Bidirectional, longitudinal associations between chronic pain and family functioning in youth with spina bifida.

Introduction: Chronic pain does not reside within an individual. Pain is affected by and affects larger systems (e.g.

Stress and Coping in Youth With Spina Bifida: A Brief Longitudinal Study in a Summer Camp Setting.

Introduction: It is well established that youth with chronic conditions experience elevated levels of stress; the manner in which they respond to or cope with this stress is likely to impact both health and psychosocial outcomes. The current study examined stress and coping in youth and young adults with spina bifida (SB) using the response to stress questionnaire-SB version (RSQ-SB; Connor-Smith et al., 2000).

A Systematic Review of Benefit-Finding and Growth in Pediatric Medical Populations.

Objective: This review synthesizes the literature on benefit-finding and growth (BFG) among youth with medical illnesses and disabilities and their parents. Specifically, we summarized: (a) methods for assessing BFG; (b) personal characteristics, personal, and environmental resources, as well as positive outcomes, associated with BFG; (c) interventions that have enhanced BFG; and (d) the quality of the literature.

Methods: A medical research librarian conducted the search across PubMed, Scopus, PsycInfo, Google Scholar, and Cochrane Library.

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.

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.

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.

Cultural Considerations for Autonomy and Medical Adherence in a Young Palestinian American Muslim Female With Spina Bifida: A Longitudinal Case Study in a Research Context.

This case study examines the unique presentation of a young Palestinian-American Muslim female, who is a part of an ongoing longitudinal study examining family and peer relationships, psychological adjustment, and neuropsychological functioning in youth with spina bifida. Throughout ten years of data collection, Palestinian-Arab culture and Islamic faith have consistently emerged as important factors that can be considered when interpreting this participant's general level of autonomy, medical autonomy, medical adherence, and psychological adjustment. This case study examines important aspects of adaptive and independent functioning for youth with spina bifida and how this family's culture interacts with these different domains of functioning.

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.

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.

Identifying Key Symptoms Differentiating Myalgic Encephalomyelitis and Chronic Fatigue Syndrome from Multiple Sclerosis.

It is unclear what key symptoms differentiate Myalgic Encephalomyelitis (ME) and Chronic Fatigue syndrome (CFS) from Multiple Sclerosis (MS). The current study compared self-report symptom data of patients with ME or CFS with those with MS. The self-report data is from the DePaul Symptom Questionnaire, and participants were recruited to take the questionnaire online.

A Factor Analysis of PTSD with Latino Samples with Substance Use Disorders.

Objective: The Post - Traumatic Stress Disorder (PTSD) factor structure is not a generally agreed upon concept. It has remained controversial and its' efficacy regarding different trauma presentations is still in question. Therefore, it is imperative that we evaluate different conceptualizations of the PTSD factor structure.