Perceived barriers transitioning to adult healthcare among adults with spina bifida.

Background: This study examined perceived barriers to transitioning to adult healthcare among a sample of young adults with spina bifida (SB) and the degree to which these perceived barriers have impeded the transition process, and assessed relationships between these self-reported barriers and demographic and medical variables.

Methods: In a large national survey conducted in 2019, young adults with SB between the ages of 18 and 30 years old ( = 326) completed a questionnaire on perceived barriers to transition, which yielded scores representing the proportion of barriers experienced and the degree of interference of these barriers. Participants included both individuals who reported that they already transitioned to adult healthcare and those who did not.

Inclusive measure development: amplifying the voices of adolescents and young adults with spina bifida in a new measure of benefit-finding and growth.

Objective: Benefit-finding and growth is an important process across a range of medical populations. However, it has been understudied in the context of lifelong chronic conditions, such as spina bifida (SB). This study aimed to develop a new measure of benefit-finding and growth for youth with SB, confirm its factor structure, and examine its psychometric properties.

The Relation between Parental Locus of Control and Willingness to Implement Parent Management Training Strategies.

In child disruptive behavior treatment, successful parent management training (PMT) outcomes are dependent on parents' use of strategies outside of sessions. This study aimed to identify the influence of parental locus of control (PLOC) on a key treatment acceptability variable: parents' willingness to implement PMT strategies. We sought to investigate this relationship for individual strategies within PMT, given the composite nature of the intervention.

Caregiver Expressed Emotion in Families of Youth With Spina Bifida: Demographic, Medical, and Family Correlates.

Objective: Caregiver expressed emotion (EE), an interview-based measure of emotional valence within an interpersonal relationship, is associated with psychosocial outcomes across multiple conditions. Guided by a model implicating a bidirectional role of "Chronic Family Stress" in the unfolding of EE in family environments, the current study examined demographic, medical, and family-level variables in association with EE in caregivers of children with spina bifida (SB).

Methods: Data were combined from 2 distinct studies of families with a child with SB, resulting in a sample of 174 (ages 8-17).

Trajectories of Marital Satisfaction among Parents of Youth with Spina Bifida.

Objective: This study examined marital satisfaction among parents of youth with spina bifida (SB) over an 8-year period and investigated the usefulness of the double ABCX model for understanding factors that predict change in marital satisfaction across child age.

Methods: Data from five time points of a longitudinal investigation of psychosocial outcomes in youth with SB were included. Mothers and fathers of children with SB (aged 8-17) reported on marital satisfaction and components of the double ABCX model.

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.

The Transition from Pediatric to Adult Health Care in Young Adults with Spina Bifida: Demographic and Physician-Related Correlates.

Objective: This study examined the transition to adult health care for individuals with spina bifida (SB) and explored demographic and relational associations with transition status.

Method: Young adults with SB (18-30; n = 326) were recruited to complete an anonymous, online survey. Frequencies of reported experiences, behaviors, and satisfaction with the transition to adult health care were examined.

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.

"We Are Anxious Every Day": COVID-19 Impacts on Youth with Spina Bifida.

Objective: This study examined the impact of the COVID-19 pandemic on a national sample of adolescents and young adults (AYA) with spina bifida (SB) and parents of youth with SB.

Methods: AYA with SB (15-25; n = 298) and parents of children with SB (n = 200) were recruited to complete an anonymous, online survey in English or Spanish. Participants provided information about demographic and condition characteristics, as well as their technology access and use for behavioral health care.

Psychosocial Adjustment in Emerging Adults With and Without Spina Bifida: A 14-Year Follow-up Study.

Objective: A 14-year follow-up of youth with spina bifida (SB), as compared to a matched comparison sample without a chronic health condition, focused on psychosocial adjustment during emerging adulthood (ages 22-23).

Methods: The initial cohort at time 1 consisted of 68 families with an 8-year-old or 9-year-old child with SB and a matched comparison sample of 68 typically developing children and their families. At the final assessment (time 7), participants included 56 emerging adults with SB (82% of those who participated at time 1) and 62 comparison youth (91% of those who participated at time 1) who completed a set of self-report measures.

Benefit-finding among young adults with spina bifida.

The purpose of the current study was to examine benefit-finding in a sample of young adults with SB and assess relationships between demographic and medical variables and benefit-finding. Young adults with SB ( = 329), ranging in age from 18 to 30 ( = 23.44 ± 2.

The Transition to Adult Health Care in Youth With Spina Bifida: Theory, Measurement, and Interventions.

Purpose: This article focuses on the transition to adult health care in youth with spina bifida (SB) from the perspective of theory, measurement, and interventions.

Methods: The purpose of this article is to discuss (a) a theory of linkages between the transfer of medical responsibility from parent to child and the transition from pediatric to adult health care, as mediated by transition readiness; (b) measurement issues in the study of self-management and the transition to adult health care; and (c) U.S.

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.

Family functioning guidelines for the care of people with spina bifida.

Research supports a resilience-disruption model of family functioning in families with a child with spina bifida. Guidelines are warranted to both minimize disruption to the family system and maximize family resilience and adaptation to multiple spina bifida-related and normative stressors. This article discusses the spina bifida family functioning guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida, and reviews evidence-based directions with the intention of helping individuals with spina bifida achieve optimal mental health throughout their lifespan.

Mental health guidelines for the care of people with spina bifida.

Spina bifida's (SB) impact on cognitive, physical, and psychosocial functioning places individuals at risk for mental health concerns. This article discusses the SB Mental Health Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida and reviews evidence-based directions with the intention of helping individuals with SB achieve optimal mental health throughout the lifespan. Guidelines address clinical questions pertaining to the psychosocial impact of SB on mental health and adaptation, domains of mental health that are affected in individuals with SB, areas of resilience, common maladaptive behaviors that may impact people with SB, and resources or practices that are helpful in mitigating mental health issues in this population.

Finding meaning in times of family stress: A mixed methods study of benefits and challenges amongst home-front parents in military families.

Family stress theory explains how demands placed on the family system interact with capabilities to influence family adaptation. One capability that some military families may use naturalistically is that of benefit-finding, the recognition of value and benefit after a stressful or traumatic experience. In this mixed methods study, authors explore the perception of benefits associated with military service amongst 26 home-front mothers.

Parent and Youth Preferences in the Treatment of Youth Depression.

Patient-centered care requires providing care that is responsive to patient preferences, needs, and values, yet data on parent and youth treatment preferences remains sparse. The present study (1) identifies variations in parent and youth preferences for depression treatment, and (2) explores relationships between parent and youth demographics and psychosocial functioning, and the preferences that parents and youth endorse. Participants were 64 youth and 63 parents awaiting randomization in a clinical trial evaluating psychosocial youth depression treatments.

Evidence-Base Update for Parenting Stress Measures in Clinical Samples.

Parenting stress is relevant to the development, maintenance, and amelioration of youth mental, emotional, and behavioral health issues. This Evidence Base Update evaluates the empirical literature on the measurement of parenting stress to guide future research and inform clinical decision-making. After a comprehensive literature search, we identified eight well-studied measures of parenting stress, to which we applied the criteria put forth by Hunsley and Mash (2008) and extended by Youngstrom et al.

The effect of a parenting intervention on relationship quality of recently deployed military service members and their partners.

Couples form the foundation of military families. However, on average, couples become significantly less satisfied with their relationships and marriages across the deployment cycle. Reduced satisfaction places partners at risk for psychological distress and family problems.

Combat Experience and Posttraumatic Stress Symptoms among Military-Serving Parents: a Meta-Analytic Examination of Associated Offspring and Family Outcomes.

In this meta-analysis, we review findings on the relationships between parental combat exposure and PTSD/PTSS in military-serving families and (1) parenting problems, (2) family maladjustment, and (3) offspring problems. We systematically searched for studies in PsycInfo, PsychArticles, Psychology and Behavior Sciences Collection, Published International Literature on Traumatic Stress (PILOTS), and PubMed/Medline as well as conducted manual searches. Search procedures identified 22 eligible studies, including 20 studies examining relationships between parental PTSD/PTSS and parenting, family, and/or offspring outcomes and 8 studies examining relationships between parental combat exposure and parenting, family, and/or offspring outcomes.