Call to Action: Screening and Addressing Caregiver Mental Health Needs within all Pediatric Medical Subspecialty Settings as Standard of Care.

Objective: The objective of this topical review is to provide rationale for the development of standards of care to address the mental health needs of caregivers of youth with chronic and acute conditions.

Methods: In this topical review, we describe the relationship between pediatric medical conditions and caregiver mental health, the state of available screening and intervention options, standards of care in medicine, existing caregiver mental health standards in pediatric subspecialty populations, and exemplar caregiver mental health programs that were developed in response to standards. Finally, we will describe our rationale for this standard of care, provide a call to action, and describe anticipated challenges in developing and implementing such standards.

Trajectories of self-management and independence in youth with spina bifida: Family-related predictors of growth.

The purpose of this study was to assess family-related predictors of self-management trajectories in youth with spina bifida (SB). Participants with SB completed the Adolescent/Young Adult Self-Management and Independence Scale (AMIS II) interview across four time points. Family functioning, family-related stress, and perceived family support were assessed by multiple reporters and multiple methods.

A Psychosocial Care Model for Families Affected by Congenital Heart Disease.

Objectives: To develop a model of family-based psychosocial care for congenital heart disease (CHD).

Design: Qualitative study using crowdsourced data collected from parents of young children with CHD who received care across 42 hospitals.

Setting: Yammer, a social networking platform used to facilitate online crowdsourcing and qualitative data collection.

Self-Management in Youth With Spina Bifida: Associations With Parent Factors in the Context of a Summer Camp Intervention.

Objective: To investigate cross-sectional and longitudinal associations between parent factors and self-management for youth with spina bifida (SB).

Methods: Participants were 89 camper-parent dyads recruited for a summer camp program for youth with SB (Myouthage = 12.2 years); 48 of these families participated across 2 years.

Discrepancies in Parent Perceptions of Child Vulnerability in Youth With Spina Bifida.

Objective: This study aimed to describe informant discrepancies between mother and father reports of child vulnerability in youth with spina bifida (SB) and examine variables that were associated with these discrepancies.

Methods: Ninety-two parent dyads, with a child with SB (ages 8-15 years), were recruited as a part of a longitudinal study. Mothers and fathers completed questionnaires assessing parental perception of child vulnerability (PPCV), as well as medical and demographic information, behavioral aspects of the couple relationship, parenting stress, mental health of the parent, and child behavioral adjustment.

Technology usage and barriers to the use of behavioral intervention technologies in adolescents and young adults with spina bifida.

Purpose: The majority of behavioral intervention technologies (BITs) have been designed and targeted towards the general population (i.e., typically-developing individuals); thus, little is known about the use of BITs to aid those with special needs, such as youth with disabilities.

Development of an Observational Parental Scaffolding Measure for Youth with Spina Bifida.

Objective: To examine the reliability and validity of a new observational measure of parental scaffolding, as well as the impact of parental scaffolding on academic and social outcomes among youth with spina bifida (SB).

Methods: As part of a larger study, 137 families of youth with SB participated in family interaction tasks and self-report questionnaires at the baseline assessment. Teachers also reported on youth's academic independence and competence, as well as social skills.

Pathways by which Maternal Factors are Associated With Youth Spina Bifida-Related Responsibility.

Objective: Achieving condition-related autonomy is an important developmental milestone for youth with spina bifida (SB). However, the transfer of condition-related responsibility to these youth can be delayed due to parent factors. This study aimed to investigate two potential pathways by which maternal factors may be associated with condition-related responsibility among youth with SB: (a) Maternal adjustment → perception of child vulnerability (PPCV) → youth condition-related responsibility; and (b) Maternal PPCV → overprotection → youth condition-related responsibility.

Longitudinal associations between neuropsychological functioning and medical responsibility in youth with spina bifida: The moderational role of parenting behaviors.

For youth with spina bifida (SB), the transfer of medical responsibilities from parent- to self-management is an important component of autonomy development. Youth with SB are at risk for neurocognitive impairments with inattention and executive dysfunction, which may impact their ability to take responsibility for medical tasks. However, adaptive parenting may buffer against the negative impact of executive/attentional dysfunction on levels of medical responsibility.

Friendship Quality Over Time in Youth With Spina Bifida Compared to Peers.

Objective: Examine friendship qualities (i.e., control, prosocial skills, positive affect, support, companionship, conflict, help, security, and closeness) and perceived self-efficacy in friendships of children with spina bifida (SB) and chosen peers over time through observed behaviors and self-report.

A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida.

Objective: Behavioral intervention technologies (BITs) stand as a promising delivery mechanism that overcomes multiple condition-specific and access barriers for self-management interventions for adolescents and young adults with spina bifida (AYA-SB). The purpose of the current review was to synthesize the behavioral and self-management intervention literature in conditions that have overlapping symptoms with youth with SB and to develop a model of likely user needs for AYA-SB that promotes self-management.

Method: The search strategy was conducted by a medical research librarian in the following databases: MEDLINE (Ovid), EMBASE (Elsevier), PsycINFO (EbscoHost), the Cochrane Library (Wiley), and Web of Science (Thomson Reuters) databases.

Parental Distress and Stress in Association with Health-Related Quality of Life in Youth with Spina Bifida: A Longitudinal Study.

Objective: This study examined associations between 3 distinct parent factors (parent personal distress, parenting stress, and spina bifida (SB)-specific parenting stress) and youth and parent proxy reports of youth health-related quality of life (HRQOL) over time.

Method: Participants were recruited as part of a longitudinal study, and data were collected at 3 time points, spaced 2 years apart. Parents and youth completed questionnaires, and youth completed neuropsychological assessment tasks to determine youth intelligence quotient during home visits.

Combined Treatment for Obesity and Depression: A Pilot Study.

Objective: Obesity and depression frequently co-occur, and each increases risk for cardiovascular disease (CVD). This study tested whether a combined treatment, targeting obesity and depression simultaneously, would yield greater improvements in weight, mood, and CVD risk factors than treatments that targeted each disease individually.

Methods: Seventy-six participants with obesity and major depression were randomly assigned to (1) behavioral weight control (BWC), (2) cognitive behavioral therapy for depression (CBT-D), or (3) BWC combined with CBT-D.

A Longitudinal Study of Depressive Symptoms, Neuropsychological Functioning, and Medical Responsibility in Youth With Spina Bifida: Examining Direct and Mediating Pathways.

Objective: Given the increased risk for cognitive deficits and development of depressive symptoms in youth with spina bifida (SB), this study aimed to examine two pathways through which depressive symptoms and neuropsychological dysfunction may be associated with medical autonomy in this population: (1) depressive symptoms as predictors of medical autonomy as mediated by attention/executive functioning (the cognitive scarring model), and (2) attention/executive functioning as predictors of medical autonomy as mediated by depressive symptoms (the cognitive vulnerability model).

Methods: Participants were recruited as part of a larger, longitudinal study, and included 114 youth with SB (M age = 10.96 at Time 1), their parents, and teachers.

Parental Perceptions of Child Vulnerability in Families of Youth With Spina Bifida: the Role of Parental Distress and Parenting Stress.

Objective: This longitudinal study aimed to investigate parental distress and parenting stress in relation to parental perception of child vulnerability (PPCV) in youth with spina bifida (SB).

Methods: Parents of 140 youth with SB (ages 8-15 years at Time 1) were recruited as part of a longitudinal study; data were collected at two time points, spaced 2 years apart. Mothers and fathers completed questionnaires assessing levels of personal distress, parenting stress, and PPCV.