Co-occurring medical conditions among individuals with ASD-associated disruptive mutations
Children with autism spectrum disorder (ASD) are at risk for co-occurring medical conditions, many of which have also been reported among individuals with mutations in ASD-associated genes. This study examined rates of co-occurring medical conditions across 301 individuals with disruptive mutations to 1 of 18 ASD-risk genes in comparison to rates of conditions in an idiopathic ASD sample. Rates of gastrointestinal problems, seizures, physical anomalies, and immune problems were generally elevated, with significant differences in rates observed between groups. Results may inform medical care of individuals with ASD-associated mutations and research into mechanisms of co-occurring medical conditions in ASD.
Vaccine Hesitancy and Illness Perceptions: Comparing Parents of Children with Autism Spectrum Disorder to other Parent Groups
Fears persist despite compelling evidence refuting associations between vaccines and autism spectrum disorder (ASD). We compared vaccine hesitancy (VH) and beliefs about illness causes among parents of children in four groups: ASD, non-ASD developmental disorders, rheumatologic conditions, and the general pediatric population. VH was 19.9% overall; parents of children with ASD reported highest VH rates (29.5%) and more frequently attributed ASD to toxins in vaccines (28.9% vs. 15.7%, p=0.004). The odds of VH were increased among parents who attributed their child's condition to diet or eating habits (aOR 4.2; 95% CI: 1.6, 11.2) and toxins found in vaccines (aOR 20, 95% CI: 7.1, 55.9). Parents who attributed the condition to chance or bad luck were less likely to be vaccine hesitant (aOR 0.1; 95% CI: 0.03, 0.5).
Unmet health need and perceived barriers to health care among adolescents living in a rural area
This study investigated the perceived health care needs, unmet health need, and barriers to health care in 224 rural-dwelling adolescents. A cross-sectional, descriptive design was used to survey adolescents attending a public high school in a low-resource, rural Indiana community. One in five adolescents reported an unmet health need. The most common barriers to health care were related to access, apathy, anxiety, and parenting issues. Implications include confidentiality protocols in family healthcare practices, school-based health centers, and intervention research targeting adolescents' communication skills and healthcare consumer skills.
Concurrent and Longitudinal Associations among Parenting Style, Responsibility, and Adherence in Youth with Cystic Fibrosis
In an effort to identify pathways for improvements in clinical monitoring and intervention, the current study investigated the role that parenting style plays in treatment adherence and responsibility for youth with CF. Participants ( = 50) completed questionnaires related to treatment adherence, treatment responsibility, and parenting style at baseline and at a two year follow up visit. Aspects of parenting style (e.g., warmth, autonomy support) were related to youth adherence and responsibility in cross-sectional and prospective analyses. These data suggest that aspects of parenting may be important targets of interventions to promote treatment adherence in youth with CF.
Parent perspectives on the educational barriers and unmet needs of children with cancer
Childhood cancer challenges academic success and school engagement, yet little research has described these hardships. This study documented parental perspectives of the educational barriers and unmet needs of youth treated for cancer ( = 102). Treatment-related physical sequelae were noted as common problems interfering with school attendance and engagement. One-fourth of parents reported worse academic performance since diagnosis; however, many never had their child evaluated (63.3%) or enacted formalized educational accommodations (55%). Findings reflect educational challenges across the continuum of cancer care and survivorship, and highlight the importance of education of school staff on both acute and long-term effects of cancer treatment.
Proof-of-Concept Trial of a Tablet-based Program in Pediatrics to Motivate Parental Use of an Online Behavioral Parent Training Program
Internet-based parent training is a promising intervention approach for child disruptive behavior. However, engagement in these interventions is limited. The Parenting Young Children Check-up (PYCC) was designed to improve engagement in internet-based parent training programs via three components: 1) an initial check-up, 2) text messages, and 3) a website. This proof-of-concept trial used feedback from parents and pediatric clinic staff to evaluate feasibility as well as the extent to which the initial check-up was associated with behavioral intentions to use the PYCC website. Pediatric staff and parents rated the PYCC highly, and parents reported interest in using the PYCC website.
Family-based treatment for pediatric eating disorders: Evidence and guidance for delivering integrated interdisciplinary care
Eating disorders (EDs) are complex psychiatric diagnoses requiring specialized care. Family-based treatment (FBT) is the first-line treatment for adolescent anorexia nervosa and is also efficacious for other EDs. This study describes practice changes due to the implementation of an integrated interdisciplinary FBT-aligned treatment program for EDs at a large tertiary care hospital in the United States. We examined the feasibility and acceptability of implementation, barriers to implementation, and impact on providers' roles over a one-year period. Practice changes came with shifts in roles, and were largely experienced as acceptable with good suitability. Barriers identified may inform future interdisciplinary implementation efforts.
Sleep Patterns and Anxiety in Children Interact to Predict Later Suicidal Ideation
Elevated levels of childhood anxiety pose risk for suicide; however, factors that accentuate this risk are unknown. Seventy-one children participated in a longitudinal study investigating anxiety and sleep in childhood (between 7-11 years) and later suicidal ideation (SI; = 3.3 years later). Sleep was assessed via subjective reports and objective measures (actigraphy and polysomnography). Children with greater anxiety symptoms were at greater risk for later SI when sleep disturbances were present in childhood. Results suggest that sleep disruption may amplify SI risk in anxious children.
Barriers to Participation in a Telemedicine-based, Family-based Behavioral Group Treatment Program for Pediatric Obesity: Qualitative findings from Rural Caregivers
This study examined factors influencing rural caregivers' decision to decline participation in a healthy lifestyle intervention. Eligible caregivers of rural children who declined participation in a healthy lifestyle intervention were interviewed regarding reasons for declining. Inductive thematic analyses were conducted for responses. Caregiver interviews (n=16) resulted in 5 saturated themes: (1) rural families' household schedules prohibit participation, (2) preference for diverse treatment approaches, (3) desire for information across multimedia platforms, and more communication with a point-of-contact, (4) support for an inclusive approach integrated with existing school practices, and (5) caregivers had an understanding of behaviors that promote health.
A Neurobehavioral Continuum of Care for Individuals with Intellectual and Developmental Disabilities with Severe Problem Behavior
The Neurobehavioral Programs at Kennedy Krieger Institute constitute a comprehensive continuum of care designed to serve individuals with intellectual and developmental disabilities with co-occurring problem behavior. This continuum includes inpatient, intensive outpatient, outpatient, consultation, and follow-up services. The mission of these programs is to fully integrate patient care, research, training, and advocacy to achieve the best possible outcomes with patients, and to benefit the broader community of individuals with severe behavioral dysfunction. The primary treatment approach utilized across all programs is applied behavior analysis, however the inpatient unit also provides fully integrated interdisciplinary care. Factors driving the development and expansion of these programs are described, as are the processes and systems by which the mission objectives are achieved.
Sleep Disorders, Sleep Medication Use, and Predictors of Sleep Disturbance in Children with Persistent Tic Disorders
The present study examined rates of sleep disorders and sleep medication use, and predictors of sleep disturbance in children with persistent tic disorders (PTD). Sixty-three parents of children aged 10 to 17 years with PTDs completed an internet survey evaluating sleep patterns and clinical symptoms. Insomnia (19.4%), nightmares (16.1%), and bruxism (13.1%) were the most commonly reported lifetime sleep disorders. Fifty-two percent endorsed current sleep medication use. Higher ADHD severity, overall life impairment, and female sex predicted greater sleep disturbance. Findings suggest the utility of clinical management of co-occurring ADHD and impairment to mitigate sleep disturbance in children with PTDs.
Youth and Parent Perceptions of Youth Decision-Making Roles Regarding Evaluation for Short Stature
Youth decision-making involvement (DMI) in medical treatment associates with greater adherence and feelings of self-efficacy. However, little is known about youth DMI regarding medical evaluation and diagnostic procedures. Using thematic analysis of semi-structured interviews, we explored parent (n=24) and youth (n=24) perceptions of youth roles in the decision to undergo evaluation for short stature. Five themes emerged about evaluation decisions including: parents/providers were gatekeepers, some parents sought youth agreement, conversations focused on logistics, some parents gave limited information, and youth expressed anxiety. Results suggest that including youth in discussions about evaluation may alleviate anxiety and uncertainty about upcoming procedures.
Health-risk Behaviors and Type 1 Diabetes Outcomes in the Transition from Late Adolescence to Early Emerging Adulthood
This study examined within- and between-person associations between health-risk behaviors (smoking, drinking, insulin withholding) and type 1 diabetes (T1D) outcomes (adherence and HbA1c) during the high-risk transition from late adolescence to early emerging adulthood utilizing a 2-year longitudinal study. Beginning in the senior year of high school, participants ( = 197) with T1D completed measures of health-risk behaviors, adherence, and HbA1c annually at three time points. Health-risk behaviors were associated with poorer diabetes outcomes during the transition from late adolescence to early emerging adulthood. These results highlight the importance of monitoring health-risk behaviors regularly and intervening to reduce health-risk behaviors during this important developmental transition.
The impact of COVID-19 on rural treatment-seeking families with children with overweight or obesity
To examine the early impact of the COVID-19 pandemic on rural parental stress and family behaviors, parents who participated in a 2-4 grade pediatric obesity intervention completed a survey in May 2020. Parents (N=77) experienced 7.8±2.7 events on the COVID-19 Exposure and Family Impact Scales (CEFIS) with an average impact of 2.5±0.5, with many parents reporting moderate stress (73%). Parental stress was predictive of personal well-being getting 'worse' while loss of income events were predictive of family routines getting 'better.' Professionals working with rural families may want to assess for these factors when promoting positive changes in family health behaviors.
Secondary Impact of a Behavioral Intervention on Dietary Quality in Preschoolers with Obesity
A Qualitative Inquiry of Parents' Observations of Their Children's Mental Health Needs During the COVID-19 Pandemic
Given that children and adolescents are at critical periods of development, they may be particularly vulnerable to the effects of the COVID-19 pandemic. Using a descriptive phenomenological approach, 71 parents' observations of their child's mental health difficulties were explored. Parents sought out treatment because their children were experiencing significant distress. Data used were transcribed from baseline questionnaires and therapy summaries. Data analysis revealed three themes: emotion regulation difficulties, hypervigilance, and despair. The search for strategies and tailored interventions to help mitigate the potential harmful and long-term mental health impacts of the pandemic should be at the forefront of research and clinical practice.
Pain, Pain Catastrophizing, and Individual Differences in Executive Function in Adolescence
Many adolescents will experience pain at some point in their development that can lead to poor quality of life. The largest risk factor for pain is tendencies to magnify and ruminate on pain, known as pain catastrophizing. One mechanism of catastrophizing may be difficulties with executive function, or the ability to cognitively control information. The objective of the current study was to determine if adolescent executive function difficulties relate to high catastrophizing and pain. Fifty adolescents completed measures of pain, pain catastrophizing, and executive function. Path models revealed relations among gender, executive function domains, pain catastrophizing domains, and pain. In general, pain catastrophizing was associated with problems with shifting and inhibition. Females reported high catastrophizing and pain, partially explained by executive function difficulty. Executive function difficulty may help clinicians identify adolescents prone to catastrophize painful events. Interventions addressing these difficulties may reduce catastrophizing as well as pain intensity and duration.
Prospective associations between pre-sleep electronics use and same-night sleep in healthy school-aged children
Electronic devices are routinely associated with adverse effects on sleep; however, prospective studies among healthy children are unavailable. This study examined relationships among specific and total electronic device use within the hour before bed and same-night sleep patterns among 55 pre-pubertal children (7-11 years) without medical, psychiatric or sleep disorders. Sleep was assessed via subjective reports and actigraphy for 5 weeknights and pre-bed device use was assessed via daily diary. Neither total devices use nor any single type predicted sleep parameters the same night. The extent to which pre-bed electronics use impacts sleep in healthy children requires further investigation.
Relationships and the development of transition readiness skills into early emerging adulthood for individuals with type 1 diabetes
The study examined how 'transition readiness' skills develop from relationship processes with parents, friends, and healthcare providers. During their senior year of high school and one year later, participants ( = 217) with type 1 diabetes completed measures of transition readiness skills (Self-Management; Self-Advocacy), adherence, HbA1c, and relationships with providers (patient-centered communication), parents (monitoring/knowledge), and friends (knowledge/helpfulness) surrounding diabetes. Self-Management skills increased across time. Higher friend knowledge/helpfulness during emerging adulthood was associated with increased Self-Management skills. Adherence improved when relationships with providers and friends matched transition readiness skills, indicating that these relationships may facilitate transition skills in early emerging adulthood.
Delay discounting and symptoms of anxiety and depression in adolescents experiencing challenges with managing type 1 diabetes
We examined if anxiety/depression, delay discounting (DD), and their interaction were associated with greater A1c levels and reduced medical adherence in adolescents with type 1 diabetes (T1D). Sixty-one adolescents with T1D completed a DD task and an A1c blood test. Adherence was assessed by self-monitoring of blood glucose (SMBG) using glucometer data. Anxiety/depression was assessed using a parent-completed questionnaire. Greater DD was associated with higher A1c, but not SMBG. Anxiety/depression was not associated with A1c or SMBG. Greater anxiety/depression magnified the effect of DD on A1c. Anxious/depressed symptoms may be a target for youth with T1D to improve glycemic control.