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). Linear regressions examined the family stressors and child variables in association with maternal and paternal warmth and criticism, as coded from EE interviews. RESULTS: Higher levels of family stress were associated with paternal criticism (p = .03), while having non-Hispanic White children was associated with both maternal and paternal criticism (ps < .005). Having children younger in age (ps < .01) and without a shunt (ps < .01) was associated with higher warmth. CONCLUSIONS: Family stressors, absence of the negative impacts of systemic racism, shunt status, and age appear to be associated with the expression of EE in caregivers of a child with SB. Findings highlight multiple assessment considerations, including assessing EE when children are younger to engage caregivers with children with SB when they are more likely to be expressing more warmth. Pinpointing factors associated with caregiver EE in SB will help to better identify families at risk for high levels of criticism and also aid in the development of targeted prevention and intervention programs.

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. Change in marital satisfaction was examined across child age with components of the double ABCX model, as well as interactions between components, as predictors. RESULTS: Marital satisfaction was significantly higher in the present sample than in a normative sample of married couples. Although there were no significant changes in marital satisfaction for either parent as a function of child age, there was significant variability for the intercept and slope of maternal and paternal marital satisfaction within the sample. Family support predicted a higher intercept, and mental health symptoms predicted a lower intercept, for maternal and paternal marital satisfaction. More stressors and SB-related family stress predicted a lower intercept for paternal marital satisfaction. Family support and family stress attributed to SB moderated the relationship between child vulnerability and maternal marital satisfaction. Observed family cohesion and child psychosocial quality of life moderated the relationship between family stressors and paternal marital satisfaction. CONCLUSION: Findings demonstrate the usefulness of the double ABCX model for this population.

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. The degree to which there was a parenting alliance was assessed with observational data. Mother-father discrepancies were calculated at the item level. RESULTS: Findings revealed that greater father mental health symptoms, parenting stress, and child behavior problems were associated with "father high and mother low" discrepancies in PPCV. There were also lower scores on observed parenting alliance when there were higher rates of "father high and mother low" discrepancies in PPCV. CONCLUSIONS: For families of youth with SB, discrepancies in PPCV where fathers perceive high vulnerability and mothers perceive low vulnerability may be a "red flag" for the presence of other parental and child adjustment difficulties. Findings are discussed in terms of the Attribution Bias Context Model and underscore the importance of including fathers in research on families who have children with chronic health conditions.

"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. They also completed the COVID-19 Exposure and Family Impact Survey (CEFIS), which includes Exposure, Impact, and Distress subscales. Exploratory correlations and t-tests were used to examine potential associations between CEFIS scores and demographic, medical, and access characteristics. Qualitative data from the CEFIS were analyzed using thematic analysis. RESULTS: Scores on the Exposure, Impact, and Distress subscales demonstrated significant variability. Demographic associations with Exposure differed for those with higher Impact and Distress (e.g., White, non-Hispanic/Latino AYA reported higher rates of exposure [p = .001]; AYA who identified with a minoritized racial/ethnic identity reported greater impact [p ≤ .03]). Impacts to mental and behavioral health (n = 44), interference with medical care (n = 28), and interpersonal challenges (n = 27) were the most commonly occurring qualitative themes. CONCLUSIONS: The current findings implicate differential impacts to individuals with SB and their families based on demographic, medical, and systemic factors (e.g., minoritized status). Recommendations to support families with SB and other pediatric conditions are made.

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. Studies on BFG among children ages 0-18 with chronic illnesses and disabilities, or the parents of these youth were eligible for inclusion. Articles were uploaded into Covidence; all articles were screened by two reviewers, who then extracted data (e.g., study characteristics and findings related to BFG) independently and in duplicate for each eligible study. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO registration number: CRD42020189339). RESULTS: In total, 110 articles were included in this review. Generally, BFG capabilities were present across a range of pediatric health conditions and disabilities. Correlates of both youth and parent BFG are presented, including personal and environmental resources, coping resources, and positive outcomes. In addition, studies describing interventions aimed at enhancing BFG are discussed, and a quality assessment of the included studies is provided. CONCLUSIONS: Recommendations are provided regarding how to assess BFG and with whom to study BFG to diversify and extend our current literature.

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.-based and international interventions focused on the transition to adult health care in young adults with SB. FINDINGS: Individuals with SB must adhere to a complex multicomponent treatment regimen while at the same time managing a unique array of cognitive and psychosocial challenges and comorbidities that hinder self-management, medical adherence, and the transition to adult health care. Moreover, such youth endure multiple transitions to adult health care (e.g., in the areas of urology, orthopedics, neurosurgery, and primary care) that may unfold across different time frames. Finally, three transition-related constructs need to be assessed, namely, transition readiness, transition completion, and transition success. CONCLUSIONS: SB provides an important exemplar that highlights the complexities of conducting research on the transition to adult health care in youth with chronic health conditions. Many transition trajectories are possible, depending on the functioning level of the child and a host of other factors. Also, no single transition pathway is optimal for all patients with SB. CLINICAL RELEVANCE: The success of the process by which a child with SB transitions from pediatric to adult health care can have life-sustaining implications for the patient.

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. Parents preferred treatments that emphasize learning skills and strategies (82.5%) and include the parent in treatment at least some of the time (96.8%). Youth preferred that the therapist meet mostly with the youth alone (67.2%) but share at least some information with parents (78.1%). Youth (43.8%) tended to respond "don't know" to questions about their preferred therapeutic approach. Understanding parent and youth preferences, especially psychosocial treatment preferences, is needed to provide high-quality, patient-centered care.

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. Methods incorporate a self-report questionnaire adapted for this population and a qualitative interview aimed at understanding challenges and benefits associated with these women's experiences as members of a military family. Results revealed that more women than not endorsed meaningful changes that they have experienced as a result of their family's military service, despite a wide range of challenges and negative experiences. Four themes of benefits emerged from analyses: (a) financial, educational and career benefits; (b) cultivating strength; (c) friendships and community; and (d) pride. These findings illuminate the diverse ways in which women find meaning in their family's military service and upon replication and elaboration of these results, have clinical implications for the development of future prevention and intervention work with military families.

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. (2017) to evaluate the evidence base for norms, validity, and utility. All measures were rated adequate, good, excellent, or no evidence on 11 psychometric categories (e.g., internal consistency, treatment sensitivity). Overall, the ability of identified measures to accurately and reliably assess parenting stress was strong. Although the psychometrics vary across measures, the aggregated findings support the existence of a parenting stress construct and further confirm the relevance of parenting stress to family functioning, youth psychopathology, and mental health interventions.

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. RESULTS: Emerging adults with SB continue to lag behind across several important developmental milestones, including decision-making responsibility, involvement in social and romantic relationships, sexual intimacy, educational and vocational achievement, financial independence, and engagement in health-related behaviors. However, from a resilience perspective, these individuals also exhibited a number of strengths across the following areas: identity development, quality of social supports, and fewer problem behaviors (e.g., alcohol and other substance use). Most findings were still significant after controlling for a verbal intelligence quotient proxy. CONCLUSION: This study highlighted vulnerabilities and strengths of individuals with SB as they enter emerging adulthood, with considerable continuity across childhood, adolescence, and emerging adulthood.

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 (N = 329), ranging in age from 18 to 30 (M = 23.44 ± 2.93), completed the Benefit-Finding Scale (BFS), a 17-item self-report questionnaire, and reported on demographic and medical information related to their SB diagnosis. Participants endorsed a range of benefits associated with living with SB. The most frequently endorsed benefits were related to personal strengths, interpersonal relationships, and life philosophy. Younger age, majority race, higher education level, and employment were significantly associated with higher BFS scores. Young adults with SB report benefits associated with their chronic condition. Future research should examine these benefits in relation to psychosocial outcomes.

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. Nonparametric tests and exploratory hierarchical regressions were used to examine demographic and relational factors with physicians between those (1) who had and had not yet transitioned and (2) who did and did not return to pediatric care. RESULTS: Most of the sample reported having transitioned to adult health care, with three-quarters reporting that their primary physician is an adult primary care doctor. Individuals who had transitioned were more likely to be younger (p = 0.01) and to not have a shunt (p = 0.003). Beyond the effect of age and shunt status, relational factors with pediatric providers were not associated with transition (p > 0.1). After transition, over one-third reported returning to a pediatric provider. Those who did not return to pediatric care were more likely to have myelomeningocele, be a full-time student, and to not have a shunt (p < 0.001). Beyond the effect of age and shunt status, lower ratings of communication with adult providers were associated with a return to pediatric care (p = 0.04). CONCLUSION: The results highlight the need for additional research about barriers and facilitators to the transition to adult health care to target interventions that support this critical milestone in young adults with SB.

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). METHODS: Data were collected as part of a camp-based psychosocial intervention for children (ages 7-13), adolescents (ages 14-19), and young adults (ages 20-38) with SB. Participants completed the RSQ-SB as well as questionnaires assessing demographics and condition severity. Data were collected prior to camp (T1) and 1 month (T2) after camp ended. Self-report data were collected from adolescents and young adults; parents of children and adolescents reported on their child's stress and coping. Ratios of primary control coping, secondary control coping, disengagement coping, involuntary engagement, and involuntary disengagement coping were calculated. Descriptive statistics and t-tests were utilized to describe coping and stress responses and to determine potential change over time. T-tests were also used to compare youth and parent reported coping styles with those of youth with type 1 diabetes (T1D) and sickle cell disease (SCD). Associations between demographic/disease factors and coping styles were also examined. RESULTS: Parent and youth report indicated that youth with SB tend to use primary control coping. Youth with SB use more primary control coping and less disengagement coping compared to youth with SCD and youth with T1D. Few significant changes in coping were found between T1 and T2. IQ and socioeconomic status were significantly associated with coping styles. CONCLUSION: Youth with SB use more primary control coping compared to other coping methods and as compared to other pediatric populations. Future studies should examine mechanisms by which primary control coping is advantageous for youth with SB. Future interventions should be more focused on promoting adaptive coping behaviors and be tailored to developmental age and access to resources.

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. Gaps in the research and future directions are discussed.

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. Guidelines address clinical questions pertaining to the impact of having a child with spina bifida on family functioning, resilience and vulnerability factors, parenting behaviors that may facilitate adaptive child outcomes, and appropriate interventions or approaches to promote family functioning. Gaps in the research and future directions are discussed.

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. The present study examines the effects of a family based reintegration program aimed at enhancing reflective functioning in recently deployed service members and their home-front partners on relationship satisfaction. Results reveal that most dyads report being satisfied in their relationship at baseline. However, greater couple distress was related to more psychological distress in both partners. For spouses, intervention had a positive, significant effect on relationship satisfaction. Variations in relative risk for couple distress among service members and their spouses highlight the need to assess both partners to clarify risk factors and modifiable targets of intervention. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

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. Random effects meta-analytic models estimated omnibus associations between parental combat exposure/PTSD and pooled Family Difficulties, as well as individual relationships between parental combat exposure and PTSD/PTSS and parenting, family adjustment, and offspring outcomes. Small-to-moderate effect sizes were observed in the omnibus meta-analysis examining relationships between parental PTSD/PTSS and pooled Family Difficulties, and in the meta-analysis examining relationships between parental PTSD/PTSS and parenting problems, between parental PTSD/PTSS and poor family functioning, and between parental PTSD/PTSS and offspring problems. Associations between parental combat exposure and pooled Family Difficulties, as well as between parental combat exposure and parenting problems were smaller in magnitude. PTSD/PTSS among military-serving parents is associated with increased problems in the family environment, including parenting problems, family maladjustment, and offspring problems, whereas combat exposure alone is not as strongly associated with such family difficulties. Moderator analyses are presented and discussed as well. When military-serving parents show psychological symptoms, professionals should consider allocating resources to target broader family issues.