Cappelli M, McGarth PJ, Daniels T, Manion I, Schillinger J. (1994) Marital quality of parents of children with spina bifida: a case-comparison study. J Dev Behav Pediatr. 1994 Oct;15(5):320-6.
The impact of childhood chronic illness on parents' marital quality has received limited attention. Most studies have relied solely on mothers' reports and have not examined differences between mothers and fathers. Using a case-control design, this study compared the marital quality within and between dyads of 46 couples with children matched on the age and children matched on the age and sex of the child. During a home visit, parents completed both self-report measures and a communication observational task. Mothers' and fathers' reports of marital quality did not differ between the two groups. Also, no significant differences were found on other marital and psychosocial measures. The most interesting correlations were observed for fathers of children with spinal bifida whose marital quality was associated with parenting stress (r = -.51), depression (r = -.34), and role strain (r = -.34). Overall, the results of this study contribute to the growing body of literature demonstrating that parents of children with a chronic condition are at no greater risk for psychosocial dysfunction, including marital distress, than parents of healthy children. However, to generalize the results, additional research on marital quality with other chronic conditions is required.
PMID: 7868699
Monday, January 9, 2012
Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions
Holmbeck GN, Greenley RN, Coakley RM, Greco J, Hagstrom J. (2006) Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions.
J Dev Behav Pediatr. 2006 Jun;27(3):249-77.
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.
PMID: 16775524
J Dev Behav Pediatr. 2006 Jun;27(3):249-77.
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.
PMID: 16775524
Psychosocial and family functioning in spina bifida.
Holmbeck GN, Devine KA. (2010) Psychosocial and family functioning in spina bifida. Dev Disabil Res Rev. 2010;16(1):40-6.
A developmentally oriented bio-neuropsychosocial model is introduced to explain the variation in family functioning and psychosocial adjustment in youth and young adults with spina bifida (SB). Research on the family functioning and psychosocial adjustment of individuals with SB is reviewed. The findings of past research on families of youth with SB support a resilience-disruption view of family functioning. That is, the presence of a child with SB disrupts normative family functioning but many families adapt to such disruption and exhibit considerable resilience in the face of adversity. Parents of youth with SB, and particularly those from lower socio-economic status (SES) homes, are at-risk for psychosocial difficulties. Individuals with SB are at-risk for developing internalizing symptoms, attention problems, educational difficulties, social maladjustment, and delays in the development of independent functioning. Emerging adults are often delayed in achieving milestones related to this stage of development (e.g., vocational and educational achievements). Methodologically sound, longitudinal, and theory-driven studies of family and psychosocial functioning are needed, as are randomized family-based intervention trials, to promote adaptive functioning and better psychosocial outcomes in families of individuals with SB.
PMID:20419770
A developmentally oriented bio-neuropsychosocial model is introduced to explain the variation in family functioning and psychosocial adjustment in youth and young adults with spina bifida (SB). Research on the family functioning and psychosocial adjustment of individuals with SB is reviewed. The findings of past research on families of youth with SB support a resilience-disruption view of family functioning. That is, the presence of a child with SB disrupts normative family functioning but many families adapt to such disruption and exhibit considerable resilience in the face of adversity. Parents of youth with SB, and particularly those from lower socio-economic status (SES) homes, are at-risk for psychosocial difficulties. Individuals with SB are at-risk for developing internalizing symptoms, attention problems, educational difficulties, social maladjustment, and delays in the development of independent functioning. Emerging adults are often delayed in achieving milestones related to this stage of development (e.g., vocational and educational achievements). Methodologically sound, longitudinal, and theory-driven studies of family and psychosocial functioning are needed, as are randomized family-based intervention trials, to promote adaptive functioning and better psychosocial outcomes in families of individuals with SB.
PMID:20419770
Executive functioning and psychological adjustment in children and youth with spina bifida.
Kelly NC, Ammerman RT, Rausch JR, Ris MD, Yeates KO, Oppenheimer SG, Enrile BG. (2011) Executive functioning and psychological adjustment in children and youth with spina bifida. Child Neuropsychol. 2011 Oct 3.
Children and adolescents with spina bifida are at risk for poor neuropsychological functioning and psychological outcomes. The relationship between executive functioning and psychological adjustment is an area worthy of investigation in this population. The current study assessed executive functioning and psychological outcomes in a group of children and adolescents with spina bifida (SBM) (n = 51) and nondisabled controls (n = 45). A mediation model was hypothesized, such that Metacognition, as measured by the Behavior Rating Inventory of Executive Function (BRIEF), mediated the relationship between group status (spina bifida versus nondisabled controls) and psychological outcomes. Results indicated that metacognitive skills fully explained the relationship between group and internalizing and depressive symptoms as reported by mothers. In particular, specific components of the BRIEF Metacognition composite were most responsible for this relationship, including Initiate, Working Memory, and Plan/Organize. The study limitations include its cross-sectional nature that precludes drawing conclusions about causality. The results have implications for treatment interventions for children and adolescents with spina bifida and typically developing individuals.
PMID: 21961993
Children and adolescents with spina bifida are at risk for poor neuropsychological functioning and psychological outcomes. The relationship between executive functioning and psychological adjustment is an area worthy of investigation in this population. The current study assessed executive functioning and psychological outcomes in a group of children and adolescents with spina bifida (SBM) (n = 51) and nondisabled controls (n = 45). A mediation model was hypothesized, such that Metacognition, as measured by the Behavior Rating Inventory of Executive Function (BRIEF), mediated the relationship between group status (spina bifida versus nondisabled controls) and psychological outcomes. Results indicated that metacognitive skills fully explained the relationship between group and internalizing and depressive symptoms as reported by mothers. In particular, specific components of the BRIEF Metacognition composite were most responsible for this relationship, including Initiate, Working Memory, and Plan/Organize. The study limitations include its cross-sectional nature that precludes drawing conclusions about causality. The results have implications for treatment interventions for children and adolescents with spina bifida and typically developing individuals.
PMID: 21961993
Expectation of life and unexpected death in open spina bifida: a 40-year complete, non-selective, longitudinal cohort study
Oakeshott P, Hunt GM, Poulton A, Reid F. (2010) Expectation of life and unexpected death in open spina bifida: a 40-year complete, non-selective, longitudinal cohort study Dev Med Child Neurol. 2010 Aug;52(8):749-53.
AIM:
The aim of our study was to investigate survival and causes of death in a complete cohort of open spina bifida at the mean age of 40 years.
METHOD:
We conducted a community-based, prospective study of 117 consecutive infants (50 males, 67 females) with open spina bifida whose backs were closed non-selectively within 48 hours of birth between 1963 and 1971 at Addenbrooke's Hospital, Cambridge, UK. Of those who survived to age 1 year, 89% (82 out of 92) had a cerebrospinal fluid shunt. In 2007, all survivors were surveyed by postal questionnaire backed up by telephone interview. Details of deaths were obtained from the Office for National Statistics, medical records, and autopsy reports, and Kaplan-Meier survival curves were constructed.
RESULTS:
One in three of the cohort (40/117) died before the age of 5 years. A further 26% (31/117) died during the next 35 years, over 10 times the national average. Half the deaths (16/31) after the age of 5 were sudden and unexpected. All occurred in the community and were followed by a coroner's autopsy. The most frequent causes of these unexpected deaths were epilepsy, pulmonary embolus, acute hydrocephalus, and acute renal sepsis. The prognosis for survival was strikingly poor in those with the most extensive neurological deficit. Only 17% (7/42) of those born with a high sensory level (above T11) survived to the mean age of 40 years, compared with 61% (23/38) of those with a low sensory level (below L3; p=0.001).
INTERPRETATION:
Doctors and care planners need to be aware that, contrary to previous suggestions, there is continuing high mortality throughout adult life in individuals with open spina bifida, and many deaths are unexpected.
AIM:
The aim of our study was to investigate survival and causes of death in a complete cohort of open spina bifida at the mean age of 40 years.
METHOD:
We conducted a community-based, prospective study of 117 consecutive infants (50 males, 67 females) with open spina bifida whose backs were closed non-selectively within 48 hours of birth between 1963 and 1971 at Addenbrooke's Hospital, Cambridge, UK. Of those who survived to age 1 year, 89% (82 out of 92) had a cerebrospinal fluid shunt. In 2007, all survivors were surveyed by postal questionnaire backed up by telephone interview. Details of deaths were obtained from the Office for National Statistics, medical records, and autopsy reports, and Kaplan-Meier survival curves were constructed.
RESULTS:
One in three of the cohort (40/117) died before the age of 5 years. A further 26% (31/117) died during the next 35 years, over 10 times the national average. Half the deaths (16/31) after the age of 5 were sudden and unexpected. All occurred in the community and were followed by a coroner's autopsy. The most frequent causes of these unexpected deaths were epilepsy, pulmonary embolus, acute hydrocephalus, and acute renal sepsis. The prognosis for survival was strikingly poor in those with the most extensive neurological deficit. Only 17% (7/42) of those born with a high sensory level (above T11) survived to the mean age of 40 years, compared with 61% (23/38) of those with a low sensory level (below L3; p=0.001).
INTERPRETATION:
Doctors and care planners need to be aware that, contrary to previous suggestions, there is continuing high mortality throughout adult life in individuals with open spina bifida, and many deaths are unexpected.
The Prevalence of Hypertension in Children with Spina Bifida
Mazur L, Lacy B, Wilsford L. (2011) The Prevalence of Hypertension in Children with Spina Bifida Acta Paediatr. 2011 Aug;100(8):e80-3.
AIM:
To determine whether children with spina bifida (SB) have a higher prevalence of hypertension (HTN) than population-based controls.
METHODS:
Charts of all patients (n=123) seen in the Spina Bifida Clinic at Shriners Hospital in Houston, Texas, were reviewed for age, gender, ethnicity, type and level of neural tube defect, height, weight and blood pressure (BP). HTN was defined as a systolic blood pressure or diastolic blood pressure≥95th percentile for age, gender and height on ≥3 occasions. Data from the National Health and Nutrition Examination Survey and from a Houston-based study were used for comparison.
RESULTS:
Fifty-one (41.5%) patients were hypertensive. This was significantly higher than the 3% prevalence in the national controls, p<0.001 and the 4.5% prevalence in the Houston controls, p<0.001. Maximum body mass index increased the risk for HTN [odds ratio, 1.018; 95% confidence interval (1.005, 1.031); and p=0.005].
CONCLUSION:
Children with SB have a significantly higher prevalence of HTN than children in the general population. Age-, gender-, and height-based norms are important for the early identification and treatment of HTN in children.
PMID: 21342248
AIM:
To determine whether children with spina bifida (SB) have a higher prevalence of hypertension (HTN) than population-based controls.
METHODS:
Charts of all patients (n=123) seen in the Spina Bifida Clinic at Shriners Hospital in Houston, Texas, were reviewed for age, gender, ethnicity, type and level of neural tube defect, height, weight and blood pressure (BP). HTN was defined as a systolic blood pressure or diastolic blood pressure≥95th percentile for age, gender and height on ≥3 occasions. Data from the National Health and Nutrition Examination Survey and from a Houston-based study were used for comparison.
RESULTS:
Fifty-one (41.5%) patients were hypertensive. This was significantly higher than the 3% prevalence in the national controls, p<0.001 and the 4.5% prevalence in the Houston controls, p<0.001. Maximum body mass index increased the risk for HTN [odds ratio, 1.018; 95% confidence interval (1.005, 1.031); and p=0.005].
CONCLUSION:
Children with SB have a significantly higher prevalence of HTN than children in the general population. Age-, gender-, and height-based norms are important for the early identification and treatment of HTN in children.
PMID: 21342248
Neuropsychological Functioning in Early Hydrocephalus: Review From a Developmental Perspective
Erickson K, Baron IS, Fantie BD. (2001) Neuropsychological Functioning in Early Hydrocephalus: Review From a Developmental Perspective Child Neuropsychol. 2001 Dec;7(4):199-229.
Children with hydrocephalus have deficits in several neuropsychological domains. The most notable are motor, visuoperceptual, and visuomotor function. These deficits are multiply determined and depend on the etiology and severity of the hydrocephalus to a large extent. Corpus callosum abnormalities resulting from stretching of callosal fibers and other cortical white matter tracts are implicated as contributory to these deficits. Enlarged ventricles and associated compression of posterior cortical areas also correlate with cognitive impairment. Distinguishing which cognitive domain negatively impacts on the child's functioning and which domains influence behavior in isolation or in combination has been the subject of numerous studies. Developmentally, we know little about the emergence of neuropsychological functioning in children with hydrocephalus. Study of the effects of hydrocephalus at different stages of development is useful to clinicians and researchers interested in the impact of diffuse neurophysiological damage on cognition in the developing brain. The medical and neuropsychological literature have begun to inform about these effects. The core deficits in hydrocephalus have yet to be explicated and a focus on investigations that answer these questions is required. This review summarizes the current knowledge about neurocognitive sequelae of hydrocephalus.
PMID: 16210211
Children with hydrocephalus have deficits in several neuropsychological domains. The most notable are motor, visuoperceptual, and visuomotor function. These deficits are multiply determined and depend on the etiology and severity of the hydrocephalus to a large extent. Corpus callosum abnormalities resulting from stretching of callosal fibers and other cortical white matter tracts are implicated as contributory to these deficits. Enlarged ventricles and associated compression of posterior cortical areas also correlate with cognitive impairment. Distinguishing which cognitive domain negatively impacts on the child's functioning and which domains influence behavior in isolation or in combination has been the subject of numerous studies. Developmentally, we know little about the emergence of neuropsychological functioning in children with hydrocephalus. Study of the effects of hydrocephalus at different stages of development is useful to clinicians and researchers interested in the impact of diffuse neurophysiological damage on cognition in the developing brain. The medical and neuropsychological literature have begun to inform about these effects. The core deficits in hydrocephalus have yet to be explicated and a focus on investigations that answer these questions is required. This review summarizes the current knowledge about neurocognitive sequelae of hydrocephalus.
PMID: 16210211
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