of the COPEDICAT network (https://www.copedicat.cat). Laboratory confirmation was performed by a real-time multiplex RT-PCR-based assay (Allplex Respiratory Panel Assay, Seegene, South Korea) or antigen test. Disease severity was defined by the pulmonary score and/or need for PICU care. Results We included 636 hospitalized patients (63.5% in 2022-23 and 36.5% in 2023-24), mostly with lower respiratory tract infections (97.6%). Median age in the 2022-23 season was 4.5 vs 11 months in the following season (p< 0.001). The proportion of children < 6-months-old was also significantly lower in 2023-24 (53.0% vs 31.5%, p< 0.001) (Figure 1). There was a 42.6% reduction in hospitalizations in 2023-24 compared with the previous season; most of the hospitalized children in the 2023-24 season had not been immunized with nirsevimab (72.5%). In 2023-24, there was a higher proportion of bronchitis (40.1% vs 27.2%, p< 0.001) and children treated with bronchodilators and corticosteroids (both p< 0.001) compared to the previous season. The number of PICU admissions decreased by half (60 vs 32), but its percentage in relation to total hospital admissions did not change significantly (14.9% vs 13.8%, p=0.58). No significant differences were found in the clinical score at admission or respiratory support. Conclusion After the introduction of nirsevimab in infants < 6-months-old, children admitted to catalan hospitals were older and the proportion of bronchitis was significantly higher than in the previous season. In addition, there was a reduction of almost 50% RSV-associated hospitalizations and PICU admissions compared to the previous season; most of the hospitalized children had not been immunized with nirsevimab. Disclosures Asuncion Mejias, MD, PhD, MsCS, Astra-Zeneca: Advisor/Consultant|Astra-Zeneca: Honoraria|Enanta: Advisor/Consultant|Janssen: Advisor/Consultant|Janssen: Grant/Research Support|Merck: Advisor/Consultant|Merck: Grant/Research Support|Moderna: Advisor/Consultant|Pfizer: Advisor/Consultant|Pfizer: Honoraria|Sanofi-Pasteur: Advisor/Consultant|Sanofi-Pasteur: Honoraria

Parent’s Satisfaction Level without Antibiotic Prescription in Children with Clinical Diagnosis of Viral URTI

ABSTRACT Objective: Objective of this study is to assess parent satisfaction levels when healthcare providers do not prescribe antibiotics for children with clinical diagnoses of viral upper respiratory tract infection (URTI). Methodology: 200 children having ages between 6 months to 12 years, clinically diagnosed, as viral upper respiratory tract infections (based on clinical sign and symptoms) without respiratory distress signs were included. Structured questionnaire included items related to parent’s demographic information, their understanding of URTIs, their expectations regarding antibiotic prescriptions and their satisfaction levels with the healthcare provider's decision. A medical officer conducted face-to-face interviews of parents or guardian after their child's diagnosis and consultation with a Consultant Pediatrician, in a friendly atmosphere. Results: The average age of the children included in the study was 5.12 ± 2.93 years. There were 124 males (62.0%) and 76 females (38.0%). 18 participants (9.0%) reported being highly unsatisfied with the healthcare provider's decision not to prescribe antibiotics for their children's viral URTI. 152 (76.0%), expressed being unsatisfied, while 30 participants (15.0%) were satisfied. The majority of participants, 192 (96.0%), believed that antibiotics could help in the treatment of viral URTIs. Only a small percentage, 8 (4.0%), held the correct belief that antibiotics do not help in viral URTI. Conclusion: Majority of parents expressed dissatisfaction with the healthcare provider's decision not to prescribe antibiotics for their children's viral URTIs. Key words: Viral Upper respiratory tract infection, Antibiotics, Parental satisfaction

Associations of mental disorders in children with parents' subsequent mental disorders: nationwide cohort study from Finland and Denmark.

Intergenerational transmission of mental disorders has been well established, but it is unclear whether exposure to a child's mental disorder increases parents' subsequent risk of mental disorders. We examined the association of mental disorders in children with their parents' subsequent mental disorders. In this population-based cohort study, we included all individuals with children born in Finland or Denmark in 1990-2010. Information about mental disorders was acquired from national registers. The follow-up period began when the parent's eldest child was 5 years old (for ICD-10 codes F10-F60) or 1 year old (for codes F70-F98) and ended on 31 December 2019 or when the parent received a mental disorder diagnosis, died, or emigrated from Finland or Denmark. The associations of mental disorders in children with their parents' subsequent mental disorders were examined using Cox proportional hazards models. The study cohort included 1 651 723 parents. In total, 248 328 women and 250 763 men had at least one child who had been diagnosed with a mental disorder. The risk of a parent receiving a mental disorder diagnosis was higher among those who had a child with a mental disorder compared with those who did not. For both parents, the hazard ratios were greatest in the first 6 months after the child's diagnosis (hazard ratio 2.04-2.54), followed by a subtle decline in the risk (after 2 years, the hazard ratio was 1.33-1.77). Mental disorders in children are associated with a greater risk of subsequent mental disorders among their parents. Additional support is needed for parents whose children have been recently diagnosed with a mental disorder.

Understanding the Impact of YouTube Videos on Parents of Children with Developmental Delay and Disabilities

Children go through several developmental milestones at an early age. When a child becomes slow or cannot even reach one or more of these milestones compared to other typically developing children, that condition is called Developmental Delays and Disabilities (DDDs). Children's DDDs create much parental stress, resulting in social isolation and loneliness. YouTubers make videos on DDDs to assist parents and other caregivers. We need to gain more knowledge of how these videos are created and how much they impact the parents of children with DDDs. We followed a mixed-method approach to annotate and analyze 1,532 YouTube videos on children's DDDs. Our analysis found that YouTube videos on DDDs support the community with critical informational content and provide mental and emotional strength through content related to personal experiences. Our analysis of the comments in these videos explored how YouTubers and viewers created a strong community connection through these video content. Most importantly, the interviews with the parents of children with DDDs revealed how parents find these videos relatable and critical for taking necessary actions for their children's DDDs diagnosis and follow-up treatments. We concluded by discussing platform-centric design implications for supporting parents and other caregivers of children with DDDs.

Styles of Delivering News About a Child's Cancer and Parents' PTSD Symptoms.

Receiving a child's cancer diagnosis is a highly traumatic experience for parents, often leading to significant psychological distress, including symptoms of Post-Traumatic Stress Disorder (PTSD). The way healthcare professionals deliver this news can affect the severity of parents' reactions. While some research examines communication style's impact on patients, few studies focus on its effects on parents. This study explores the relationship between the communication style used by oncologists when delivering a child's cancer diagnosis and the subsequent levels of PTSD symptoms, mental resilience, and self-efficacy in parents. One hundred twenty eight parents of children diagnosed with cancer participated. Data were collected using the Styles of Communicating Questionnaire (SCQ), PTSD Checklist for DSM-V (PCL-5), the Connor-Davidson Resilience Scale (CD-RISK), and the General Self-Efficacy Scale. Correlations and hierarchical multiple regressions were performed to examine the relationship between communication style and psychological outcomes. Parents who perceived the oncologist's communication style as more activating (clear, structured, and action-oriented) reported significantly lower levels of PTSD symptoms and higher levels of resilience and self-efficacy. The perception of empathy played a crucial role, particularly when physicians balanced emotional and cognitive empathy. This balance was linked to better psychological outcomes in parents. The study highlights the critical role of communication style in mitigating the psychological impact of a child's cancer diagnosis on parents. Training healthcare providers to balance cognitive and emotional empathy in communication may reduce PTSD symptoms and enhance resilience and self-efficacy in parents, ultimately improving their psychological well-being during such a challenging time.

Telehealth Occupation-Based Coaching for Rural Parents of Children With Type 1 Diabetes: A Randomized Controlled Trial.

Because of the complexity of their child's diabetes management, parents often assume all care duties and report needing additional assistance to resume family routines. To examine the preliminary efficacy of a telehealth occupation-based coaching intervention for rural parents of a child living with Type 1 diabetes (T1D) to improve child glycemic levels, family quality of life, and parental self-efficacy. Double-blinded, two-arm, pilot randomized controlled trial. Telehealth video conferencing at home. 16 dyads of rural parents and children ages 2 to 12 yr diagnosed with T1D. Occupation-based coaching delivered through telehealth sessions, once weekly for 12 wk, informed by community partners. Child measures: hemoglobin A1c and glucose time in range. Family measures: Parenting Sense of Competence, World Health Organization Quality of Life Brief Questionnaire, Goal Attainment Scale, Evidence of Independent Capacity Rating Scale (EICRS), and caregiver talk. Families in the intervention group were more likely to achieve family-centered participation goals (p = .006) than those in the controlled group. Caregiver talk increased significantly over the 12-wk period (p = .034), and the average rating on the EICRS also improved significantly (p < .001). There were no statistically significant changes in glycemic levels or family quality of life. OBC may be more efficacious in helping families to improve health management routines after a child's diagnosis with T1D than usual endocrinology care alone. Most child health outcomes were in target range at the start of the study; therefore, it was not expected to see significant improvements. Plain-Language Summary: Occupational therapy is an untapped resource in the provision of care for children with Type 1 diabetes (T1D). Occupational therapy practitioners can also provide families with evidence-based support to address the self-management skills of children with this chronic condition. This clinical trial examined the preliminary efficacy of a new 12-wk telehealth occupational therapy intervention for rural families with a child living with T1D to improve caregiver diabetes management skills, family participation, and child health. Families who received occupational therapy services were more likely to improve their family participation in meaningful activities and diabetes self-efficacy; however, there were no differences in the child's health outcomes or the family's quality of life.

Missed Opportunity for Initial Diagnosis in Children With Complex Appendicitis.

Delayed diagnosis of acute appendicitis in children may result in complex appendicitis with appendiceal perforation. Delayed diagnosis can result from missed opportunity for initial diagnosis (MOID) despite medical attention. Studies report MOID of less than 5% in pediatric emergency departments (EDs), but we hypothesized that many MOID occurs outside tertiary care facilities. Our goals were to determine the MOID rate in all presenting facilities in children with complex appendicitis and to identify associated risk factors. Children (age ≤18) undergoing appendectomy for complex appendicitis between 2018 and 2022 at a single free-standing academic children's hospital were reviewed. Missed opportunity for initial diagnosis was defined as evaluation for related symptoms without a diagnosis of appendicitis within 7 days prior to appendectomy. Logistic regression and UpSet plots were used to identify associated risk factors. Of 856 children, 140 (16.4%) had MOID. Most MOID originated from nontertiary facilities [urgent care (38.6%), local EDs (26.4%), primary care (25.0%)] compared to our pediatric ED (11.4%). Compared to single-encounter diagnosis, MOID was associated with younger age (adjusted odds ratio per year [aOR] 0.93, 95% confidence interval [CI]: 0.88-0.97) and non-English/Spanish primary language (aOR 2.61, 95% CI: 1.18-5.76). Uninsured patients had lower MOID (aOR 0.22, 95% CI: 0.05-0.96). Missed opportunity for initial diagnosis was associated with more complications (33.6% vs 19.1%, P < 0.0001), prolonged length of stay (6 vs 4 days, P < 0.0001), and increased readmission (11.4% vs 6.6%, P = 0.044). Missed opportunity for initial diagnosis of complex appendicitis occurs in nontertiary care facilities, is more common in younger children and non-English/Spanish speakers, and is associated with worse outcomes, highlighting the need for interpreters and algorithmic evaluation in nontertiary care facilities.

Vascular Ehlers-Danlos syndrome in children: evaluating the importance of diagnosis and follow-up during childhood.

Vascular Ehlers-Danlos syndrome (vEDS) is a rare inherited connective tissue disorder predominantly caused by pathogenic COL3A1 variants. Characteristic arterial and intestinal fragility and generalised severe tissue friability can lead to clinical events from childhood. We highlight a paucity of literature regarding children diagnosed with vEDS, possibly explained by a restraint in predictive testing, and present data on 63 individuals (23 index cases) with a clinical and genetic diagnosis of vEDS in childhood (<18 years) to address this. Patients were identified through the National Ehlers-Danlos Syndrome (EDS) Service London. We report on 18 events in childhood, recorded in 13 individuals. First events occurred at a median age of 11 years (IQR 0-13) and genetic testing was initiated as a direct result of the first event in 11/13 cases. In the cohort majority, diagnosis was the result of familial genetic testing (55%). Our findings emphasise the importance of offering genetic testing in childhood when there is a positive family history of vEDS and/or features suggestive of a potential inherited connective tissue disorder. Diagnosis in childhood allows for follow-up surveillance and informed multi-disciplinary management, in addition to genetic counselling and patient-led management including lifestyle modification. As seen in adult cohorts, we anticipate children with vEDS will experience the same protective benefit afforded by early diagnosis and present preliminary data on follow-up in childhood. Formal evaluation of the impact that diagnosis of vEDS in childhood has on disease management is needed when sufficient data is internationally available.

"When I gave him the insulin injection, I felt the pain in my heart": Experiences of parents of young children with type 1 diabetes in an Arab country.

Type 1 diabetes mellitus in children is one of the most common chronic health conditions, requiring constant monitoring and care. Living with children who are diagnosed with chronic illness affects multiple aspects of parents' daily lives, including the physical, mental, and social aspects. Due to their child's diabetes, parents may experience many special difficulties with their daily responsibilities. This study describes parental experiences caring for a child with type 1 diabetes. The study was based on semi-structured interviews with 10 parents caring for a child with type 1 diabetes. We analyzed the interviews using Colaizzi's strategy of descriptive phenomenological data analysis in nursing research. Participants were described a profoundly challenging situation, and they were in need of support to help them handle a challenging life situation, especially during the first years of a child's diagnosis. The following themes emerged from the data: adapting to the new reality after diagnosis, keeping up with the child's treatment regimen, psychological, social, and financial burdens, and staying tuned for complications.

Regional Deprivation and Diabetic Ketoacidosis at Type 1 Diabetes Diagnosis in Children and Adolescents: International Comparison among 6 Countries

Introduction: The incidence of diabetic ketoacidosis (DKA) at the time of diagnosis of type 1 diabetes in youth varies between countries and is influenced by socioeconomic factors. We investigated the relationship between regional deprivation indices and DKA at the diagnosis of type 1 diabetes in six countries. Methods: We analyzed children 0.5–17.0 years old diagnosed with type 1 diabetes between 2019 and 2022 across six diabetes registries. Regional deprivation index within each country was standardized to compare each individual’s socioeconomic status internationally. Log-binomial regression models assessed the association between the standardized deprivation index and DKA, with sex, age group, and year as covariates. Results: Among 21,020 children (mean age 9.08 [SD 4.19] years), the DKA rate of 36.5%. Cohorts were Germany (n = 13,561, DKA 32.5%), Italy (4,659, 42.5%), Colorado, USA (1,318, 54.9%), Wales (769, 35.2%), New Zealand (407, 43.7%), and Slovenia (306, 37.6%). Deprivation was associated with the increased risk of DKA in children 0.5–<6 (OR 1.16 [95% CI: 1.10–1.23], p < 0.0001) and 6–<12 years of age (1.05 [1.05–1.11], p = 0.02). Female sex increased risk of DKA (1.06 [1.00–1.13], p = 0.04). The proportion of DKA was lower in 2019 than in 2020, 2021, and 2022 (each p < 0.0001). Conclusion: Deprivation was significantly associated with the risk of DKA at the diagnosis of type 1 diabetes, and DKA was more common during the pandemic years 2020–2022 than in 2019. Younger children appear to be more vulnerable to deprivation than older patients. Understanding and reducing local and demographic-specific disparities are essential for effective intervention.

‘You grow with the allergy’: a grounded theory study of families’ experiences with food allergy risk or diagnosis in early childhood

ObjectiveChildhood food allergy is increasing in western societies. Preventing and managing food allergies is therefore essential for both parents and children. Given the limited previous research on parents’ experiences of...

Maternal and paternal risk factors associated with diagnoses within the continuum of fetal alcohol spectrum disorders in the USA: Proximal and distal influences.

We sought to determine risk factors for fetal alcohol spectrum disorders (FASD) in the United States. Mothers of first-grade children participating in the Collaboration on FASD Prevalence (CoFASP) in three regional sites were interviewed. Maternal and paternal data were reported by mothers of children with an FASD diagnosis and controls. Interviews were conducted with mothers of children with an FASD (n = 114) and controls (n = 753). Fifty-seven percent of control mothers usually drank 2.7 drinks per drinking day (DDD) once per month prior to pregnancy, and 79% of mothers of children with FASD reported drinking 4.2 drinks 1-2 times per week. Mothers of children with alcohol-related neurodevelopmental disorder reported the most alcohol consumption overall: bingeing, drinking frequency, drinking in each trimester, and other drug use. Mothers of children with fetal alcohol syndrome (FAS) and partial FAS (PFAS) underreported consumption. Distal maternal risk factors were liver problems, depression, later pregnancy recognition and first prenatal visit, lower frequency of marriage, and lower spirituality. Postnatal risk indicators were low birthweight and gestational age. Regression analysis indicated that maternal reports of three DDD before pregnancy were associated with a diagnosis within the FASD continuum (p < 0.001, OR = 9.92). First-trimester exposure (p < 0.001, OR = 7.64) and all three trimesters (p < 0.001, OR = 7.77) were associated with a child's FASD diagnosis. An independent association was found between paternal DDD during pregnancy and FASD diagnoses (p = 0.002, OR = 1.08); but, once maternal drinking was a covariate, paternal influence was not significant. Stepwise models indicated that combined maternal alcohol use measures (p < 0.001, χ2 = 61.09), later pregnancy recognition (p = 0.032, χ2 = 4.58), later prenatal visits (p = 0.036, χ2 = 4.38), and depression in lifetime (p = 0.002, χ2 = 9.47) were significant FASD predictors. The final 10-step model explained 27.4% of the variance in FASD risk. While multiple, significant maternal risk factors for FASD were identified, paternal drinking was not a statistically significant, independent risk factor.

"It's his cheerfulness that gives me hope": A qualitative analysis of access to pediatric cancer care in Northern Tanzania.

Pediatric cancer is a significant and growing burden in low- and middle-income countries. The objective of this project was to describe the factors influencing access to pediatric cancer care in Northern Tanzania using the Three Delays Model. This was a cross-sectional qualitative study conducted between June and August 2023 at Kilimanjaro Christian Medical Centre (KCMC). Using purposive sampling methods, caregivers of children obtaining pediatric cancer care at KCMC were approached for participation in in-depth interviews (IDIs) and a demographic survey. All IDIs were facilitated in Swahili by a bilingual research coordinator. Analysis utilized inductive and deductive coding approaches to identify dominant themes and sub-themes impacting access to pediatric oncology care. Data collection concluded once saturation was achieved at 13 IDIs, defined as the absence of new codes after three consecutive interviews. Participants reported significant financial barriers to accessing pediatric cancer care along the entire care continuum. In the first delay, themes included waiting for symptoms to resolve and the identification of initial symptoms. The most substantial delays occurred in delay 2, including health infrastructure at mid-level facilities, misdiagnoses, the referral system, travel, and traditional medicine. Participants did not describe delays after arrival to KCMC and rather offered perspective on their child's cancer diagnosis, their concerns while obtaining care, and their hopes for the future. Financial support provided by the Tanzanian government was the only facilitator noted by participants. We suggest targeted interventions including 1) empowerment of CHWs and local traditional healers to advocate for earlier care seeking behavior, 2) implementation of clinical structures and training at intermediary medical centers aimed at earlier referral to a treatment facility, 3) incorporation of support and education initiatives for families of children with a cancer diagnosis. Lastly, national health plans should include pediatric cancer care.

Parental attitudes and experiences in pursuing genetic testing for their child's motor speech disorder.

Rare and typically severe motor speech disorders such as childhood apraxia of speech (CAS) and dysarthria affect about 1 in 1000 children. The genetic basis of these speech disorders is well-documented, with approximately 30% of children who undergo genomic testing receiving an explanatory genetic diagnosis. As more children with speech disorders are offered genetic testing, understanding parental views and experiences around genetic testing for their child is critical in providing effective pre- and post-test genetic counselling. This research explored parental attitudes, experiences, and perceived implications of pursuing genetic testing for their child with motor speech disorder. Semi-structured interviews were conducted with 20 parents of children with CAS or dysarthria who had undergone exome sequencing. Eight parents had received a genetic diagnosis for their child and 12 received uninformative genetic test results. Interviews were transcribed verbatim, co-coded, and analysed using reflexive thematic analysis. Parents were highly motivated to pursue genetic testing for their child's speech disorder due to the perceived personal, clinical, social, and financial utility in obtaining a genetic diagnosis. Regardless of testing outcome, parents experienced complex emotional responses in receiving their child's genetic test results. Parents whose child received a genetic diagnosis reported improved access to funding and clinical care; however, they also hoped for ongoing informational, clinical, and peer support in navigating the uncertainty surrounding their child's rare diagnosis. Conversely, parents who received uninformative genetic test results reported finding meaning in this test outcome, and used emotional-focused and problem-focused strategies to cope with their child's continued diagnostic odyssey.

Perceptions and Barriers to Accessing Myopia Management in the UK.

Perceptions and barriers to myopia management (MM) in childhood have not been fully explored within some countries, including the UK, where there is minimal public health education on myopia. The aim of this mixed-methods study was to explore perceptions of myopia and MM interventions using focus groups and a survey to obtain qualitative and quantitative data. Topics included the understanding of myopia, perceptions of MM, considerations when initiating MM, lifestyle risk factors, and barriers to uptake of intervention. Parent awareness and understanding of myopia and MM is limited. Many parents felt that they had not been provided with sufficient explicit advice about their child's diagnosis or treatment. Despite this, parents were aware of some of the protective lifestyle behaviours which may slow myopia progression. The common belief was that myopia can affect a child's quality of life. The most common reason that MM had been recommended to parents by practitioners was to reduce disease risk. The cost and lack of public awareness that MM interventions are available were the main barriers to the uptake of MM. There is a need to improve practitioner communication of myopia and its management and, subsequently, improve the standard of children's eyecare.

The linguistic construal of extreme behaviour

Abstract Teaching and family communities usually have an active role in Attention Deficit Hyperactivity-Impulsivity Disorder (ADHD) diagnosis in childhood. Examining the construal of hyperactivity-impulsivity in teaching guidelines and online parental exchanges can elucidate common lay understandings of the trait. The study considers transitivity, with a focus on Relational and Behavioural clauses, lexical metaphors and appraisals. The linguistic descriptions have a potential to assist medical specialists in interpreting evidence presented by teaching and family communities in the complex task of diagnosing ADHD, facilitating communication and explaining the strategies used to avoid potentially stigmatising descriptions. The analysis supports the suitability of distinguishing Behavioural processes in transitivity and traces a parallelism between the metaphorical descriptions of extreme behaviour and those traditionally reported for strong emotions.