Parents' school-related concerns and perceived strengths in youth with spina bifida.

Background: Although the academic difficulties of children with spina bifida (SB) are well-documented, there is limited literature on parents' views of their children's school experiences and school-related supportive services. Thus, the current study examined parents' school-related concerns, as well as perceived areas of strength, among children with SB.

Methods: Using a mixed-methods approach, 30 families (29 mothers and 19 fathers) of children with SB (ages 8-15 years) completed questionnaires and interviews.

Social Skills and Medical Responsibility Across Development in Youth With Spina Bifida.

Objective: To examine the predictive role of social skills in youth with spina bifida (SB) on growth in medical responsibility across development.

Methods: As part of a larger, longitudinal study, 140 youth with SB were assessed across four time points (ages 8-22 across time points). Mixed-effects models were investigated for change with: (a) no predictors (i.

Longitudinal Associations Between Pain and Psychosocial Adjustment in Youth With Spina Bifida.

Objective: This study examined: (a) the nature and prevalence of pain in youth with spina bifida (SB) (b) common coping responses to pain, and (c) longitudinal, bi-directional associations between internalizing symptoms and pain characteristics.

Methods: Data were collected from youth (N = 140, 53.6% female, ages 8-15 at Time 1) and their parents and teachers at two time points spaced 2 years apart.

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.

Exploring an Existing Weight Management App for Use With Adolescents and Young Adults With Spina Bifida: Usability Study.

Background: Adolescents and young adults with spina bifida (AYA-SBs) have unique user needs, given their variable and complex symptom profile. Owing to multiple barriers to prevention and intervention treatments for secondary conditions (eg, obesity), AYA-SBs may benefit from the use of behavioral intervention technologies (BITs). However, as BITs are often designed and tested with typically developing individuals, it is unclear if existing BITs may be usable for AYA-SBs.

Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents.

Purpose: This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions.

Methods: Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.

An Interactive Virtual Reality Tour for Adolescents Receiving Proton Radiation Therapy: Proof-of-Concept Study.

Background: Child life therapists provide patient education for children undergoing radiation therapy to assist in coping with and understanding their treatment.

Objective: This proof-of-concept study aimed to determine the feasibility of incorporating a 360-degree video tour via a virtual reality system for children scheduled to receive radiation therapy. The secondary objective was to qualitatively describe each subject's virtual reality experience.

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.

The Migration of Caudally Threaded Thoracic Epidural Catheters in Neonates and Infants.

Background: The migration of pediatric thoracic epidural catheters via a thoracic insertion site has been described. We assessed the migration of caudally threaded thoracic epidural catheters in neonates and infants at our institution.

Methods: The anesthesia records and diagnostic imaging studies of neonates and infants who had caudal epidural catheters placed during a 26-month period at our hospital were analyzed.

The timing and prevalence of intraoperative hypotension in infants undergoing laparoscopic pyloromyotomy at a tertiary pediatric hospital.

Background: Intraoperative hypotension may be associated with adverse outcomes in children undergoing surgery. Infants and neonates under 6 months of age have less autoregulatory cerebral reserve than older infants, yet little information exists regarding when and how often intraoperative hypotension occurs in infants.

Aims: To better understand the epidemiology of intraoperative hypotension in infants, we aimed to determine the prevalence of intraoperative hypotension in a generally uniform population of infants undergoing laparoscopic pyloromyotomy.

A Technical Evaluation of Wireless Connectivity from Patient Monitors to an Anesthesia Information Management System During Intensive Care Unit Surgery.

Surgical procedures performed at the bedside in the neonatal intensive care unit (NICU) at The Children's Hospital of Philadelphia were documented using paper anesthesia records in contrast to the operating rooms, where an anesthesia information management system (AIMS) was used for all cases. This was largely because of logistical problems related to connecting cables between the bedside monitors and our portable AIMS workstations. We implemented an AIMS for documentation in the NICU using wireless adapters to transmit data from bedside monitoring equipment to a portable AIMS workstation.