Parenting a Child with Autism Spectrum Disorder: A Qualitative Study

Background: Research in India has seldom studied caregivers’ perceptions, experiences, and needs for information and personal support after an autism spectrum disorder (ASD) diagnosis. Objectives: The objectives of the study were to understand the perceived barriers for obtaining a diagnosis and the perspectives and experiences of parents of children with autism. Materials and Methods: Parents with a diagnosed ASD child (within a year of diagnosis) in the 3–8 years range were recruited from the Pediatric Psychology and Neurodevelopmental Clinic from a tertiary care teaching hospital in North India. An interview guide elicited information about experiences regarding obtaining an ASD diagnosis, perceived barriers and facilitators, reactions to diagnosis, postdiagnostic family and community experiences, and stress experienced by parents. Qualitative responses were analyzed using thematic analysis. Participants were recruited till there was a saturation of themes. The ethics clearance was provided by the institutional review board. Results: Twenty-eight caregivers of children with ASD were recruited for the study. Overall, nine themes were identified from the qualitative analysis of the interviews: two before diagnosis (delayed help?seeking and experiences with healthcare), one at the time of diagnosis disclosure (heightened emotional response to diagnosis), and six themes after the diagnosis (increased stress, behavioral challenges, deterioration in family relationships, negative attitudes of the family, seeking support, and moving forward with hope for the future). Conclusions: There are several barriers and gaps in the autism-related available services in the country, and there is a need to provide inclusive, supportive, culturally sensitive, and family-centered model of care for parents raising children with ASD.

Financial Burden in Families of Children with West Syndrome

Objective To evaluate the illness-related expenditure by families of children with West syndrome (WS) during the first year of illness and to explore the potential determinants of the financial drain. Methods This cross-sectional study was conducted at a tertiary care hospital between July 2018 and June 2020. Eighty-five children with WS who presented within one year from the onset of epileptic spasms were included. The details of the treatment costs (direct medical and nonmedical) incurred during the first year from the onset of epileptic spasms were noted from a parental interview and case record review. Unit cost was fixed for drugs and specific services. Total cost was estimated by multiplying the unit cost by the number of times a drug or service was availed. The determinants of the financial burden were also explored. Results The median monthly per-capita income of the enrolled families (n = 85) was INR 3000 (Q1, Q3, 2000, 6000). The median cost of treatment over one year was INR 27035 (Q1, Q3, 17,894, 39,591). Median direct medical and nonmedical expenses amounted to INR 18802 (Q1, Q3, 12,179, 25,580) and INR 6550 (Q1, Q3, 3500, 15,000), respectively. Seven families had catastrophic healthcare expenditure. Parental education and choice of first-line treatment were important determinants driving healthcare expenses. The age at onset of epileptic spasms, etiology, treatment lag, the initial response to treatment, and relapse following initial response did not significantly influence the illness-related expenditure by the families. Conclusion WS imposes a substantial financial burden on the families and indirectly on the healthcare system.

Long-term Seroprotection Rates Following Second Dose of Measles as MMR Vaccine at 15 months in Indian Children

Objective: To find out seropositivity rates at 4-6 and 9-12 years of age; among those whoreceived one-dose measles at 9 months and one-dose MMR at 15 months of age. Methods:80 healthy children (53 males) at 4-6 or 9-12 years of age, attending outpatient departmentfor vaccination were enrolled. Antibody titers were estimated using commercially availablequantitative-IgG ELISA kits. Results: The seropositivity rates against measles, mumps,rubella were 80% (40/50), 86% (43/50), and 96% (48/50), respectively at 4-6 years, and83.3% (25/30), 96.7% (29/30) and 96.7% (29/30), respectively at 9-12 years of age.Conclusion: Single dose of rubella vaccine seems to provide adequate long-termprotection; however, measles vaccine requires more doses for similar protection.

Characterization of Shiga-toxigenic Escherichia coli isolated from cases of diarrhoea & haemolytic uremic syndrome in north India.

Background & objectives: Shiga toxin producing Escherichia coli (STEC) is an important zoonotic foodborne pathogen, capable of causing haemorrhagic colitis (HC) and haemolytic uremic syndrome (HUS). As data from India on human infections caused by STEC are limited, this study was carried out for hospital based surveillance for STEC as a causative agent of diarrhoea, bloody diarrhoea and HUS at a tertiary care centre and to study the virulence gene profile and strain relatedness by multi locus variable tandem repeat analysis (MLVA). Methods: A total of 600 stool samples were studied. Stool samples of every fifth patient presenting with non-bloody diarrhoea, all cases of bloody diarrhoea and diarrhoea associated HUS (D+HUS) were collected from October 2009 to September 2011. Stool samples were cultured for STEC and characterization of STEC was done by serogrouping, virulence genes analysis, and MLVA typing. Results: STEC were isolated as a sole pathogen from 11 stool samples [5 of 290 (1.7%) non-blood diarrhoea and 5 of 300 (1.6%) blood diarrhoea cases]. STEC was also isolated from one fatal case of HUS who was an eight month old child. Only six of 11 isolates were positive for stx2 gene, whereas stx1 was present in all 11 isolates. Only one isolate was positive for eae. Other adhesion genes present were iha in five isolates, followed by toxB and efa1 in two each and saa gene in one, isolate. Among the plasmid encoded genes, espP, hly and etpD were each present in one isolate each. In the MLVA typing, diverse profiles were obtained except two untypeable isolates from different patients shared the same MLVA profile. Both these isolates were not epidemiologically linked. Interpretation & conclusions: This study demonstrated that STEC could be a causative agent of diarrhoea, bloody diarrhoea and sporadic HUS. However, further work needs to be done to study and explore the prevalence of these organisms in the food chain in this region.

Vaccine Related Reactogenicity for Primary Immunization: A Randomized Controlled Trial of 23(Wider) vs. 25 (Narrower) Gauge Needles with Same Lengths.

Objectives To compare vaccine related reactogenicity during primary immunization in healthy infants using 23 vs. 25 gauge needles. Methods This randomized controlled trial was conducted in Vaccination Room of the Advanced Pediatrics Center. 155 participants for primary immunization were assigned to two intervention groups (23 vs. 25 gauge). Parent-reported local and systemic reactions were recorded daily for three days after the immunization. Results Swelling (24%) and tenderness (21%) were the two most common parent-reported local symptoms followed by restriction of movements (18%) and redness (10%) on day 1. Any local reaction on day 1 was statistically similar in 25 gauge vs. 23 gauge group (RR 0.77; 95%CI: 0.32 to 1.82) (P= 0.54), but fever (day 1) showed higher trend in 23 gauge needle group (RR 2.24; 95% CI: 0.92–5.47) (P=0.07). Furthermore, on analysis of serially reported local and systemic reactions for 3 consecutive days by generalized estimating equations, odds of redness, swelling, tenderness, restricted movement and fever were statistically similar between two needle groups. On the other hand, median (±SE) crying time (in seconds) was significantly prolonged in the 25 gauge needle (39±2) as compared to 23 gauge group (30±1.3) (log rank test, P=0.001). Conclusions The use of same length needles with narrower (25) or wider (23) gauge did not show significant differences in local reactogenicity during primary immunization. Fever, however, was reduced marginally in 25 gauge group whereas crying duration was significantly shorter with 23 gauge needle. Finally, larger studies are needed to further evaluate objectively the outcome of reactogenicity.

Association of fungal sepsis and galactosemia.

Galactosemia is one of the rare inborn errors of metabolism, which if detected early can be treated effectively. Galactosemic infants have a significant increased risk of developing sepsis. E. coli sepsis is a known entity, and also an important cause of early mortality in these children. But fungal sepsis in these patients is rarely reported. Here is a case of 45 day-old child who presented with fungal sepsis, which on investigation turned out to be galactosemia.

Role of chest X-ray in predicting outcome of acute severe pneumonia.

OBJECTIVE: Radiological appraisal in children with clinically diagnosed severe pneumonia and its association with clinical outcome. DESIGN: Prospective. SETTING: Civil Hospital in Himachal Pradesh. PATIENTS: Eighty-three children hospitalized with severe pneumonia. RESULTS: Lobar consolidation (n=43, 51.8%) was the most common radiological abnormality. Twenty six (31.3%) had interstitial abnormalities and 14(16.9%) had normal chest radiographs. Clinical characteristics at admission could not predict a radiographic abnormality. Time to defervescence for outcome measures of fever and tachypnea was similar in children with consolidation, interstitial pneumonia or normal radiograph. However, length of hospital stay was significantly longer in children with abnormal chest radiographs on univariate analysis. CONCLUSION: Radiological findings in hospitalized children with clinically defined severe pneumonia have limited value in predicting clinical improvement.

Role of Acute Illness Observation Scale (AIOS) in managing severe childhood pneumonia.

OBJECTIVE: In the perspective of integrated management of childhood illness (IMCI) strategy and recent evidence favoring use of oral antibiotics in severe pneumonia, a generic illness severity index--Acute Illness Observation Scale (AIOS)--was prospectively validated in children with severe pneumonia in a civil hospital in remote hilly region. METHODS: AIOS was used in quantifying overall severity of illness for eighty-nine consecutive children (age, 2-59 months) hospitalized with community-acquired severe pneumonia. A detailed clinimetric evaluation of scale was carried out and logistic regression analyses predicted the following outcomes: 1) mode of initial antimicrobial therapy (oral vs. parenteral); and 2) need for intravenous fluids at admission. RESULTS: Majority of children (80.9%) with severe pneumonia scored abnormally (AIOS score> 10) at initial evaluation. Children with abnormal AIOS scores (>10) had significantly greater severity of respiratory distress and higher incidence of radiological pneumonia. Outcome measures i.e. time to defervescence and length of hospital stay were also positively and significantly correlated with the scores. The six-item scale had good internal consistency (Cronbach's alpha 0.81); and its factor analysis yielded a single latent factor explaining 54% of variance in illness severity at admission. Furthermore, logistic regression analyses revealed an independent predictive ability of AIOS in aiding clinician to decide the mode of initial antimicrobial therapy (oral or parenteral), as well as need for intravenous fluids. CONCLUSION: Authors study indicates the clinimetric validity of AIOS in managing, Severe childhood pneumonia and suggests its role in further enriching IMCI strategy.

Severe pneumonia in a remote hilly area: integrated management of childhood illness.

OBJECTIVE: This study aims to profile children with severe pneumonia in the perspective of Integrated Management of Childhood Illness (IMCI) strategy in a resource-constrained environment. METHODS: 115 consecutive children, aged 2 months to 10 yr, hospitalized with severe pneumonia were prospectively evaluated between May 1997 and June 1998 at a civil hospital in the northern hilly state of India. RESULTS: All children had tachypnea and lower chest wall indrawing. Grunting was observed in 39.7%, inability to drink in 16.5%, and cyanosis in 1.7% cases. Radiological investigation was carried out only in 90 children that included abnormal chest radiographs (CXRs) in 76.6% cases. Feeding malpractices, vaccination inconsistencies, exposure hazards to smoking, micronutrient as well as macronutrient deficiencies, treatment from unqualified practitioners, inconsequential involvement of health care workers, predominant burden on mothers in the care of sick children, failure to recognize signs and symptoms of pneumonia by parents at home, lack of oxygen facilities, problems of accessibility and less faith on primary health care services were widely prevalent bottlenecks for effective implementation of 3 components of IMCI. CONCLUSION: Our study offers practical insights that can be useful in customizing IMCI to needs of children with pneumonia in a resource-constrained environment.

Patterns and problems of sleep in school going children.

This study was conducted to assess the sleep habits and problems of 103 young school going healthy children (3-10 yr) during their visit to hospital for minor illnesses or routine health visits for immunization. The average duration of daily sleep (nocturnal and daytime nap) was 10.32 and the percentage of children who took regular daytime nap was 28.2%. Co- sleeping, a traditional cultural practice in India was found in 93% of the children. Sleep related problems were reported in 42.7% children that included nocturnal enuresis (18.4%), sleep talking (14.6%), bruxism (11.6%) nightmares (6.8%), night terrors (2.9%) snoring (5.8%) and sleepwalking (1.9%). On univariate analysis, sleep related problems were notably common if it was nuclear family (Fishers exact test; P = 0.01), mother was younger in age (Mann Whitney U test; P= .04) and less educated (Mann Whitney U test; P=.04). However, when these predictors were entered simultaneously into a logistic regression model, only nuclear family remained as significant predictor of sleep related disorders (odds ratio 2.41; CI; 1.04-5.57). We conclude that sleep problems are frequent among healthy school going children seen at general pediatric practice.

Persistent coagulopathy in snake bite.

Bleeding diathesis is a cardinal feature of viperine bite, which has been thought to last not more than 24 hours. There is scarcity of literature about prolonged bleeding disorder in snake envenomation. Various explanations suggested in the literature include-temporary decrease in antivenin levels, rapid elimination of antivenin from circulation or continuous release of unneutralised venom from the envenomated site. Two children with prolonged coagulopathy lasting for more than a week, correction of which required more than 300 ml of antisnake venom are reported here.

Measles in a hilly hamlet of northern India.

OBJECTIVE: To ascertain the epidemiological links and risk factors responsible for the epidemic of measles in the village Astani in Himachal Pradesh. METHODS: All the children less than twelve years who were present on 27th July 1997 were evaluated. A questionnaire requesting data on vaccination history and symptoms of measles was administered and complete physical examination including anthropometry was recorded in each child by the authors. The data also included complications (including that of death) secondary to measles infection. RESULTS: A total of 48 children less than 12 years, present in the hamlet on 27th July 1997, were examined, out of which 28 (58%) were affected and 20 (42%) were unaffected. The immunization coverage in the affected children was 33% in contrast to 70% coverage in the unaffected group. Vaccine efficacy in the present epidemic was 51%. The complication rate was 59%, which included one death. The anthropometric data showed that 92% of the affected children were malnourished. All the children were given age appropriate dose of Vitamin A and children of the nearby villages were vaccinated against measles as a part of outbreak control. CONCLUSION: This study clearly highlights the need to achieve and sustain high immunization coverage along with strengthening of the routine surveillance systems in remote village of India.