DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY ORIGINAL ARTICLE

Maternal employment and socio-economic status of families

raising children born very preterm with motor or cognitive
impairments: the EPIPAGE cohort study
MARIE-JOSEPHE SAUREL-CUBIZOLLES 1 | LAETITIA MARCHAND-MARTIN 1 | VERONIQUE PIERRAT 1,2 |
CATHERINE ARNAUD 3 | ANTOINE BURGUET 4 | JEANNE FRESSON 1,5 | STEPHANE MARRET 6 |
JEAN-CHRISTOPHE ROZE 7 | GILLES CAMBONIE 8 | JACQUELINE MATIS 9 | MONIQUE KAMINSKI 1 |
PIERRE-YVES ANCEL 1

1 Inserm UMR 1153, Obstetrical, Perinatal and Pediatric Epidemiology Research Team (Epope), Centre for Epidemiology and Statistics Sorbonne Paris Cite, DHU Risks
in Pregnancy, Paris Descartes University, Paris; 2 Department of Neonatal Medicine, University Hospital Jeanne-de-Flandres, Lille; 3 Inserm UMR 1027 (SPHERE Study
of Perinatal, Child and Adolescent Health: Epidemiological Research and Evaluation), University Toulouse III Paul Sabatier, Toulouse; 4 Pediatric Department - Pediatrie
2, University Hospital Francßois Mitterrand, Dijon; 5 Department of Medical Information, Nancy University Hospital, Nancy; 6 Department of Neonatal Medicine and
Neuropediatrics, Rouen University Hospital, and INSERM UMR 1245 Team 4 Neovasc Perinatal Neurological Handicap, School of Medicine, Normandy University,
Rouen; 7 Department of Neonatal Medicine, University Hospital, Nantes; 8 Department of Neonatal Medicine, University Hospital Arnaud de Villeneuve, Montpellier;
9 Department of Neonatal Medicine, University Hospital, Strasbourg, France.
Correspondence to Marie-Josephe Saurel-Cubizolles, Inserm UMR 1153, Obstetrical, Perinatal and Pediatric Epidemiology Research Team (Epope), Centre for Epidemiology and Statistics
Sorbonne Paris Cite, DHU Risks in Pregnancy, Paris Descartes University, Paris, France. E-mail: marie-josephe.saurel@inserm.fr

This original article is commented on by Lakshmanan, Smith, and Vanderbilt on pages 1117–1118 of this issue.

PUBLICATION DATA
Accepted for publication 26th April 2020.
Published online 18th June 2020.
AIM To describe maternal employment and the socio-economic status of the household up
to 8 years after the very preterm birth of a child, according to the presence and type of motor
or cognitive impairment.
METHOD A total of 1885 families from the French EPIPAGE cohort of children who were born
very preterm between 1997 and 1998 were included. Motor and cognitive impairments were
identified in children between the ages of 2 and 8 years in 770 families and were classified
according to type. The 1115 families with children born very preterm without these
impairments were considered the reference group.
RESULTS Mothers of children with severe motor or cognitive impairments were less often
working at 5 years after the birth than the reference mothers (21% and 30% vs 57%; p<0.001).
Those working before birth returned to work less often and those not working started to
work less often after the birth than did reference mothers. At 8 years, mothers of children
with severe impairments reported financial difficulties more often than mothers of children
without impairments.
INTERPRETATION Despite a fairly protective regulatory framework in France, families of
infants born very preterm with severe motor or cognitive impairments are socially
underprivileged. Measures to maintain an acceptable standard of living for these families and
their children are needed.

The arrival of a newborn in a family always leads to adjust-
ments in the timetable of the parents and the occupational
activity of the mother. In France, a study found that about
20% of females who worked during pregnancy did not
resume their job 1 year after the birth of their first child.1
When the mother stops or reduces her paid job, the finan-
cial resources of the family are affected at a time when
expenses are increasing with the birth and the education of
the child.
In 2015 in Europe, very preterm birth rates ranged from
0.8% to 1.4%.2 In France, the rates of preterm birth were
2.1 per 1000 live births before 27 weeks’ gestation and 7.5
from 27 to 31 weeks’ gestation; in 2011, nearly 13 000
children were born at less than 32 weeks’ gestation.3 The
survival of these infants has improved over time, so the
number of families raising a child born very preterm is
increasing.3
The question of the compatibility of maternal employ-
ment and the rearing of a newborn child is especially
important with very preterm births, mainly because: (1)
these births are more common among socially underprivi-
leged families;4 (2) children born very preterm are at high
risk for a range of motor or developmental impairments
including cerebral palsy (CP), cognitive and behavioural
disabilities such as delayed language skills, fine motor dis-
orders, dysexecutive syndrome, autism spectrum disorders,

1182 DOI: 10.1111/dmcn.14587 © 2020 Mac Keith Press

hyperactivity–attentional deficits, and learning difficulties;5
and (3) it is difficult for families to care for these children
in the early years of their lives, especially if they require
special care, more parental time, and increased financial
expense.6
Thus, it is important to document maternal employment
with accurate data for very preterm births. The living con-
ditions of families, including their financial resources, need
consideration. The quality of life and the care of these
children, particularly those with severe impairments, affect
and depend on both the family and social conditions.
France is characterized by a comprehensive but complex
system of social and medical protection. The frequency of
mothers not resuming an occupational activity after a birth
is lower than in Sweden, Germany, or the UK.7 This situa-
tion is partly explained by differences in modalities of par-
ental leave and in possibilities for daily child care before
the age of 6 years. In France, child care for children
younger than 3 years is provided by approved child-care
assistants employed by the family, by creches, or by one of
the parents, usually the mother, and less frequently by
another family member.8 Since 2019, pre-elementary
school has been compulsory from age 3 years; however, in
the 2000s, almost all 3-year-olds were already enrolled in
school,8 which is free of charge.
The welfare system provides resources to support dis-
abled persons and their families, on the basis of the level
of disability. A special allowance, the ‘Allocation
d’Education de l’Enfant Handicape’, is a family benefit to
compensate for the care and education costs of a disabled
child younger than 20 years. In France, the schooling of
children with disabilities was established as a principle by a
law passed in July 1991, confirmed in 2005.9 The French
state affirms the right of every child to schooling in an
ordinary environment as close to home as possible and to a
continuous and adapted school career with specific sup-
port. Parents have to apply for allowances to compensate
for the child’s disability and for specific support at school
from the service for disability in their area of residence.
However, the actual functioning of these procedures is not
well known and it varies according to the area. The ‘conge
de presence parentale’ allows the parent employee to bene-
fit from a number of days of leave – about 1 year off over
3 years – to be used to care for a dependent child with a
disability or because of an accident that requires parental
presence. This leave, which is not paid by employers, is
compensated by the ‘allowance of parental presence’. Other
regulations allow parents who work to adjust their working
hours to care for their disabled child.
In general, as in the context of a preterm delivery, moth-
ers may have difficulties reconciling paid work and care for
a disabled child, and the financial burden to families can
be high. The aim of this study was to compare maternal
employment 5 and 8 years after a preterm birth and the
socio-economic status of the household 8 years after the
birth according to the presence or not of motor or cogni-
tive impairments in the child.
Employment of Mothers of Very Preterm Children Marie-Josephe Saurel-Cubizolles et al.
What this paper adds
• Impairments in children born very preterm have a strong long-term social
impact on the family and poverty is frequent.
• Mothers of these children and in whom severe impairments develop are fre-
quently unemployed.
• Pre-existing social inequalities are aggravated for children born very preterm
who develop severe impairments.
METHOD
Design of the EPIPAGE cohort
This cohort included all births between 22 and 32 com-
pleted weeks of amenorrhoea in 1997 in nine regions of
France, and all births between 22 and 26 weeks in 1998 in
eight of these regions. In 1997, 4% of live-born infants
died in the delivery room, and 12% in 1998. Survival to
discharge was 85% of live births in 199710 and 55% in
1998; there were no survivors among infants born at 22
weeks of amenorrhoea. In total, 2513 children born
between 23 and 32 weeks’ gestation, from 2133 families,
were discharged alive from the hospital.
At recruitment, parents were told about the study, given
written information, and gave verbal consent to use of
their data. According to national regulations, the study was
approved by the French data protection agency.
Data collection and follow-up
Gestational age, in completed weeks of amenorrhoea,
refers to the best obstetric estimate, using routine early
ultrasonography and date of the last menstrual period. At
recruitment, medical and social information was collected
in maternity and neonatal units from medical records and
from the mother. All children were invited to participate in
the follow-up, except in two regions, for which only one of
every two infants born at 32 weeks’ gestation was included
in the follow-up.11
After excluding 97 families who refused to participate,
27 families in which the index child died after discharge,
and 124 families lost to follow-up between birth and
2 years, 1885 families were eligible for further follow-up.
Among them, 1507 completed the parental questionnaire
at 5 years and 1283 at 8 years (Fig. S1, online supporting
information).
When children were 2 years old, the age of a mandatory
check-up in France, a standard questionnaire was com-
pleted by the child’s treating physician, and the mother
returned a completed questionnaire by mail. At age
5 years, children underwent a standardized examination,12
including a short version of the Touwen neurological
examination13 and a developmental evaluation with the
Kaufman Assessment Battery for Children.14 When chil-
dren were 5 and 8 years old, self-administered question-
naires were completed by parents to collect information
about the child’s health and school situation as well as
family characteristics. Moreover, in five regions, additional
information on disabilities was collected for all children
with a record in the local office for people with disabili-
ties.
1183
Classification of impairments
The classification of impairments was detailed in a previ-
ous paper.15 To be able to classify as many children as
possible, all available data from all the stages of follow-up
were used, priority being given to the most recent informa-
tion, up to 8 years. Table 1 shows the groups retained for
motor and cognitive impairments, including those referring
to type or association of impairment. The 1115 families of
children for whom no motor or cognitive impairment was
identified up to age 8 years were considered the reference
group. Numbers in each group are shown in Table 1.
Outcome indicators
When children were 5 years old, the following indicators
of maternal employment were considered: employed at 5-
year follow-up (yes/no) and change of work status between
pregnancy and 5-year follow-up.
When children were 8 years old, the following indicators
were studied: mother employed at 8-year follow-up (yes/no),
total monthly income of the family in three classes (<€1500,
€1500–3000, and >€3000 per month), ‘financial difficulties
for medical care in the past year’ (none, a little, a lot), and ‘fi-
nancial difficulties for housing in the past year’ (none, a little,
a lot). Questionnaires were different for ages 5 and 8 years, so
similar indicators were not available at both ages.
Social characteristics
Maternal level of education was documented at the interview
in the maternity or neonatal unit; three levels were consid-
ered: lower than high school, high school, and more than high
school. Maternal employment during pregnancy was
described in two classes (yes/no). The socio-economic status
of the family was grouped in five classes according to the
highest occupational status between the mother and father at
birth or mother only if living alone: professionals, managers,
or intellectual occupations; intermediate occupations; cleri-
cal, civil service, farmers, or shopkeepers; shop assistants or
service workers; and manual workers or unemployed.

Table 1: Classification of motor and cognitive impairments, number of included families, and response rates to parental questionnaires at 5 and 8 years

Parental questionnaire

Total number 5y 8y
of families
n n (%) n (%)

Total of families included 1885 1507 (80) 1283 (68)

Motor impairments 310 243 (78) 209 (67)
Severe CP CP unable to walk or walking only 73 44 (60) 35 (48)
with aid at 8y or 5y, or 2y if
no further follow-up
Moderate CP CP walking without aid at 8y 133 112 (84) 91 (68)
or 5y, or 2y if no further follow-up
Other motor disorder No CP but moderate 104 87 (84) 83 (80)
neuromotor dysfunction at
Touwen examination at age
5y or dyspraxia or motor
coordination trouble at 8y or
5y, or 2y if no further follow-up
Cognitive impairments 637 529 (83) 469 (74)
Severe Intellectual disability at 8y or 136 106 (78) 61 (45)
5y (ICD F70–F79) or special
school at 8y, with MPC <70 at 5y,
or no information at
8y but MPC <70 at 5y, or intellectual
disability at 2y if no further follow-up
Moderate Moderate/mild cognitive impairment 501 423 (84) 408 (81)
mentioned in MDPH
questionnaire with no other
details, or if in a mainstream
class at 8y but repeated one
grade and/or needing special
support at school or no information
at 8y but MPC between 70 and 84 at 5y
Association of motor and cognitive impairments
Motor only Severe or moderate CP or other 133 103 (77) 76 (57)
motor disorder without cognitive impairment
Cognitive only Severe or moderate cognitive 460 389 (85) 336 (73)
impairment without motor impairment
Motor and cognitive Motor impairment and cognitive 177 140 (79) 133 (75)
impairment associated
Any of the above situations Any motor or cognitive impairment 770 632 (82) 545 (71)
No impairment No motor or cognitive impairment identified 1115 875 (78) 738 (66)

This classification was used in a previous paper.11 CP, cerebral palsy; ICD, International Classification of Disease; MPC, Mental Processing
Composite score of the Kaufman Assessment Battery for Children; MDPH, Maisons de partementales des Personnes Handicape es, special
services for people with impairment at the local level.

1184 Developmental Medicine & Child Neurology 2020, 62: 1182–1190

 Other variables were maternal age at birth and family
situation according to whether the mother was living with
or without a partner, assessed at the child’s birth and at
ages 5 and 8 years. The size of the family before the birth
of the index child and at ages 5 and 8 years was also con-
sidered.
Statistical analysis
The statistical unit of analysis was the family, not the
child. In the case of twins, the condition of the most seri-
ously affected child was considered for the classification.
Families of children with impairments were compared
with the reference group in terms of characteristics at birth
and 5 and 8 years. At each age, to better estimate the
impact of the children’s disabilities on maternal employ-
ment, we used multivariate logistic regression models to
account for differences in the social context of families,
adjusting for maternal level of education, living with or
without a partner, and the number of children in the fam-
ily at the studied age. Similarly, the analyses of income and
financial difficulties at 8 years were adjusted for the same
characteristics plus maternal employment. The percentages
were compared using v2 tests: the crude comparison by
Pearson v2 test and the adjusted comparison by the Wald
v2 test calculated by the multivariate models.
Among the target population (i.e. children for whom the
impairment status was known during at least one follow-up),
families who did not answer the 5- or 8-year questionnaire
were compared with those who responded. The informed
data for all studied variables appear in Table S1 (online sup-
porting information). At 5 years, 20% of families did not
return the completed questionnaire and 32% did not at
8 years. Missing data on outcomes and covariates were
imputed by chained equations using the SAS ‘MI’ proce-
dure.16 Imputation models included variables potentially pre-
dicting both non-response and/or outcomes at 5 and 8 years
and some auxiliary variables. All variables were included in all
imputation models. Estimates were pooled according to
Rubin’s rule. The method is detailed in Appendix S1 (online
supporting information). Analyses of the imputed data are
reported in Tables 1 to 4 and complete-case analyses in
Tables S1 to S5 (online supporting information).
Because of the large proportion of twins among very
preterm births (32%10) and the potential impact of these
births on maternal employment, the main outcome indica-
tors were also analysed separately for families with

Table 2: Social characteristics at birth by type of child impairment among preterm births at 23–32 weeks’ gestation

Motor impairment Cognitive impairment Association of impairments

Other Motor
No Severe Moderate motor Only Only and
impairment All CP CP disorder All Severe Moderate motor cognitive cognitive

(1115) (310) (73) (133) (104) (637) (136) (501) (133) (460) (177)

At birth
Maternal age (y)
<25 21.7 21.5 37.7 18.0 14.4 26.6 32.8 24.9 18.0 27.6 24.0
25–34 62.3 63.4 50.0 68.4 66.3 54.7 43.1 57.8 69.9 53.2 58.5
≥35 16.0 15.2 12.3 13.5 19.2 18.8 24.2 17.3 12.0 19.2 17.5
pa ns 0.008 ns ns 0.007 <0.001 ns ns 0.003 ns
Maternal level of education
Less than high school 44.9 55.1 58.9 54.8 52.8 65.6 78.7 62.1 42.3 66.0 64.7
High school 22.3 19.3 26.5 16.2 18.3 16.0 11.0 17.3 25.2 16.4 14.9
More than high school 32.9 25.6 14.6 29.0 28.9 18.4 10.3 20.6 32.5 17.7 20.4
pa 0.006 0.008 ns ns <0.001 <0.001 <0.001 ns <0.001 <0.001
b
Parents’ socio-economic status
Professionals 16.0 12.8 11.5 12.1 14.5 7.7 4.4 8.6 17.0 7.0 9.6
Intermediate 27.0 22.6 13.7 22.7 28.8 17.1 11.0 18.8 30.2 17.2 16.9
occupations
Clerical, civil service, 22.0 24.3 26.3 25.0 22.2 26.9 23.5 27.8 19.9 26.6 27.7
self-employed
Shop assistants, 15.9 15.1 15.6 16.1 13.6 17.8 17.6 17.9 16.3 19.2 14.2
service workers
Manual workers 19.1 25.1 32.9 24.2 20.9 30.5 43.4 27.0 16.5 30.1 31.6
or unemployed
pa ns 0.020 ns ns <0.001 <0.001 <0.001 ns <0.0001 <0.0001
Living with a partner
No 8.2 12.2 21.1 7.0 12.7 12.4 14.3 11.8 13.6 12.8 11.2
pa 0.041 0.001 ns ns 0.007 0.027 0.027 ns 0.007 ns
Number of children before the index birth
None 57.4 58.9 54.2 57.3 64.3 55.8 50.9 57.2 64.8 56.4 54.5
1 25.0 23.9 24.8 26.9 19.3 22.6 18.4 23.8 22.3 21.7 25.0
≥2 17.6 17.2 20.9 15.8 16.4 21.5 30.6 19.1 12.9 21.9 20.5
pa ns ns ns ns ns 0.002 ns ns ns ns

Table shows results from multiple imputation analyses (1885 families). Data are (n) or % unless otherwise stated. a p: comparison with ‘No
impairment’ using v2 test; ns, not significant. b Defined as the highest occupational status between the mother and father, or mother only
if living alone. CP, cerebral palsy.

Employment of Mothers of Very Preterm Children Marie-Josephe Saurel-Cubizolles et al. 1185

1186
Table 3: Maternal employment at 5 years by type of child impairment among preterm births at 23–32 weeks’ gestation

Motor impairment Cognitive impairment Association of impairments

Other Motor
No Severe Moderate motor Only Only and
impairment All CP CP disorder All Severe Moderate motor cognitive cognitive

(1115) (310) (73) (133) (104) (637) (136) (501) (133) (460) (177)

Employment during pregnancy 58.8 53.4 39.1 54.0 62.8 45.4 30.9 49.4 55.9 43.1 51.6
pa ns 0.002 ns ns <0.001 <0.001 <0.001 ns <0.001 ns
At 5y
Maternal employment 56.8 44.1 21.3 52.1 49.9 41.6 29.9 44.8 51.3 42.7 38.7

Developmental Medicine & Child Neurology 2020, 62: 1182–1190

pa <0.001 <0.001 ns ns <0.001 <0.001 <0.001 ns <0.001 <0.001
pb 0.013 <0.001 ns ns 0.005 0.003 0.037 ns 0.041 0.006
Change in occupational status between pregnancy and 5y
Among females working during pregnancy (656) (166) (29) (72) (65) (289) (42) (247) (74) (198) (91)
Did not work at 5y 24.4 35.1 59.8 28.6 31.3 35.9 36.2 35.8 25.3 32.6 43.0
pa 0.010 <0.001 ns ns <0.001 ns 0.002 ns 0.033 <0.001
pb ns 0.004 ns ns 0.024 ns 0.034 ns ns 0.008
Among females not working during pregnancy (459) (144) (44) (61) (39) (348) (94) (254) (59) (262) (86)
Worked at 5y 30.0 20.2 9.3 29.5 18.0 22.8 14.7 25.8 21.7 24.0 19.2
pa 0.031 0.007 ns ns 0.032 0.012 ns ns ns 0.057
pb ns 0.018 ns ns ns ns ns ns ns ns

Table shows results from multiple imputation analyses (1885 families). Data are (n) or % unless otherwise stated. a p: comparison with ‘No impairment’ using v2 test; ns, not significant.
b
p: comparison with ‘No impairment’ adjusted for maternal level of education, living with a partner at 5y, and number of children at 5y (1/2/3 or more) using Wald test by multivariate
logistic regression models. CP, cerebral palsy.
Table 4: Maternal employment and financial situation of the household at 8 years by type of child impairment among preterm births at 23–32 weeks’
gestation
Motor impairment Cognitive impairment Association of impairments

No Severe Moderate Other motor Only Only Motor and

impairment All CP CP disorder All Severe Moderate motor cognitive cognitive

(1115) (310) (73) (133) (104) (637) (136) (501) (133) (460) (177)

At 8y
Maternal 61.1 50.8 30.8 59.9 53.3 50.1 37.3 53.5 53.4 50.5 48.9
employment
p a
0.002 <0.001 ns ns <0.001 <0.001 0.006 ns <0.001 0.003
pb ns <0.001 ns ns ns 0.014 ns ns ns ns
Monthly household income (€)
<1500 22.9 39.1 65.0 30.3 32.0 49.5 66.3 44.9 32.1 51.5 44.3
1501–3000 51.3 40.2 21.5 47.8 43.6 36.8 24.3 40.2 42.8 36.3 38.2
>3000 25.8 20.8 13.5 21.9 24.3 13.7 9.5 14.8 25.1 12.2 17.5
pa <0.001 <0.001 ns ns <0.001 <0.001 <0.001 ns <0.001 0.011
pc 0.040 0.003 ns ns <0.001 <0.001 <0.001 ns <0.001 0.005
Financial difficulties in the past year
For medical care
No 94.2 74.1 47.8 78.2 87.3 74.4 64.4 77.1 77.4 75.5 71.5
A little 5.0 19.2 32.2 18.1 11.4 18.9 27.2 16.6 16.8 18.0 21.1
A lot 0.8 6.7 20.0 3.7 1.3 6.7 8.5 6.3 5.8 6.5 7.4
pa <0.001 <0.001 <0.001 0.042 <0.001 <0.001 <0.001 <0.001 <0.001 <0.001
pc <0.001 <0.001 <0.001 0.095 <0.001 <0.001 <0.001 <0.001 <0.001 <0.001
For housing
No 85.4 66.1 40.8 72.2 76.2 64.5 56.1 66.7 72.1 65.5 61.7
A little 13.0 25.9 41.3 22.6 19.4 27.1 35.4 24.8 20.7 26.0 29.8
A lot 1.6 8.0 18.0 5.2 4.4 8.5 8.4 8.5 7.3 8.4 8.5
pa <0.001 <0.001 0.002 0.036 <0.001 <0.001 <0.001 0.003 <0.001 <0.001
p c
<0.001 <0.001 0.004 ns <0.001 <0.001 <0.001 0.030 <0.001 <0.001

Table shows results from multiple imputation analyses (1885 families). Data are (n) or % unless otherwise stated. a p: comparison with ‘No
impairment’ using v2 test; ns, not significant. b p: comparison with ‘No impairment’ adjusted for maternal level of education, living with a
partner at 8y and number of children at 8 years (1/2/3 or more) using Wald test by multivariate logistic regression models. c p: comparison
with ‘No impairment’ adjusted for maternal level of education, living with a partner at 8y, mother’s employment at 8y, and number of
children at 8 years (1/2/3 or more) using Wald test by multivariate logistic regression models. CP, cerebral palsy.

singletons and twins (Table S3). We performed a similar
stratification with separate analyses for females living with
or without a partner to take into account the family con-
text (Table S4). Finally, we conducted a sensitivity analysis
restricted to the 1997 births to ensure the validity of our
results because the families included in 1998 corresponded
to the particular context of births between 22 and 26
weeks’ gestation (Table S5).
All tests were two-sided, with significance determined at
p<0.05. All analyses were performed with SAS version 9.4
(SAS Inc, Cary, NC, USA).
RESULTS
Description of the sample
The number of families and the response rates to the ques-
tionnaires at 5 and 8 years by type of impairment of children
born very preterm are shown in Table 1. Response rates at 5
and 8 years were lower for families with children with severe
CP and at 8 years for families with children exhibiting sev-
ere cognitive impairment compared with reference families.
Non-respondent mothers were more often younger at birth,
living without a partner, and belonging to underprivileged
social groups than were respondent mothers, but differences
were not significant for gestational age at birth (Table S1).
Among reference families, 16% had twins. This percent-
age was higher for families having children with severe or
moderate CP or moderate cognitive impairment (34%,
21%, and 21% respectively). It was similar for families
having children with severe cognitive impairment or other
motor impairment, but not CP (17% for both).
Demographic and social characteristics at birth
The social profile of families at the child’s birth differed
for those with and without impairments between age 2 and
8 years (Table 2). Compared with children without impair-
ments, those with severe CP had younger mothers with a
lower level of education and less privileged social class and
more often living alone. This difference was even more
marked for children with cognitive impairments. The size
of the family was larger for children with severe cognitive
impairments than those without.
Maternal employment 5 and 8 years after birth
At 5 years, the proportion of employed mothers was signifi-
cantly lower when the child had a severe motor impairment,
a severe or moderate cognitive impairment, or associated
motor and cognitive impairments versus no impairments
(Table 3). This percentage was lower for mothers of chil-
dren with severe than moderate impairments, both motor
and cognitive. These differences remained significant even
after adjustment for maternal educational level, living with
or without a partner, and the number of children.

Employment of Mothers of Very Preterm Children Marie-Josephe Saurel-Cubizolles et al. 1187

 Similar differences were already observed during preg-
nancy: mothers of children with severe impairment, motor
or cognitive, had less often been working than mothers of
children without impairments. Among females who had
worked during pregnancy, the proportion not working at
5 years was higher for mothers of children with severe CP,
moderate or severe cognitive impairment, or both motor
and cognitive impairments, versus no impairments. Among
females who had not worked during pregnancy, the pro-
portion working at 5 years was lower for mothers of chil-
dren with an impairment, especially severe CP, severe
cognitive impairment, or both motor and cognitive impair-
ments, versus no impairments.
At 8 years (Table 4), the proportion of employed
females followed the same trend as at 5 years. After adjust-
ment, this proportion remained significantly lower for
mothers of children with severe CP or severe cognitive
impairment than no impairment.
Household socio-economic status 8 years after birth
At 8 years, income was lower for families of children with
an impairment, especially cognitive impairment, than no
impairment: 50% of families with a child having a cogni-
tive impairment had a monthly income less than €1500
versus 23% in the reference group (Table 4). Conversely,
the proportion of households with a high income (>€3000
per month) was greatest for families with children with no
impairment (26%) and lowest for those with children with
severe cognitive impairment (<10%).
Whatever the type of impairment, but especially for sev-
ere CP, mothers of disabled children more frequently men-
tioned financial difficulties for medical care and housing
than mothers of children with no impairment. These dif-
ferences remained after controlling for maternal occupa-
tional activity at 8 years.
The analysis of complete cases (Table S2) revealed
higher rates of maternal employment at 5 years but similar
differences between groups. The differences by type of
impairment were in the same direction among families of
singletons and twins (Table S3). Mothers living with or
without a partner showed differences in employment and
household income according to impairments (Table S4).
The difference was particularly large for mothers living
without a partner and having children with an impairment
compared with the reference group, although numbers
were small. Finally, the results of the sensitivity analysis
restricted to births in 1997 were very similar to those of
the main analysis (Table S5).
DISCUSSION
To the best of our knowledge, this study is the first to
investigate the social impact of child disability in the con-
text of very preterm birth. EPIPAGE is a large population-
based cohort study that allows for the collection of detailed
information on the social and socio-economic status of
families over time, and thus the study of mothers’
1188 Developmental Medicine & Child Neurology 2020, 62: 1182–1190
occupational activity when their children were 5 or 8 years
old in relation to their work status during pregnancy.
These results highlight how the situation of mothers of
children born very preterm with motor or cognitive
impairments, who were already less often working during
pregnancy than mothers of preterm children without
impairments, is worsened. Those who were working had
less often returned to work 5 years later, and those who
were not working had less often started to work. Eight
years later, mothers of children with severe disabilities,
whether motor or cognitive, often reported low income,
and the socio-economic status was particularly unfavour-
able for families of children with cognitive disorders.
Loss to follow-up is an important issue in longitudinal
studies. Medical information collected from birth to age
8 years allowed us to establish neurodevelopmental status for
90% of the eligible children, but respondent children
belonged to families with a more privileged social status than
those lost to follow-up. In addition, families who had not
completed the parental questionnaire at 5 or 8 years more
often had a poor social situation or children with a severe
impairment than non-respondents. Multiple imputations
were used to partly reduce the potential biases due to these
missing data. However, because of both the social and impair-
ment profiles of families lost to follow-up, the results proba-
bly underestimate the actual impact of impairments on the
social situation of families of children born very preterm.
Another limitation of this study is that it refers to births
during 1997 to 1998. However, nothing in the social situa-
tion, the general standard of living in the country, or
female participation in the workforce would lead us to
hypothesize any different impact of the disability of chil-
dren born very preterm on maternal occupational activity
or household socio-economic status. Finally, the data on
fathers’ employment did not allow a similar analysis but
would have been useful.
The existing literature focuses on the impact of children
with impairments or serious disease in the general popula-
tion but not on the context of a very preterm birth. Previous
studies, mainly in North America or Scandinavia, have
described a lower paid work participation by mothers of
children with disabilities and larger negative impacts on
maternal occupational activity for low-income mothers.17–22
In Australia in 1997, 41% of mothers of a child without a
disability did not work compared with 47% of mothers of
a child with a disability but no severe activity limitation
and 68% of mothers of a child with severe activity limita-
tion.23 The impacts of developmental disabilities on mater-
nal employment persist as children grow older.24,25
Consistent with our results, some studies have reported
that financial difficulties increased for families of children
with special health care needs.26–28 Disabled children are
significantly more likely to grow up in poverty than are
their non-disabled peers. Data from the UK in 2001 to
2005 showed that families supporting a disabled child are
more often exposed to persistent or occasional poverty.29
 In France, only one study focused on maternal occupa-
tional activity and showed lower rates of employment for
mothers of children with a severe disability than in the
general population, with no specific difference for mothers
of children with CP.30 The authors emphasized the burden
for families who have to care for a child with a cognitive
impairment.
Finally, our results highlight the situation of families in
which the mother is living without a partner: these moth-
ers are less likely to be employed than those in two-parent
families, particularly when the child has an impairment.
Many of these families have very low incomes.
Unfortunately, the EPIPAGE study did not collect
detailed information to describe how families benefited or
not, in whole or in part, from the social measures or child
care and schooling related to disability. Hence, evaluating
this impact on maternal employment and socio-economic
status was not possible.
Children born very preterm, especially those with
impairments, are likely to need additional services and sup-
port. Our results raise the question of focused social poli-
cies and highlight the need to make social provisions more
accessible to populations with cumulative disadvantages.
Where support measures exist, their implementation
should be monitored regularly to reinforce the most effi-
cient measures and to continuously adapt social policies by
identifying uncovered needs. All those involved in the
medical and educational care of these children should be
more vigilant of the social situation of their young patients
and their families. The situation calls for improved public
policies for children with disabilities and their families,
preserving the paid employment of both parents.
A CK N O W L E D G E M E N T S
We thank all the parents and children who participated in this
study. The EPIPAGE members are listed in Appendix S2
(online supporting information). The EPIPAGE study was sup-
ported by grants from Inserm, the Directorate General for
Health at the Ministry for Social Affairs, Merck-Sharp and
Dohme-Chibret, the Medical Research Foundation, and ‘Hospi-
tal Program for Clinical Research 2001’ (no. AOM01117) of
the French Ministry of Health. The 8-year follow-up was sup-
ported by the ‘Hospital Program for Clinical Research’ (no.
2004/054/HP) of the French Ministry of Health, the Wyeth
Foundation for Children and Adolescents, and the FEDER
‘European Funds for Regional Development’ of Haute-Nor-
mandie 2010–2013. This analysis received funding from ‘la
Fondation Motrice’. The funders had no role in study design,
data collection and data analysis, decision to publish, or prepa-
ration of the manuscript. The authors have stated that they had
no interests that might be perceived as posing conflict or bias.
SUPPORTING INFORMATION
The following additional material may be found online:
Figure S1: Flow chart of participants.
Table S1: Characteristics at birth of families lost to follow-up
and respondents and non-respondents at 5 years and 8 years
among the 1885 followed families
Table S2: Mother’s employment at 5 and 8 years and house-
hold income by type of child impairment among preterm births at
23 to 32 weeks’ gestation
Table S3: Maternal employment and household income by
type of impairment among preterm births at 23 to 32 weeks’ ges-
tation separately for singletons and twins
Table S4: Maternal employment and household income by
type of impairment among preterm births at 23 to 32 weeks’ ges-
tation separately for females living with or without a partner
Table S5: Maternal employment and household income by
type of impairment among preterm births at 23 to 32 weeks’ ges-
tation restricted to births in 1997
Appendix S1: Method of imputation for missing data
Appendix S2: Members of the EPIPAGE group

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 DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY ORIGINAL ARTICLE

EMPLEO MATERNO Y ESTATUS SOCIOECONOMICO
DE FAMILIAS QUE CR
IAN NINOS

~ NACIDOS MUY PREMATUROS CON
DEFICIENCIAS MOTORAS O COGNITIVAS: EL ESTUDIO DE COHORTE EPIPAGE
OBJETIVO
Describir el empleo materno y el estado socioecono
mico del hogar hasta 8 an~ os despue
s del nacimiento de un nin
~ o prematuro

n) de acuerdo con la presencia y el tipo de discapacidad motora o cognitiva.
(es decir, nacido entre 23 y 32 semanas de gestacio
M

ETODO
Se incluyeron un total de 1885 familias de la cohorte francesa EPIPAGE de nin ~ os que nacieron muy prematuros entre 1997 y 1998.
Las deficiencias motoras y cognitivas se identificaron en nin ~ os entre las edades de 2 y 8 an~ os en 770 familias y se clasificaron
segu ~ os nacidos muy prematuros sin estos impedimentos se consideraron el

n el tipo motor o cognitivo. Las 1115 familias con nin
grupo de referencia.
RESULTADOS
Las madres de nin ~ os con deficiencias motoras o cognitivas graves trabajaban con menos frecuencia a los 5 an
~ os despue

s del naci-
miento que las madres de referencia (21% y 30% frente a 57%; p <0,001). Los que trabajaban antes del nacimiento volvieron a tra-
bajar con menos frecuencia y los que no trabajaban comenzaron a trabajar con menos frecuencia despue
s del nacimiento que las
madres de referencia. A los 8 an ~ os, las madres de nin
~ os con discapacidades graves informaron con mayor frecuencia dificultades
financieras que las madres de nin ~ os sin discapacidades.


INTERPRETACION

s nacidos muy prematuros con deficiencias
A pesar de un marco regulatorio bastante protector en Francia, las familias de los bebe
motoras o cognitivas graves son socialmente desfavorecidos. Se necesitan medidas para mantener un nivel de vida aceptable para
estas familias y sus hijos.

EMPLEO MATERNO Y ESTATUS SOCIOECONOMICO
DE FAMILIAS QUE CR
IAN NINOS

~ NACIDOS MUY PREMATUROS CON
DEFICIENCIAS MOTORAS O COGNITIVAS: EL ESTUDIO DE COHORTE EPIPAGE
OBJETIVO
Describir el empleo materno y el estado socioecono
mico del hogar hasta 8 an~ os despue
s del nacimiento de un nin
~ o prematuro

n) de acuerdo con la presencia y el tipo de discapacidad motora o cognitiva.
(es decir, nacido entre 23 y 32 semanas de gestacio
M

ETODO
Se incluyeron un total de 1885 familias de la cohorte francesa EPIPAGE de nin ~ os que nacieron muy prematuros entre 1997 y 1998.
Las deficiencias motoras y cognitivas se identificaron en nin ~ os entre las edades de 2 y 8 an~ os en 770 familias y se clasificaron
segu ~ os nacidos muy prematuros sin estos impedimentos se consideraron el

n el tipo motor o cognitivo. Las 1115 familias con nin
grupo de referencia.
RESULTADOS
Las madres de nin ~ os con deficiencias motoras o cognitivas graves trabajaban con menos frecuencia a los 5 an
~ os despue

s del naci-
miento que las madres de referencia (21% y 30% frente a 57%; p <0,001). Los que trabajaban antes del nacimiento volvieron a tra-
bajar con menos frecuencia y los que no trabajaban comenzaron a trabajar con menos frecuencia despue
s del nacimiento que las
madres de referencia. A los 8 an ~ os, las madres de nin
~ os con discapacidades graves informaron con mayor frecuencia dificultades
financieras que las madres de nin ~ os sin discapacidades.


INTERPRETACION

s nacidos muy prematuros con deficiencias
A pesar de un marco regulatorio bastante protector en Francia, las familias de los bebe
motoras o cognitivas graves son socialmente desfavorecidos. Se necesitan medidas para mantener un nivel de vida aceptable para
estas familias y sus hijos.