Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions.

Research on the adjustment of families of children with spina bifida is reviewed, with a focus on delineating the impact of spina bifida on family functioning, the strengths and weaknesses of past research, and the needs for future evidence-based research on family interventions with this population. PsychINFO and MEDLINE literature searches were used to identify studies of family functioning and family-based interventions for children with spina bifida. Identified studies were empirically evaluated for the presence or absence of key methodological or analytic criteria. Thirty-two studies of family functioning were identified from 25 separate research groups; most studies displayed significant methodological limitations. No published studies of interventions to promote adaptive family functioning were identified. Methodologically sound, longitudinal, and theory-driven studies of family functioning are needed, as are randomized family-based intervention trials to promote adaptive functioning and better psychosocial outcomes in families of children with spina bifida. Specific recommendations for future work as well as clinical implications are noted.

Condition-related knowledge among children with spina bifida: longitudinal changes and predictors.

OBJECTIVE: To examine changes in three domains of condition-related knowledge among youth with spina bifida and to examine the utility of youth cognitive ability level and condition severity as predictors of knowledge change. METHODS: Seventy preadolescents with spina bifida completed a 12-item questionnaire assessing knowledge of spina bifida at three time points during middle childhood and early adolescence. Specific domains of knowledge assessed included (a) etiology of spina bifida, (b) functional status, and (c) shunt functioning (completed by participants with shunted hydrocephalus only). RESULTS: Findings revealed gains in accuracy of knowledge on 6 of 12 items; however, neither children's cognitive ability level nor condition severity predicted changes in knowledge over time. Most condition domains were characterized by low-to-moderate levels of knowledge across time. CONCLUSIONS: Although significant gains were evident in children's condition-related knowledge, at Time 3, many participants still failed to understand basic information about the etiology of their condition or major functional issues associated with spina bifida. Additional education about catheterization and shunt malfunction are two domains that may be of particular clinical significance.

Constructing a prospective model of psychosocial adaptation in young adolescents with spina bifida: an application of optimal data analysis.

OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This prospective longitudinal study includes 68 families of children with spina bifida and 68 comparison families of healthy children. Multimethod, multiinformant data were evaluated via optimal data analysis (ODA) and classification tree analysis (CTA) techniques. RESULTS: Factors best predicting psychosocial adaptation in early adolescence included (a) intrinsic motivation, (b) estimated verbal IQ, (c) behavioral conduct, (d) coping style, and (e) physical appearance. There were no significant group (spina bifida vs. able-bodied) effects. CONCLUSIONS: The final classification model correctly classified 77.8% of the total sample, indicating that this model had significant predictive capabilities. Results suggested that processes leading to psychosocial adaptation may be similar for youth with and without chronic illness.

Mediator and moderator effects in developmental and behavioral pediatric research.

The terms mediation and moderation are defined and clarified with particular emphasis on the role of mediational and moderational analyses in developmental and behavioral pediatric research. The article highlights the applicability of mediational and moderational analyses to longitudinal, intervention, and risk and protective factor research, and it provides basic information about how these analyses might be conducted. Also included is a discussion of various ways that both mediator and moderator variables can be incorporated into a single model. The article concludes with extended examples of both types of analyses using a longitudinal pediatric study for illustration. The article provides recommendations for applying mediational and moderational research in clinical practice.

A longitudinal study of pubertal timing, parent-child conflict, and cohesion in families of young adolescents with spina bifida.

OBJECTIVE: To study longitudinal associations between perceived pubertal timing and family conflict and cohesion during the transition to adolescence in 68 families of children with spina bifida and 68 matched families with able-bodied children. Children were 8 or 9 years old at Time 1 and 10 or 11 years old at Time 2. METHODS: Family conflict and cohesion were assessed with observational data and maternal, paternal, and child reports on questionnaires. Perceived pubertal timing was assessed with maternal report. RESULTS: Consistent with the literature on typically developing young adolescents, prospective longitudinal analyses revealed that early maturity was associated with higher levels of conflict and decreases in cohesion in families with able-bodied children. Contrary to these findings, perceived pubertal timing had less of an impact (or the opposite impact) in families of children with spina bifida. Findings were robust across respondents and methods of data collection. CONCLUSIONS: Findings based on multimethod and multisource data suggest that familial response to developmental change differs across context (spina bifida vs. able-bodied). Possible reasons for differential responses to the adolescent transition are reviewed. Services are likely to be enhanced if health professionals routinely discuss adolescent developmental issues with parents and youths during clinic visits.

Observed and perceived dyadic and systemic functioning in families of preadolescents with spina bifida.

OBJECTIVE: To examine dyadic and systemic family functioning across several domains (conflict, cohesion, and stress) in families of preadolescents with spina bifida in comparison to families of able-bodied preadolescents (8- and 9-year olds; n = 68 in each sample). METHODS: Mother-, father-, and child-reported questionnaire data and observational ratings of family behavior were employed. RESULTS: Findings revealed significant group and socioeconomic status (SES) differences, particularly for the observational family data. Compared to families of able-bodied children, families in the spina bifida sample were less cohesive and children from this sample were more passive during family interaction tasks. Additional analyses suggested that some of these significant associations between group status and family functioning were mediated by verbal IQ, indicating that a significant portion (42%-55%) of the overall group effect was due to variations in child cognitive functioning. Lower SES families demonstrated higher levels of observed mother-child conflict, less observed and perceived family cohesion, and more life events. Lower SES families from the spina bifida sample appear to be particularly at risk for lower levels of family cohesion. CONCLUSIONS: Findings for the spina bifida sample support a resilience-disruption view (Costigan, Floyd, Harter, & McClintock, 1997) of systemic functioning in families of children with pediatric conditions.

Collecting and managing multisource and multimethod data in studies of pediatric populations.

OBJECTIVE: To provide recommendations for the collection and management of multisource and multimethod data in studies of children and adolescents with pediatric conditions. METHODS: We discuss limitations of single-source and single-method data collection strategies. We review strategies for collecting and managing multisource and multimethod data, including coverage of the literature on level of agreement across sources, strengths and weaknesses of various source and method aggregation strategies, and methods of examining discrepancies between sources. RESULTS: Multisource and multimethod data collection strategies enable researchers to rule out alternative explanations for their findings and pose research questions that would probably not be testable with single-source, single-method data sets. CONCLUSIONS: We emphasize the utility of multisource and multimethod data and provide recommendations for future work.