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Long-term Family Outcomes for Children With Very Low Birth Weights
H. Gerry Taylor, PhD;
Nancy Klein, PhD;
Nori M. Minich, BS;
Maureen Hack, MB, ChB
Arch Pediatr Adolesc Med. 2001;155:155-161.
ABSTRACT
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Objective To examine long-term outcomes in families of children with very low
birth weights (<1500 g) in relation to the extent of low birth weight and
neonatal medical risk.
Design Concurrent/cohort prospective study.
Setting Regional follow-up program.
Participants Families of 60 children of school age with birth weights less than 750
g, 55 with birth weights between 750 and 1499 g, and 49 normal birth weight
full-term controls.
Main Outcome Measures Parent ratings of psychological distress, family function, and child-related
stress.
Results Families with children with birth weights less than 750 g experienced
greater stress than did families of controls (born at full term), and families
who were sociodemographically advantaged experienced greater stress than did
those who were disadvantaged. Higher neonatal medical risk also predicted
a more negative impact on the family, but only in advantaged families. Regression
analyses suggested that adverse family outcomes were mediated by ongoing problems
in child functioning.
Conclusions Families of children with birth weights less than 750 g experience more
long-term adversity than families of full-term children. Family sequelae are
also present for children with very low birth weight at high neonatal medical
risk. Ongoing child health and behavior problems may be the major source of
these sequelae, and sociodemographic status is an important consideration
in identifying family adversity. Although many families appear unaffected,
results support the need to monitor family outcomes and develop interventions
for both the child and family.
INTRODUCTION
PREVIOUS research has demonstrated that families of infants and young
children with very low birth weights (VLBW) (<1500 g) experience more distress
and burden than do families of children born at full term at a normal weight.
We know little, however, about the later adjustment of families of children
with VLBW. Our study is among the first to document that family sequelae extend
into the school-age years and to investigate predictors of these sequelae.
The findings also clarify sources of family adversity and indicate a need
for family intervention.
The birth of an infant with VLBW (<1500 g) is a stressful event for
many families, especially in cases involving extreme prematurity, neonatal
medical complications, and long hospitalizations.1, 2, 3, 4, 5
Parents of infants and young children with VLBW report more symptoms of depression
and experience greater child-related stress than do mothers of full-term children.6, 7, 8, 9 Early
parenting behaviors and attachment of the infant to the caretaker are also
adversely affected.10, 11
The negative impact of children with VLBW on their families, although
diminishing after the neonatal period, persists into early childhood.1, 8, 9 However, we are aware
of no published reports of family outcomes for older children with VLBW. It
is unclear if family sequelae are intransigent or dissipate as the child grows
older. Even if family problems related to early separation from the child
or to stress associated with neonatal complications resolve with time, children
with VLBW are at risk for a variety of problems in health, behavior, and development.12, 13, 14 Research on children
with VLBW and on children who have other chronic conditions indicates that
child health and developmental problems have adverse effects on families.1, 5, 10, 15, 16, 17
Because these problems continue to be present in children with VLBW during
the school-age years,18 one would expect persistent
family sequelae.
The primary goal of this study was to test the hypothesis that family
outcomes would be more negative for children of school age with VLBW than
for those born at full term at a normal weight. In view of the greater health,
developmental, and family morbidity associated with more extreme degrees of
preterm birth and neonatal medical risk, we anticipated that family sequelae
would be more marked for children with birth weights less than 750 g than
for those with birth weights between 750 and 1499 g.6, 8, 13, 14
We also expected more adverse outcomes for families with children who have
VLBW and a higher neonatal medical risk.
Based on previous research, we anticipated that outcomes would be poorer
in families at greater social disadvantage.6, 16, 17
We also examined the possibility that the influences of low birth weight or
neonatal medical risk on family outcomes differed according to sociodemographic
status. If families at greater social disadvantage are less able to cope with
parenting demands and child needs than families from more advantaged backgrounds,19, 20 negative effects of children with
VLBW on their families may be heightened by social disadvantage. Alternatively,
stresses related to raising a child with VLBW may have a smaller relative
impact on families facing other hardships than on more advantaged families.
Evidence for both types of moderating effects can be found in research on
the relationship between family social status and child outcomes.13, 21, 22
Associations between birth weight or neonatal medical risk and family
outcomes may be mediated by concurrent problems in the child's functional
health, as broadly defined by the presence of a neurosensory disorder or a
problem in child behavior or adaptive functioning.1, 5, 6
PATIENTS AND METHODS
POPULATION
The sample consisted of children and parents participating in an ongoing
longitudinal study of the consequences of birth weights less than 750 g in
older children.23 The participants were first
recruited when the children had a mean age of 7 years. The sample included
68 children with birth weights less than 750 g, 65 with birth weights between
750 and 1499 g, and 61 controls born at full term. The group that had birth
weights less than 750 g constituted 93% of the 73 surviving children born
in this weight range who were treated at neonatal intensive care units in
region V of Ohio between July 1, 1982, and December 31, 1986.
The 2 comparison groups were formed by selecting matches for each child
with a birth weight less than 750 g. The birth weight match in the 750 to
1499 g group was the next-born child in this birth weight range delivered
at the same hospital and of the same sex and race. The full-term match was
a randomly selected classmate of the same age within 3 months, and of the
same sex and race. Failure to recruit comparison children for some of the
children with birth weights less than 750 g was the result of refusals, difficulties
in matching out-of-town participants, and missed appointments. Comparison
of the 3 original groups did not reveal differences in age, sex, or sociodemographic
factors.
The family assessments considered in this report were obtained at a
second assessment conducted when the children had a mean age of 11 years.
We were unable to follow up with 30 of the original families due to moves
out of the region (4 cases), inability to locate families (7 cases), and disinterest
or lack of follow-through by families (19 cases). Maternal education and children's
cognitive ability were lower for those who dropped out of the study than for
those who remained in the study, but these 2 groups of children did not differ
in gestational age, neonatal complications, or rates of neurosensory disorders.
Table 1 presents neonatal
and sociodemographic characteristics for the 3 groups of children (mean age,
11 years). Neonatal medical status was assessed in terms of rates of individual
complications and of high overall neonatal risk, as defined by a score greater
than 3 on the Neonatal Risk Index.13 Measures
of sociodemographic status included the Hollingshead Four Factor Index24 and the Social Disadvantage Index (SDI).23 The SDI has been previously validated as a predictor
of child outcomes13, 22, 23
and is defined as a composite of maternal education (<high school = 1;  high
school = 0), maternal marital status (unmarried = 1; married = 0), and minority
status (minority = 1; nonminority = 0). For this study, families were classified
on the basis of the SDI as advantaged (SDI = 0 or 1) or disadvantaged (SDI
>1).
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Table 1. Sociodemographic and Neonatal Characteristics of the Sample*
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As expected, the less than 750 g group had a lower mean birth weight
and gestational age, longer hospitalizations, and higher rates of individual
neonatal complications and overall neonatal medical risk than the 750 to 1499
g group. Proportionally, more children in the less than 750 g group had high
neonatal medical risk than those in the 750 to 1499 g group. The groups did
not differ in age, sex, race, or the Hollingshead Four Factor Index, but did
differ in maternal educational status and in the proportion of disadvantaged
families.
Fifteen children had neurosensory disorders, including cerebral palsy
or a visual or sensorineural hearing impairment. Visual impairment was defined
as corrected acuity in at least 1 eye of less than 20/100. These disorders
were found in 11 children from the less than 750 g group (4 with cerebral
palsy, 4 with visual impairment, 2 with sensorineural hearing impairment,
and 1 with cerebral palsy and visual impairment) and 4 from the 750 to 1499
g group (2 with cerebral palsy, 1 with sensorineural hearing impairment, and
1 with cerebral palsy and hearing impairment).
ASSESSMENT PROCEDURES
Although child testing was comprehensive, only results from parent interviews
and parent-based child behavior ratings were considered in this study.18 Respondents included mothers (86.6%), fathers (4.9%),
grandparents (6.7%), and foster parents (1.8%). Institutional review board
approval and informed consent from families was obtained prior to participation.
Family outcomes were assessed by administering several self-report scales
to parents. The Brief Symptom Inventory25 (BSI)
was given to assess parent psychiatric symptoms; the Competence and Attachment
scales of the Parenting Stress Index26 assessed
the quality of parent-child interaction27;
the Impact on Family Scale version G (IOF-G)28
measured the negative impact of the child's health on the family; and the
McMaster Family Assessment Devise29 evaluated
family functioning. The BSI General Severity Index, IOF-G Total Negative Impact,
and McMaster Family Assessment Devise General Functioning scale were used
as summary measures of parent symptoms of distress, family stress owing to
the child's health, and family dysfunction, respectively.
To further assess the parent's perception of child-related family stress,
we administered the Family Burden Interview. This procedure was modeled after
a similar assessment used in a study of family outcomes in children with traumatic
brain injury.30 The latter study documented
the reliability of the procedure, and validity was substantiated by associations
of interview results with both injury severity and the IOF-G. In the modification
employed in this study, the interviewer first asked parents if their children
had any medical, developmental-learning, school, or emotional-behavioral problems.
Parents who identified a problem were then asked about the nature of their
concerns for the child and family. For each concern, parents rated the level
of associated stress on a 0 to 4 scale (not stressful to extremely stressful).
When parents endorsed multiple child problems, they identified the ones associated
with stress. The overall burden on this measure was assessed in terms of the
presence or absence of any child-related stress.
To provide a more encompassing assessment of family sequelae, we also
classified families as having adverse or nonadverse outcomes. Adverse outcomes
were identified by: (1) a T score greater than 70 on either the General Severity
Index of the BSI or on 2 BSI subscales; (2) a score above the 95th percentile
on either of the 2 Parenting Stress Index scales; (3) the presence of significant
family dysfunction, as indicated by a score of greater than 2.17 on the McMaster
Family Assessment Devise General Functioning scale31;(4)
an IOF-G Total Negative Impact score greater than 2 SDs above the mean for
the full-term group; or (5) report of high stress (ratings >2) on the Family
Burden Interview.
Measures used to assess the child's functional health included the Child
Behavior Checklist,32 a parent-based rating
of child behavior problems, and the Vineland Adaptive Behavior Scales,33 a parent interview procedure for assessing behavioral
development and adaptive functioning. Children with functional health problems
were those with a Child Behavior Checklist Total Problem score greater than
63, a Vineland Adaptive Behavior Composite score less than 70, and/or a neurosensory
disorder as defined above.
DATA ANALYSIS
Given our interest in relating predictor variables to both continuous
and dichotomous measures of outcome, data analysis was conducted using hierarchical
multiple regression. Linear regression was used in analysis of continuous
outcomes, and logistic regression in analysis of the dichotomous measures.
Birth weight group was defined in the models by dummy variables representing
contrasts between each of the VLBW groups and the full-term group. Children
with VLBW were classified as at low or high neonatal risk based on their scores
on the Neonatal Risk Index (0-3 = low risk, 4-8 = high risk). Sociodemographic
status was classified as advantaged or disadvantaged.
In the first series of analyses, we compared models that included the
2 birth weight group contrasts and sociodemographic status with models that
included these factors plus their interactions. If the interaction terms did
not add to the prediction of a given family outcome, models without the interaction
terms were used to test the effects of birth weight and sociodemographic status.
Only data for the 2 VLBW groups combined were considered in the second series
of analyses. These analyses paralleled those just described, with low vs high
neonatal medical risk substituted for the birth weight group contrasts. The
third series of analyses examined the possibility that concurrent child health
problems mediated any relationships of family outcomes with birth weight or
neonatal medical risk. As required in tests of mediating relationships,34 we first tested associations between the latter factors
and the presence of child problems. We then carried out hierarchical regressions
to determine if the child problems factor was related to family outcomes,
and if relationships of either birth weight or neonatal medical risk to family
outcomes were reduced when this factor was included as a predictor. The 
level for significance was P<.05 for all analyses.
RESULTS
EFFECTS OF BIRTH WEIGHT GROUP AND SOCIODEMOGRAPHIC STATUS
Table 2 presents results
from analyses of the effects of birth weight group and sociodemographic status
on the continuous measures of family outcome. Differences between the less
than 750 g group and full-term controls were found for the Parenting Stress
Index Competence and Attachment scales. Both scales indicated more parenting
difficulties in the less than 750 g group. Parents of the children who were
less than 750 g also reported a more negative impact of the child's health
status on the family on the IOF-G than did parents of full-term children.
Sociodemographic status was related to 3 of the measures. In all instances,
outcomes were poorer for disadvantaged families than for advantaged families.
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Table 2. Summary of Findings From Comparisons of Birth Weight Groups
on Continuous Measures of Family Outcome*
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Examination of results from the Family Burden Interview revealed that
36 parents (61%) of the less than 750 g group compared with 27 parents (51%)
of the 750 to 1499 g group and 14 (32%) of the full-term group endorsed child-related
stress ( 22 = 8.68, P<.05).
Results from logistic analysis showed a higher rate of stress in the less
than 750 g group than in the full-term group (odds ratio [OR] = 3.35; confidence
interval [CI], 1.47-7.63; P = .004).
Further analysis of group differences in the Family Burden Interview,
adjusting for the effects of sociodemographic status, indicated that differences
between the less than 750 g group and full-term group were related to parent
reports of developmental/learning and emotional/behavioral problems, but not
to parent reports of medical or school problems. Individual concerns for which
higher rates of stress were reported in the less than 750 g group pertained
to the need for child supervision, acceptance of the child by peers and the
child's self-esteem, the effects of child problems on family routines, and
the child's future.
According to the criteria listed earlier, 30 parents (51%) from the
less than 750 g group had at least 1 adverse family outcome, compared with
19 (36%) from the 750 to 1499 g group and 12 (27%) from the full-term group
(22 = 6.24; P<.05).
Logistic regression showed that the rate of adverse family outcomes was higher
in the less than 750 g group than in the full-term group (OR = 2.75; CI, 1.19-6.38; P<.05).
EFFECTS OF LOW VS HIGH NEONATAL MEDICAL RISK AND SOCIODEMOGRAPHIC STATUS
FOR THE VLBW GROUPS COMBINED
Table 3 presents findings
from analyses of the effects of neonatal medical risk (VLBW groups combined)
and sociodemographic status on the continuous measures of family outcome.
The results indicate that differences between the neonatal risk groups on
the IOF-G were dependent on sociodemographic status. According to simple effects
tests, there was a more negative impact on families for the high-risk group,
but only in advantaged families. As in the previous analyses, outcomes were
poorer for disadvantaged than for advantaged families on several of the measures.
Logistic regression analysis also revealed a higher rate of adverse family
outcomes for children with VLBW at high vs low neonatal medical risk (OR =
2.27; CI, 1.00-5.13; P<.05).
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Table 3. Summary of Findings From Comparisons of VLBW Children at Low
vs High Neonatal Medical Risk on Continuous Measures of Family Outcome*
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MEDIATING EFFECTS OF CONCURRENT CHILD HEALTH PROBLEMS
Concurrent problems in functional health were identified in 32 children
(53%) in the less than 750 g group, 12 children in the 750 to 1499 g group
(22%), and 4 full-term controls (8%) (22 = 28.52; P<.001). These problems were identified in 25 children
with VLBW (60%) in the high neonatal medical risk group and 17 (27%) in the
low-risk group (22 = 11.52; P = .001). In logistic analysis that controlled for the effects of
sociodemographic status, only the difference between the less than 750 g group
and full-term group was significant (OR = 12.96; CI, 4.13-40.68; P<.001). Adjusting for sociodemographic status, the rate of child
problems was also higher in children with VLBW at high relative to low neonatal
medical risk (OR = 4.09; CI, 1.76-9.49; P = .001).
Results from the hierarchical regression analyses presented in Table 4 reveal that the presence of child
problems was associated with several of the family outcomes, even after taking
into account birth weight group contrasts and sociodemographic status. In
each of these instances, family outcomes were poorer for children with problems
than for children without problems. As evidence for a mediating effect of
child problems, the effects of the birth weight group contrasts were diminished
by inclusion of the child problems factor as a predictor.
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Table 4. Results of Hierarchical Regressions Relating Sociodemographic
Status (Advantaged vs Disadvantaged), Birth Weight Group (<750 g vs Full-Term,
750-1499 g vs Full-Term), and Concurrent Child Health Problems (Present, Absent)
to Continuous Measures of Family Outcome*
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The presence of child health problems was also associated with higher
rates of child-related stress on the Family Burden Interview and adverse family
outcomes. Furthermore, the effects of the less than 750 g group vs full-term
group contrasts were no longer significant with the child problems factor
included as a predictor. Similar results were obtained in analyses involving
comparisons of children with VLBW at high vs low neonatal medical risk. None
of the birth weight contrasts or high vs low neonatal risk group effects remained
significant when families of children with these problems were excluded from
analysis.
COMMENT
Compared with parents of full-term controls, parents of children with
birth weights less than 750 g reported lower perceptions of parenting competence,
more difficulties related to child attachment, a more negative impact of the
child's health on the family, and higher rates of both child-related family
stress and adverse family outcomes. These differences were found even when
adjusting for the effects of sociodemographic status. The results are consistent
with previous reports of negative family outcomes in young children with VLBW6, 8 and suggest that family sequelae persist
into the school-age years.
Family sequelae were also related to the extent of neonatal medical
risk within the VLBW groups. Specifically, parents of children with VLBW at
high neonatal medical risk reported more adverse outcomes than did parents
of children at low risk. The latter findings, which are in keeping with studies
of family outcomes in younger children with VLBW,2, 8, 10
suggest that family sequelae are most likely for the least mature and most
medically compromised infants.
Further support for a gradient of family sequelae was provided by the
absence of significant differences in outcome between the 750 to 1499 g group
and full-term group and by the fact that rates of adverse family outcomes
for the 750 to 1499 g group fell between those for the less than 750 g group
and full-term controls. Because several the children in the 750 to 1499 g
group were at high neonatal medical risk, we interpret the lack of differences
between the 750 to 1499 g group and full-term group as reflecting the lower
overall biological risk in this group relative to the less than 750 g group.
Thus, families of some children in the 750 to 1499 g group may be adversely
affected, but sequelae in this group may be less pervasive and more difficult
to detect than in families of children whose birth weights were less than
750 g.
Our findings also confirm the importance of considering sociodemographic
status in evaluating family sequelae.6, 17
Several outcomes were poorer in sociodemographically disadvantaged families
than in more advantaged families. In addition to the direct effects of sociodemographic
status on family outcomes, this factor moderated the association between neonatal
medical risk and the negative impact of the child's health on families as
measured by the IOF-G. The negative effect of high vs low neonatal medical
risk on this outcome was evident only in the advantaged families. This same
pattern of findings has been observed in studies of child outcomes of low
birth weight21, 22 and suggests
that impact of children with VLBW on families may have been obscured by other
family stressors.
Despite persisting family sequelae, nonadverse outcomes were common
even in the less than 750 g group and in the subset of children with VLBW
at high neonatal medical risk. Moreover, group differences were not observed
for measures of parent psychiatric symptoms or family functioning. These results
parallel findings from past studies showing that most families adjust successfully
to children's disabilities.35 The positive
outcomes observed in many of the families may be explained by parents' tendencies
to set appropriate expectations for children, to view children's quality of
life as high, even in cases of serious residual disability, and to adapt to
and compensate for their child's needs.36, 37
As observed in several past studies,5, 6, 17
negative family outcomes were related to the presence of concurrent problems
in the child's functional health status. Consistent with previous reports
of child outcomes in this sample,13, 14, 23, 38
the less than 750 g group had much higher rates of functional health problems
than the full-term controls. The possibility that the presence of child health
problems mediated relationships of birth weight and neonatal medical risk
with the family outcomes was suggested by 2 findings. First, families of children
with concurrent health problems reported poorer outcomes than families of
children without these problems. Second, differences in family outcomes for
children differing in birth weight or neonatal medical risk were reduced when
the presence of child problems was considered as a predictor. No effects of
birth weight or neonatal medical risk were detected when families of children
with problems were excluded from analysis.
The results of the Family Burden Interview suggested that adverse family
outcomes were related to emotional/behavioral and developmental/learning problems
in the children. Parents' reluctance to label physical disorders or special
education placements as problems may have stemmed from a belief that children's
medical and educational needs were being appropriately addressed, or that
problems in these areas were to be expected. Sources of family stress included
concerns about both the children (self-esteem, acceptance by peers, the future)
and their impact on family members (need for child supervision, altered family
routines). These concerns are similar to those identified in studies of children
with other chronic conditions,16, 30
and they illustrate the special challenges faced by the families of some children
with VLBW.
The most likely reason for the negative effects of VLBW or high neonatal
medical risk on families is that parents were burdened by birth-related problems
in the child's health and development. A further possibility is that, although
parent distress during the neonatal period may have resolved,1, 8, 9
this distress had longstanding effects on the family and its relationship
with the child. These effects, in turn, may have led to family adversity.
Family stresses and dysfunction may also have had negative influences on the
child's psychosocial development, thus contributing to negative bidirectional
relationships between family and child outcomes.39, 40, 41
Thus, both environmental factors and the child's neurodevelopmental impairments
may explain long-term family sequelae.9, 10, 11
Study limitations include reliance on parent self-report and assessment
of only 1 family member. Direct observation of the family environment and
family interactions, together with outcome data for other family members,
would have provided a more comprehensive assessment of outcome. The disproportionate
attrition from our original sample of families of lower sociodemographic status,
which mirrors a trend seen in other long-term follow-up studies,42
also raises questions about the generalizability of our findings. Finally,
only a small amount of the variability in family outcomes was accounted for
by birth weight, neonatal medical risk, and sociodemographic status. Families
are undoubtedly influenced by many factors that were not considered in our
analyses. Despite these weaknesses, the less than 750 g group is 1 of the
largest regional cohorts to be assessed at school age. The attrition rate
was relatively low and sociodemographic status was taken into account in analysis.
More research is needed to explore longer-term family adversity and
the interrelationships of child and family outcomes. Follow-up of our sample
of children with VLBW has not demonstrated decreases in child morbidity with
time.14, 18 Stresses on families,
therefore, are not likely to diminish with age and may even increase as progressively
greater demands are made on children's cognitive skills and independent functioning.43 Other avenues for future research are to examine
prospectively the nature of the parent burdens and parent-child relationships
in greater detail, and to identify family characteristics that moderate risks
for poor family outcomes.10, 14
For example, the risks for family sequelae may be lessened when friend- or
spouse-support is high or when families have access to counseling resources.
Conversely, risks may be heightened in single-parent households or in families
with multiple non-child–related stressors.5, 6, 9, 35
The enduring adversity experienced by some families of children with
VLBW supports the need for careful monitoring of family outcomes and for services
aimed at improving family support systems and the family environment.6, 35, 44 Given the relationship
between ongoing functional health problems and family adversity, assisting
parents in managing child behavior and promoting the child's development may
be a critical component of family interventions.
AUTHOR INFORMATION
Accepted for publication October 4, 2000.
This study was supported by grant HD26554 from the National Institute
of Child Health and Human Development, Bethesda, Md.
We acknowledge the contributions of Jennifer Angelopoulos, MEd, Anne
Birnbaum, Diane Pacella, MEd, and Kathy Winter in data collection and coding,
and Mark Schluchter, PhD, for assistance in data analysis. We thank Ruth K.
Stein, MD, for use of the Impact on Family Scale.
From the Department of Pediatrics, Case Western Reserve University,
Rainbow Babies and Children's Hospital of University Hospitals of Cleveland
(Drs Taylor and Hack, and Ms Minich); and the Department of Education, Cleveland
State University (Dr Klein), Cleveland, Ohio.
Corresponding author and reprints: H. Gerry Taylor, PhD, Department
of Pediatrics, Rainbow Babies and Children's Hospital, 11100 Euclid Ave, Cleveland,
OH 44106-6038.
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