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BackgroundPeer support during inpatient hospitalization has been recommended for NICU parents and can improve maternal mental health. Less is known about the impact of peer support after NICU discharge on parental mental health and infant healthcare utilization.MethodsThree hundred families of infants approaching discharge from a Level IV NICU were randomized to receive a care notebook (control) or care notebook plus peer support for 12 months (intervention). Participants reported on measures of stress, depression, anxiety, self-efficacy, and infant healthcare utilization. Analysis compared outcomes between control and treatment groups.ResultsParental depression, anxiety, stress, and self-efficacy improved significantly for all participants, yet there were no differences between control and intervention groups. Infant ED visits, hospitalizations, immunization status, and developmental status at 12 months did not differ between groups.ConclusionsPeer support after NICU discharge did not improve self-reported parental mental health measures or infant healthcare utilization.Clinical trial registrationNCT02643472.

Objective: Nutrition and physical activity are key components of daily diabetes care in young children with type I diabetes (T1D). Normative developmental behavioral challenges related to nutrition and physical activity complicate management of T1D. The current pilot study evaluated the feasibility, acceptability, and indications of behavior change of an intervention aimed at improving nutrition and physical activity in young children with T1D. Method: Thirty-6 parents of young children (ages 2-5 years, M - 4.2) with T1D from 2 clinics in the Washington, DC area were randomized to receive the type One Training (TOTs) program or Usual Care (UC). Assessments included recruitment and completion rates, participant acceptability, and outcomes including glycemic variability via continuous glucose monitoring, nutritional intake via remote food photography, physical activity via accelerometers, and parental report on behavior and psychosocial functioning. Results: Despite recruitment challenges, the TOTs program was feasible to administer, with high program and assessment completion rates. Acceptability ratings were very high but differed by recruitment site. Participants randomized to TOTs had an increase in percent of time in target glycemic range and reduction in behavioral feeding problems between baseline and follow-up while those randomized to UC did not. Participants in UC demonstrated a decrease in in moderate to vigorous physical activity at follow-up. Conclusions: The TOTs program demonstrated preliminary feasibility and acceptability. Future research will examine components of treatment for evidence of efficacy and target the intervention to those most likely to benefit. Keywords: type 1 diabetes, young children, parents, eating, Type I diabetes (T1D) occurs in 1 in 500-600 children and incidence is increasing annually, with higher growth in young children ages 0-9 years (Dabelea et al., 2014; Mayer-Davis et [...]

Aims: There are marked inequities in clinical outcomes and rates of diabetes technology use among youth with type 1 diabetes (T1D). The quantitative data from our mixed methods cohort study identified significant improvements in glycaemia and quality of life in participants. We aimed to use qualitative methods to provide further insight into our quantitative findings in the setting of underlying health disparities. Methods: Fifteen publicly insured, insulin pump‐naïve non‐Hispanic Black youth aged 6–21 years with T1D and baseline haemoglobin A1c (HbA1c) ≥86 mmol/mol (10%) and their parents participated in a mixed methods cohort study. Semi‐structured interviews were conducted separately with parents and youth after completion of 6 months of HCL use. Three topic areas were explored: (1) Experience using HCL, (2) barriers to HCL and (3) facilitators to accessing HCL. Semantic content analysis and consensus coding involving two team members were used to generate themes. Thematic saturation was achieved. Results: Youth (Medianage 14.9 years, 67% female) and parents (92% female) were interviewed. Youth and their parents reported that access to HCL provides a new outlook on living with T1D, although managing T1D is still hard. They felt that diabetes technology is most helpful for those struggling with management. Participants experienced barriers to access including misconceptions of HCL systems, clinician bias and systemic racism. They suggested these barriers can be overcome by offering diabetes technology education for all people with T1D, increasing awareness of HCL in the community and providing resources to overcome barriers created by social determinants of health. Conclusions: The voices of historically minoritised youth with suboptimal T1D control and their parents provide important, previously unreported experiences and perspectives on barriers and facilitators to using HCL that will shape interventions to improve equity in access to diabetes technology. [ABSTRACT FROM AUTHOR]

Objectives: This paper explores parent coaching experiences supporting parents of young children newly diagnosed with type 1 diabetes in a clinical trial. Methods: In a trial for 157 parents, those in the intervention arm (n = 116) were paired with a parent coach (n = 37; Mage = 37.9 years, SD = 3.9; 94.6% mothers, 81.1% White non-Hispanic). Parent coaches provided diabetes-specific social support. Parent coaches completed monthly surveys and satisfaction/feasibility surveys, with a subset (n = 7) undergoing qualitative interviews at the end of this study. Results: There were 2262 contacts between participants and their parent coaches, averaging 14.4 (SD = 9.3) per participant. Parent coaches reported that the most commonly used methods were text messages (67.9%) and emails (18.7%), with 33.6% having in-person visits. Coaches reported high satisfaction and belief in their usefulness to participants during the first 9 months after T1D diagnosis. Themes discussed by parent coaches about their experience in mentoring included relationship building, expertise sharing, personal growth, gratification, and intervention optimization suggestions. Conclusions: Parent coaching post T1D diagnosis involves regular, multi-method contacts. It is highly acceptable and valuable for parent coaches to mentor other parents of young children newly diagnosed with T1D. [ABSTRACT FROM AUTHOR]

Background Many adolescents with type 1 diabetes experience diabetes distress which is associated with suboptimal glycemic and psychosocial outcomes. The ways in which adolescents respond to diabetes distress may serve as a risk or protective factor for these outcomes, but few studies have examined the coping strategies adolescents use to manage diabetes distress. Purpose To examine the association of coping strategies with glycemic and psychosocial outcomes among adolescents experiencing diabetes distress. Methods Participants included 198 adolescents with elevated diabetes distress who completed baseline data for a randomized controlled trial (M age = 15.3 ± 1.4, 58% female, 58% non-Hispanic White, M A1c = 9.1 ± 2.1%). Adolescents reported on their use of coping strategies related to diabetes stressors, including primary control engagement coping (e.g. problem-solving), secondary control engagement coping (e.g. positive thinking), and disengagement coping (e.g. avoidance). Adolescents also completed measures of diabetes distress, quality of life, and resilience. HbA1c data were extracted from electronic medical records and at-home kits. Results Higher use of primary control engagement coping was associated with better glycemic and psychosocial outcomes. Secondary control engagement coping was associated with better psychosocial outcomes but not glycemic outcomes. Greater use of disengagement coping strategies was associated with poorer glycemic and psychosocial outcomes. All associations were significant after adjusting for adolescent sex, age, race/ethnicity, and continuous glucose monitor use. Conclusions These results build on prior findings by including a more diverse sample of adolescents and highlight the value of promoting engagement coping strategies and discouraging the use of disengagement coping strategies among adolescents experiencing diabetes distress. Clinical Trial information NCT03845465. [ABSTRACT FROM AUTHOR]

Background: Given parents' elevated stress following children's diagnoses of type I diabetes (T1D), more information about protective factors is needed. The current study examined social support from various sources (e.g., partner, family, general) in relation to stress among mothers and fathers of young children shortly following T1D diagnosis. Methods: Participants included 157 children ages 1-6 recently diagnosed with T1D and their parents (152 mothers and 59 fathers) who were enrolled in a behavioral randomized controlled trial (RCT). Mothers and fathers self-reported on their demographic background, social support and stress; T1D data were parent report and/or gathered from medical records. Results: Maternal and paternal stress were examined in two separate regression models. Higher general social support predicted less stress for both mothers and fathers. For mothers, higher family support predicted less stress, while college educations status predicted more stress. For fathers, more partner support predicted less stress. Discussion: Findings contribute to the literature on gender differences in source-specific social support and psychosocial functioning in a pediatric health population. Sample characteristics limit generalizability of results, and future studies should aim to include diverse samples. Results have both scientific and clinical implications for supporting families following T1D diagnosis. Public Significance Statement Different psychosocial approaches may be needed to support mothers and fathers during their children's initial Tl D diagnoses. Keywords: T1D, parent stress, social support, Type I diabetes (T1D) diagnoses in young children have significantly increased in recent years (Streisand & Monaghan, 2014). The T1D medical regimen is complex, requiring frequent monitoring of blood glucose [...]

Autosomal recessive polycystic kidney disease (ARPKD; MIM 263200) is a severe, typically early onset form of cystic disease that primarily involves the kidneys and biliary tract. Phenotypic expression and age at presentation can be quite variable. The incidence of ARPKD is 1 in 20,000 live births, and its pleotropic manifestations are potentially life-threatening. Optimal care requires proper surveillance to limit morbidity and mortality, knowledgeable approaches to diagnosis and treatment, and informed strategies to optimize quality of life. Clinical management therefore is ideally directed by multidisciplinary care teams consisting of perinatologists, neonatologists, nephrologists, hepatologists, geneticists, and behavioral specialists to coordinate patient care from the perinatal period to adulthood. In May 2013, an international team of 25 multidisciplinary specialists from the US, Canada, Germany, and the United Kingdom convened in Washington, DC, to review the literature published from 1990 to 2013 and to develop recommendations for diagnosis, surveillance, and clinical management. Identification of the gene PKHD1, and the significant advances in perinatal care, imaging, medical management, and behavioral therapies over the past decade, provide the foundational elements to define diagnostic criteria and establish clinical management guidelines as the first steps towards standardizing the clinical care for ARPKD patients. The key issues discussed included recommendations regarding perinatal interventions, diagnostic criteria, genetic testing, management of renal and biliary-associated morbidities, and behavioral assessment. The meeting was funded by the National Institutes of Health and an educational grant from the Polycystic Kidney Disease Foundation. Here we summarize the discussions and provide an updated set of diagnostic, surveillance, and management recommendations for optimizing the pediatric care of patients with ARPKD. Specialist care of ARPKD-related complications including dialysis, transplantation, and management of severe portal hypertension will be addressed in a subsequent report. Given the paucity of information regarding targeted therapies in ARPKD, this topic was not addressed in this conference.”

Introduction: Asthma is the most common pediatric chronic disease and disproportionately affects urban, minority, and disadvantaged youth. This study explored the relationship between parent and child psychosocial functioning and asthma-related health outcomes in a sample of at-risk children with asthma. We hypothesized that greater parent resilience would be associated with better parent mood, more symptom-free days (SFDs), better child mood, and less child anxiety. Further, we hypothesized that parent resilience would moderate the relationship between parent mood and SFDs. Method: We performed a secondary analysis of baseline cross-sectional enrollment data. Parents of African American children on Medicaid with persistent asthma reported their children's asthma SFDs and their own measures of parent quality of life, mood, and resilience, and child mood and anxiety. Results: Baseline data from 217 parents (92.2% female, [M.sub.age] = 33.8 years [+ or -] 9.5) of children ([M.sub.age] = 6.6 years [+ or -] 2.3) were available. Parent resilience was significantly associated with parent mood. Better parent-reported quality of life (QOL) and mood were significantly associated with more child asthma SFDs. In contrast to our hypothesis, parent resilience did not moderate the relationship between parent mood and SFDs. Discussion: Higher parent-reported QOL and mood were significantly associated with better parent report of child asthma SFDs. Although parent resilience was associated with parent mood, it did not moderate the relationship to child SFDs. Future research is warranted to better understand the unique contribution of resilience in families with children with asthma. Keywords: asthma, pediatrics, parents, depression, resilience, In the United States, asthma is the most common chronic disease in pediatric populations, with almost 9% of children and adolescents under the age of 18 years having an asthma [...]

For older adolescents and young adults (AYAs) with type 1 diabetes, successful transition from pediatric to adult diabetes care requires ongoing planning and support. Yet, the transition to adult care is not always smooth. Some AYAs struggle to leave pediatric care or experience significant gaps between pediatric and adult diabetes care. The use of diabetes-specific transition readiness assessments can inform transition planning and support successful preparation for adult care. This study evaluated transition readiness in a diverse sample of AYAs nearing transition to adult diabetes care. Findings suggest that AYAs may benefit from additional preparation and education related to sexual health, tobacco use, and diabetes complications. [ABSTRACT FROM AUTHOR]