Poor sleep quality in children with atopic dermatitis and its effects on behavior: A multicenter cross-sectional study from a low-middle-income country.

BACKGROUND: Sleep disturbance in children with atopic dermatitis (AD) frequently goes unnoticed and can be associated with behavioral challenges. The aims of this study were to determine (a) the prevalence and factors associated with sleep disturbance and behavioral problems and (b) the correlation between sleep disturbance and behavioral problems in children with AD. METHODS: This cross-sectional study involved children aged 4-12 years old with moderate to severe AD. Age and sex-matched healthy children were recruited as the comparison group. The Children's Sleep Habits Questionnaire (CSHQ) and the Strengths and Difficulties Questionnaire (SDQ) were used to assess sleep disturbance and behavioral problems, respectively. Higher scores in both questionnaires signify more disturbance. RESULTS: Seventy patients and 141 controls were recruited. Median (interquartile range) age of patients was 5 (4,8) years. Patients had later sleep time (p < 0.001), longer night awakening (p < 0.001), and shorter sleep duration (p < 0.001) compared to controls. CSHQ total scores and all its domains, except for sleep-disordered breathing were significantly higher in patients compared to controls. Patients also had significantly higher SDQ total difficulties scores in all domains, except for peer problems. Severity of AD was significantly associated with high CSHQ and SDQ scores. There was a moderate positive correlation between the total CSHQ score and total SDQ score in patients (r = 0.532). CONCLUSIONS: Children with moderate-to-severe AD had significantly more sleep disturbance and more behavioral problems than their healthy peers. Sleep disturbance had a positive correlation with behavioral problems. Severity of AD was associated with sleep disturbance and behavioral problems.

The Japanese Sleep Questionnaire for preschoolers within a Malaysian context.

BACKGROUND: Childhood sleep practices impact growth, development, and long-term health. There is a paucity of sleep data pertaining to preschool children in Asia, especially South-East Asia. METHODS: This cross-sectional study involved parents of well siblings, aged 2-6 years. It aimed to: (i) test the reliability of the English version of the Japanese Sleep Questionnaire for Preschoolers (JSQ-P), and (ii) obtain the prevalence, as well as describe, sleep-related issues. Ninety-one (91) parents (74.7%; mothers) self-administered the questionnaire in the pediatric clinic waiting area of a Malaysian tertiary hospital. Recruitment was from August to November 2020. RESULTS: The English version of the JSQ-P has good internal consistency (Cronbach alpha = 0.85). Range of Cronbach alpha values for each item: 0.36-0.87. Many (77%) children slept at 10:00 p.m. or later, similar to parents' late bedtimes. One-third had difficulty waking up in the morning. There were significant strong positive correlations between some features of restless leg syndrome, daytime tiredness, morning symptoms, and obstructive sleep apnea symptoms. Co-sleeping was prevalent (97.9%). Mean screen time for those who had set time limits was 2.35 ± 1.68 h. CONCLUSIONS: The English-language translation of the JSQ-P is a questionnaire with good internal consistency that can be used in non-Japanese speaking countries. Parents need to be educated on healthy sleep and screen time practices to optimize children's sleep quality and quantity.

Parents' Experiences of Affiliate Stigma when Caring for a Child with Autism Spectrum Disorder (ASD): A Meta-Synthesis of Qualitative Studies.

PROBLEM: Stigma affects not only children diagnosed with autism spectrum disorder (ASD) themselves, but also people connected with them (i.e., parents, siblings). The capacity of parents to provide care is affected by the stigma they perceive. This meta-synthesis encompasses the experiences of affiliate stigma among parents of children with ASD. ELIGIBILITY CRITERIA: Articles were limited to the English language, those reported on stigma experienced by parents of children with ASD aged 2-18 years, published between 1940 and 2019. SAMPLE: PubMed, CINAHL, PsycINFO, EMBASE, Scopus and The Cochrane Library databases were searched for eligible studies. Titles and abstracts were reviewed, and twelve articles fitted the selection criteria. The texts of the selected research papers were reviewed by two independent reviewers. RESULTS: Four common themes across parental experiences included felt stigma, enacted stigma, variations in stigma, and contributors to stigmatizing experiences. CONCLUSIONS: Highlighting the differences in parents' views on affiliate stigma is necessary to create awareness about ASD and the stigma linked with this disorder. IMPLICATIONS: The findings asserted that healthcare professionals, especially those in pediatric settings, and society need to have a greater awareness of the stigma and challenges that these parents encounter as this has implications on their mental and physical health. This awareness will lead to more compassionate health care delivery which will support them and create a better environment for families and children with ASD.

First Parental Concerns and Age at Diagnosis of Autism Spectrum Disorder: A Retrospective Review from Malaysia.

BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental disorder. This is the first study to examine first parental concerns in ASD in Malaysia. We examined: i) age and type of first parental concerns (AOC); ii) association between AOC and severity; iii) time lag between AOC and diagnosis; and iv) factors associated with diagnostic delay. METHODS: Medical records of 366 patients (aged 1-18 years) with ASD, at the Developmental Paediatrics Clinic of University of Malaya Medical Centre (UMMC), Kuala Lumpur, were reviewed for this 16-month retrospective cohort study. A validated coding system was used for initial parent concerns. Severity was classified via the Diagnostic and Statistical Manual of Mental Disorders-5th edition (DSM-5) criteria. Time lag between AOC and age at diagnosis (AOD) was calculated. Potential predictors of delayed diagnosis were extracted. RESULTS: Three-quarters (75.1%) of parents had concerns by 36 months. Speech/language/communication concerns were most frequent (60.1%). Number of first concerns was significantly correlated with severity (social communication/interaction, SCI [P = 0.019] and restricted, repetitive patterns of behaviours and/or interests/activities, RRB [P < 0.001]). AOC and AOD were significantly negatively correlated with SCI and RRB (P < 0.001). Medians; AOC: 24 months, AOD: 46 months and time lag: 17 months. Higher initial screen time was associated with diagnostic delay (P = 0.031). CONCLUSION: First parental concerns and AOD were comparable to studies across countries. Speech/communication delays may represent universal first parental recognition of ASD.

Parent-reported pain in non-verbal children and adolescents with cerebral palsy.

AIM: This cross-sectional study aimed to determine the prevalence, frequency, and intensity of parent-reported pain among non-verbal children with cerebral palsy (CP) and explore associations with medical, demographic, and parental psychosocial factors. METHOD: Participants were parents of non-verbal outpatients (aged 2-20y) with CP at University of Malaya Medical Centre, Kuala Lumpur and two community centres. Parents answered the Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire and a pro forma regarding parent-reported frequency and intensity of pain during the preceding 4 weeks. Parental psychosocial well-being was assessed via the Depression, Anxiety and Stress Scale and Multidimensional Scale of Perceived Social Support. RESULTS: The response rate was 94%; 104 children (54 males, 50 females) were studied. The majority (51%) were in Gross Motor Function Classification System level V and 65% had spastic quadriplegia. Parents reported pain in 65%, intense pain in 17%, and daily pain in 28%. Intense and frequent pain was reported during physiotherapy. More intense pain was reported in older children (p=0.016) and those with spastic quadriplegia (p=0.020). INTERPRETATION: Caregivers of non-verbal children with CP report a high frequency of pain. Pain intensity is associated with patient factors but not parental psychosocial factors.

Depressive symptoms in children with chronic gastrointestinal disorders.

BACKGROUND: Children with chronic illness may have depressive symptoms. The purpose of this study was to determine the prevalence of depressive symptoms among children attending a pediatric gastroenterology outpatient clinic in Malaysia, and whether it differed by age, gender and diagnosis. METHODS: This was a cross-sectional study, with data collected over a 16 month period (April 2010-July 2011). Patients aged 7-17 years on follow up at the pediatric gastroenterology clinic at University Malaya Medical Centre, Kuala Lumpur, were recruited consecutively. They were classified into high, average and low scores based on responses to questions in the Children's Depression Inventory (CDI; high, T-score >55; average, T-score 45-55; low, T-score <45). Children with high scores were considered to have depressive symptoms. RESULTS: The response rate was 93%. One hundred children (44 boys; 56 girls) were studied. Major diagnoses were: functional abdominal pain (n = 22), inflammatory bowel disease (n = 26), biliary atresia (n = 17) and miscellaneous gastrointestinal conditions (n = 35). The overall prevalence of high CDI for depressive symptoms was 27.0%, while 43.0% and 30.0% had average and low scores, respectively. There were no significant differences in the prevalence of high scores among children with different diagnoses. CONCLUSIONS: Depressive symptoms were common among children attending a pediatric gastroenterology clinic. It is important to recognize symptoms of depression in children with gastrointestinal disorders.

Abusive head trauma in infants: An observational single centre study comparing developmental and functional outcome between 18 months and 5 years.

BACKGROUND: Abusive head trauma (AHT) is a major cause of traumatic brain injury in infancy. This exploratory study compared standardized developmental assessment versus functional outcome assessment between 18 months and 5 years of age following AHT in infancy. METHODS: Observational cross-sectional study after surviving AHT in infancy. Seventeen children between 18 months and 5 years of age underwent clinical examination, developmental assessment using the Schedule of Growing Skills II (SGS II) and functional assessment using the Glasgow Outcome Scale-Extended Pediatric Revision (GOS-E Peds). Additional clinical information was extracted from medical records. RESULTS: Age at assessment ranged from 19 to 53 months (median 26 months). Most (n = 14) were delayed in at least 1 domain, even without neurological or visual impairment or visible cortical injury on neuroimaging, including 8 children with favourable GOS-E Peds scores. The most affected domain was hearing and language. Delay in the manipulative domain (n = 6) was associated with visual and/or neurological impairment and greater severity of delay across multiple domains. Eleven (64.7 %) had GOS-E Peds scores indicating good recovery, with positive correlation between GOS-Peds scores and number of domains delayed (r = 0.805, p < 0.05). CONCLUSION: The SGS-II detects behavioural and cognitive deficits not picked up by the GOS-E Peds. Combining both tools for assessment of AHT survivors under 5 years of age provides a comprehensive profile which addresses multiple domains of development and function, facilitating targeted intervention. Detection of developmental problems in the majority of survivors makes AHT prevention a public health priority.

An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD).

Purpose: Children diagnosed with ASD usually have impaired social functions, exhibit repetitive, stereotyped and self-stimulatory behaviors, which make them prone to be stigmatized by the public. However, stigma not only affects those with stigmatization characteristics such as children with ASD but also tends to include other people related to them including parents. This is called affiliate stigma. However, affiliate stigma is unlikely to occur if public awareness is high. Considering that awareness of ASD is still comparatively low in this region and that, as a review of the literature showed, there have been limited studies on stigma and ASD conducted in South-East Asia, particularly in Malaysia, this study is of great significance, especially in the context of the East and other developing countries. The aim of this study was to explore parents' experiences of caring and perceptions of affiliate stigma, resilience and quality of life (QoL) when caring for a child with ASD. Methods: This paper is part of the sequential explanatory mixed-methods study in which, after a cross-sectional study of 144 parents, a qualitative approach was used to explore parents' experiences of caring and their perceptions of affiliate stigma, resilience, and QoL. Participants were recruited when they were accompanying their children to therapy at two tertiary public hospitals in one of the north-eastern states of Malaysia. Eleven parents of children with ASD aged 2-12 years participated. Qualitative data analysis followed Braun and Clarke's methodology of thematic analysis. Results: Four themes were identified: the meaning of QoL, ASD and life adjustment, perceived stigma, and resilience. Conclusion: This is the first Southeast Asian study on parent-perceived affiliate stigma, resilience, and QoL in the context of ASD. These findings can inform healthcare personnel and policymakers into day-to-day parenting realities and therefore an effort to coordinate support services across all disciplines could be made to improve outcomes for both parents and children.

Relationship between children with neurodevelopmental disorders and their caregivers and friends during early phase of COVID-19 school closure in Japan: Association with difficulty in implementing infection prevention measures.

BACKGROUND: Due to the COVID-19 pandemic people had to implement various infection prevention measures. Researchers have reported the difficulties experienced by children with neurodevelopmental disorders in implementing these measures and their caregivers' resultant anxiety and stress. This study examined the relationship between these difficulties and the deterioration of the children's relationships with their caregivers and friends during school closure and after school reopened. METHODS: A total of 150 caregivers of children with neurodevelopmental disorders answered a questionnaire asking about parent‒child relationships, their child's friendships, and the presence or absence of difficulty in implementing infection prevention measures at three time points: before the pandemic, while schools were closed, and after school reopened. The frequency and percentages of the child's behavioral problems, deterioration in their relationships, and difficulty implementing infection control measures were calculated. Using the relationship deterioration scores, independent and multiple regression analyses were performed for the presence or absence of difficulty implementing infection control measures, presence or absence of caregivers' mental health concerns, and the presence or absence of deterioration of one or more problematic behaviors. RESULTS: Overall, 84.1% of the children displayed difficulties implementing infection prevention measures. No relationship was observed between difficulty with infection prevention measures and deterioration in their relationships with parents and friends when schools were closed. After school reopened, however, deterioration in parent‒child relationships correlated positively with difficulty in hand-washing, and deterioration of friendships correlated positively with the maintenance of social distancing and difficulty in hand-washing. Deterioration of friendships correlated negatively with difficulty in voluntarily complying with stay-at-home requests. CONCLUSION: Difficulty in implementing infection prevention measures was related to deterioration in social relationships with parents and friends of children with neurodevelopmental disorders during the school reopening period, following COVID-19 school closure in Japan. Under a condition requiring heightened infection control, close monitoring may be necessary for the social relationships in children with neurodevelopmental disorders.

Outcome of abusive head trauma in children less than 2 years: A single center study from a middle-income country.

BACKGROUND: Abusive head trauma (AHT) is a severe manifestation of physical abuse in young children. This study examines the outcome of AHT in children under 2 years and features associated with mortality and disability. METHODS: Retrospective chart review of 72 children under 2 years diagnosed to have AHT between 2011 and 2018 at a tertiary teaching hospital in Malaysia. Demographic variables, clinical features, results of neuroimaging and their associations with outcome were explored. RESULTS: The median age at presentation was 4 months, 78% were six months or younger and 68% were male. Two-thirds became unwell in the care of an alternative caregiver. Subdural hemorrhage was present in 98%. Mortality was 10%. Forty-nine survivors returned with median interval of 16 months (IQR 5-44 months) between discharge and last follow-up. At least 35% of 65 survivors were disabled with 29% having multiple disabilities. Multiple disabilities (61.1% versus 25.8%) and cognitive impairment (61.1% versus 22.6%) were significantly higher in children 3 years or older at last follow-up (p < 0.05). Signs of brainstem dysfunction at presentation, requirement for ventilation and hypoxic-ischemic injury on neuroimaging were associated with mortality. Needing ventilation, cerebral edema and neurological or visual impairment at discharge were associated with disability. CONCLUSIONS: Outcomes of death or disability in 42% make prevention of AHT a public health priority. Survivors require long-term multi-disciplinary follow-up for coordination of rehabilitation and educational support. Prevention should be directed at improving resources and services to support families in the care of young infants under 6 months.

Influence of the COVID-19 Pandemic on Parenting Stress Across Asian Countries: A Cross-National Study.

Background: In a previous study, we demonstrated that the accumulation of parenting stress during prolonged school closures and restrictions on daily activities due to the COVID-19 pandemic in Japan indicates the need for mental health intervention for parents at higher risk of parenting stress. However, few studies have focused on parenting stress in other Asian countries, although they have experienced higher numbers of infections. The aim of the present study was to investigate whether parenting stress among caregivers increased across Asia due to school closures and restrictions on activities during the COVID-19 pandemic and to examine whether there were any country-specific, cross-country, or cross-regional risk factors for increased parenting stress. Methods: We conducted an online survey immediately after the number of new cases in India significantly increased (September-November 2020). We measured parenting stress, anxiety, and fear associated with the COVID-19 crisis, as evaluated by the Parenting Stress Index, Short-Form (PSI-SF), and the Coronavirus Anxiety Scale (CAS), across three Asian countries-India (n = 142), Malaysia (n = 69), and Japan (n = 182)-in addition to the United States (n = 203). We also investigated whether respondents had adverse childhood experiences (ACE) as a risk factor for parenting stress. Results: For all countries, we found significant increases in participants' current parenting stress levels, compared to what they recalled regarding their lives before COVID-19-related restrictions and school closures were enacted. Textual analysis qualitatively identified common terms related to parenting stress across all countries. We also found a statistical model that indicated ACE in parents was a critical risk factor for higher parenting stress via increasing anxiety and fear related to the pandemic. Conclusion: These results indicate the need to improve the mental health of caregivers who are at risk for higher levels of parenting stress during the COVID-19 pandemic in Asian countries as well as Western countries. These results indicate that there is a need to improve the mental health of caregivers who are at risk for higher levels of parenting stress during the COVID-19 pandemic globally.

Health-related quality of life and developmental outcome of children on home mechanical ventilation in a developing country: A cross-sectional study.

BACKGROUND: Provision of home mechanical ventilation (HMV) to children with chronic respiratory insufficiency enhances growth and quality of life. The hypothesis was that health-related quality of life (HRQoL) and the development of these children were poorer than in healthy children. OBJECTIVES: To determine the HRQoL and developmental outcome of children on HMV. METHODS: This cross-sectional study used the TNO-AZL Preschool children's Quality Of Life (TAPQOL; <5 years old) and Health Utilities Index (HUI) 2/3 (≥5 years old) to assess the quality of life and the Schedule of Growing Skills-II to assess development. Instruments were used on children currently or previously on HMV (≥3 months) and compared with age and sex-matched controls. RESULTS: Sixty-five patients and 130 controls were recruited. Patients' median (interquartile range) age was 3.12 (1.65, 5.81) years. Patients had significantly lower TAPQOL scores in the domains of lung, liveliness, positive mood, social functioning, motor functioning, and communication, and lower HUI 2/3 scores in hearing, sensation, pain, speech, mobility, ambulatory, dexterity, and self-care domains. The developmental outcome of patients was poorer in all domains. However, patients had fewer behavioral problems. Those with respiratory tract disease and without comorbidities had better HRQoL and developmental scores. Having a parent as the primary caregiver was associated with better speech and language skills. CONCLUSIONS: HRQoL and the developmental outcome are lower in children on HMV compared to controls. Children with respiratory tract disease and without comorbidities have a better outcome. Parents play a crucial role in the acquisition of speech.