Parents of children with cerebral palsy: A review of factors related to the process of adaptation

Abstract

Little is known about the way parents adapt to the situation when their child is diagnosed with cerebral palsy.
A literature search was performed to gain a deeper insight in the process of adaptation of parents with a child with cerebral palsy and on factors related to this process. The selected articles were examined with respect to (i) the type and purpose of the study, (ii) study sample, (iii) variables and instruments and (iv) results on adaptation and stress of the parents.
Twenty-two studies were found, which showed a large variety in research designs, instruments and populations. Despite methodological differences, it was possible to extract a number of factors related to resources of individual family members, the family unit as a whole and in the community, family appraisal and adaptive coping.
It is important to realize that parents' adaptation may change as a function of their child's development and changing stages of family life over time. Until now cross-sectional studies have dominated this area of research, but in order to understand the process of adaptation over time, longitudinal studies are needed.

Full text

Parents of children with cerebral palsy: a review of
factors related to the process of adaptation
I. C. M. Rentinck,* M. Ketelaar,*† M. J. Jongmans‡ and J. W. Gorter*†
*Rehabilitation Centre De Hoogstraat, Centre of Excellence for Rehabilitation Medicine
†University Medical Centre, Department of Rehabilitation, Rudolf Magnus Institute of Neuroschience, and
‡Department of Special Education, Utrecht University, Utrecht, the Netherlands
Accepted for publication 27 February 2006
Keywords
cerebral palsy, coping,
parental adjustment,
parents, psychological
stress, systematic review
Correspondence:
Ingrid C. M. Rentinck,
Rehabilitation Centre De
Hoogstraat, Centre of
Excellence for
Rehabilitation Medicine
Utrecht, Rembrandtkade
10, 3583 TM Utrecht, the
Netherlands
E-mail:
i.rentinck@dehoogstraat.nl
Abstract
Background Little is known about the way parents adapt to the situation when their child is
diagnosed with cerebral palsy.
Methods A literature search was performed to gain a deeper insight in the process of adaptation
of parents with a child with cerebral palsy and on factors related to this process.The selected
articles were examined with respect to (i) the type and purpose of the study, (ii) study sample, (iii)
variables and instruments and (iv) results on adaptation and stress of the parents.
Results Twenty-two studies were found, which showed a large variety in research designs,
instruments and populations. Despite methodological differences, it was possible to extract a
number of factors related to resources of individual family members, the family unit as a whole and
in the community, family appraisal and adaptive coping.
Conclusion It is important to realize that parents’ adaptation may change as a function of their
child’s development and changing stages of family life over time. Until now cross-sectional studies
have dominated this area of research, but in order to understand the process of adaptation over
time, longitudinal studies are needed.
Introduction
When a child with a disability is born, parents have to face their
child’s diagnosis and make adjustments in their caregiving and
in their expectations. Families of children with disabilities face
unique stressors and demands over time (Lin 2000). Evidence
suggests that there is a considerable variation in how caregivers
adapt to these stressors and demands (Raina et al. 2004). While
some parents of children with developmental disabilities per-
ceive their family situation as not very stressful, others experi-
ence life as difficult and more negative (McCubbin & McCubbin
1992).
But why do some families succeed, while others have diffi-
culty in managing the situation related to the rearing process of
the child with a disability? Interesting in this respect is the focus
on the ‘process’ of adaptation, which can be defined as ‘the
ability of a marital/family system to change its power structure,
role relationships and relationship rules in response to situ-
ational and developmental stress’ (Olson et al. 1979). Thus,
while many studies show that, in general, parents of children
with disabilities experience higher stress levels (Miller et al.
1992; Sloper & Turner 1993; Hauser-Cram et al. 2001; Smith
et al. 2001), this is not necessarily related to lower levels of
family adaptation (Cadman et al. 1991; Hauser-Cram et al.
2001).
Information about the way and the extent to which families
of children with cerebral palsy (CP) adapt to that situation is of
high importance for daily practice. If professionals are able to
identify families at risk for adaptation problems, they might be
able to provide services that are adjusted to the needs of the
Original Article doi:10.1111/j.1365-2214.2006.00643.x
© 2006 The Authors
Journal compilation © 2006 Blackwell Publishing Ltd 161

family. To gain a deeper insight in this topic, a literature search
was performed on the process of adaptation of parents with a
child with CP and on factors related to this process.
Methods
A literature search was performed using the MEDLINE and
PsychINFO databases.These databases were searched from their
date of release to the end of 2004. The Mesh or Thesaurus terms
‘adaptation’ OR ‘adjustment’ OR ‘coping’ OR ‘stress’ were used
to find articles on both the process of adaptation and the state of
stress. The second step was to search the databases using the
Mesh or Thesaurus terms ‘family’ OR ‘parent’ OR ‘social
support’. In the third step, the above results were combined with
the term ‘cerebral palsy’. Only articles in English were included.
They were examined with respect to (i) the type and purpose of
the study, (ii) study sample, (iii) variables and instruments and
(iv) results on adaptation and stress of the parents.
Results
The literature search resulted in 22 articles (see Table 1 for an
overview of the purpose, population, variables and measures of
these studies). Most of them (20) were cross-sectional studies,
in which factors related to stress, well-being and/or coping were
studied. Only two longitudinal studies were found. The results
are arranged in three categories: child-related factors, parent-
related factors, and contextual factors, i.e. related to external
support. Finally, results related to stages of family life are
described.
Child-related factors
In five studies, parents of children with CP were compared with
parents of typically developing children. In four studies, it was
concluded that mothers of children with CP experience higher
stress levels or lower levels of mental health than mothers of
typically developing children (Molteno & Lachman 1996; Ong
et al. 1998; Florian & Findler 2001; Britner et al. 2003). This
difference was not found in one study where mothers of
preterm children were compared with those of typically devel-
oping children (Lambrenos et al. 1996).When comparing stress
levels of mothers of children with CP with general population-
based norms, relative high stress levels or low levels of mental
health were found in four studies (Wallander et al. 1989;
Mobarak et al. 2000; Wiegner & Donders 2000; Manuel et al.
2003). One study concluded that the average level of parenting
stress of a group of parents of children with CP was just below
the general level of ‘clinical concern’ (Weiss et al. 1997).
Wiegner and Donders (2000) reported that parents of chil-
dren with CP experience more stress than those of children with
spina bifida and limb deficiencies. Furthermore, parents of chil-
dren with CP and health impairments seem to experience more
stress related to physical limitations than those of children with
Down syndrome (Weinhouse et al. 1992). Others did not find
differences in stress levels of mothers of children with different
kinds of disabilities (Saddler et al. 1993; Molteno & Lachman
1996).
Besides the diagnosis itself, the severity of the disability in
terms of the level of independent functioning in daily life was
found to be an important predictor of maternal depression
(Ong et al. 1998; Baird et al. 2000; Button et al. 2001).This
finding was not supported in other studies (Horton-Vensters &
Wallander 2001; Manuel et al. 2003).
Finally,various studies concluded that the presence of behav-
iour problems in the child with CP was related to parental stress
(Wanamaker & Glenwick 1998; King et al. 1999; Mobarak et al.
2000).
Parent-related factors
Personal circumstances of the parents
Mothers of children with CP seem to experience more stressful
life events than those of ‘typically’ developing children (Florian
& Findler 2001). These stressful life events were found to be
associated with poor mental health of the mother. The finding
of Ong and colleagues (1998) that not the presence of CP but
the number of hospitalizations of the child is an important
predictor of parental stress corresponds to this finding.
Some authors concluded that a low socio-economic status
and maternal education are important predictors of maternal
stress, whether the child has CP or not (Molteno & Lachman
1996; Ong et al. 1998; King et al. 1999; Mobarak et al. 2000). In
other studies, however, this finding was not supported (Lam-
brenos et al. 1996; Wiegner & Donders 2000; Britner et al. 2003;
Manuel et al. 2003).
With respect to the association between ethnicity and par-
ental stress, different conclusions have been drawn. Ong and
colleagues (1998) concluded that Chinese ethnicity was an
important predictor of parental stress in parents of children
with CP. On the other hand, Wiegner and Donders (2000) did
not find a difference in white or non-white ethnicity in relation
to parental stress.
162 I.C.M. Rentinck et al.
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Table 1. Reviewed Studies
Study Type Purpose Population Variables and measures
Baird et al. (2000) C To investigate parental satisfaction with
the diagnosis of cerebral palsy of their
child
107 parents of children with mild,
moderate, or severe CP
Child age: 14–20 months
Satisfaction with the disclosure of the diagnosis with respect to structure,
manner and information (semi-structured interview)
Demographic information (maternal education, employment status, parental
ethnicity)
Depression (Edinburgh Postnatal Depression Scale)
Coping ( ways of coping inventory)
Britner et al. (2003) C To find out whether marital functioning,
need for support, parental stress and
demographic information differs
according to child diagnosis
87 mothers of children with
severe or mild CP, or no medical
diagnosis
Child age: 14–55 months
Marital Functioning (Dyadic Adjustment Scale; DAS)
Need for support (Support Functions Scale; SFS-Short Form)
Helpfulness of Support (Family Support Scale; FSS)
Parenting Stress (Parenting Stress Index; PSI Short Form)
Button et al. (2001) C To examine male partner’s involvement in
caregiving and the relation between
the male partners’ support and
maternal parenting stress.
64 (two-parent) families raising
children with moderate or
severe CP, or no medical
diagnosis.
Child age: 15–54 months
The perceived effects of raising a young child on the task division and
coping mechanisms of parents (semi-structured Interview).
Assistance from the caregiving partner with tasks and problems (Inventory
of Social Support; ISS)
Overall helpfulness of the partners (Family Support Scale; FSS)
Florian & Findler (2001) C To investigate the relationships among
the level of stressful life events,
maternal psychological resources, and
social support networks, and their
contribution to mothers’ mental health
and marital adaptation
160 mothers of children with CP
or no medical diagnosis
Child age: 3–7 years
Stressful life events (Family Inventory of Life Events and Changes)
Mothers Self-esteem (Rosenberg Self Esteem Scale)
Self Mastery (Self Mastery Scale)
Social Support (Social Support Network List)
Psychological adaptation (Mental Health Inventory)
Familial and marital adaptation (Evaluating and Nurturing Relationship
issues Communication and Happiness Scale)
Hirose & Ueda (1990) C To investigate the reaction of parents on
the diagnosis of their child with CP,
crisis periods, social support and the
roles of both parents in raising their
child
40 parents of 28 children with CP
Child age: 22–29 years
The social, mental and physical situation of parents, the process of
acceptance and the important persons who supported parents and the
share of fathers in the raising of the child with CP (semi-structured
interview)
Horton-Vensters &
Wallander (2001)
C To test direct,moderating and mediating
effects of perceptions of hope and
social support on the
perceived stress of mothers of children
with chronic physical conditions
109 mothers of children with
spina bifida, CP or diabetes
Mean
child age: 10.6 years (not
specified)
Hope (Hope Scale)
Maternal stress (Brief symptom Inventory; BSI)
Social Support (Social Support Questionnaire; SSQ-6)
Caregiver disability-related stress (Parents of Children with Disabilities
Inventory; PCDI)
King et al. (1999) C To determine the relation between
perceptions of family-centred
caregiving and emotional well-being of
parents of children with a disability
and to determine the relative
importance of factors that might affect
well-being
164 parents of 109 children with
CP, spina bifida or
hydrocephalus
Child age: 3–5 years
Parent Emotional Well-being (Symptom Checklist-90 revised SCL-90-R,
Centre for Epidemiological Studies Depression Scale; CES-D)
Caregiving process (Measure of Processes of Care; MPOC)
Satisfaction with Care (Client Satisfaction Questionnaire; CSQ)
Demographic information (Parents’education level, employment status and
family income)
Coping strategies (Coping Health Inventory for Parents;CHIP)
Family functioning (General Functioning Scale GFS)
Social Support (Family Assessment Device; FAD; and Satisfaction with social
support; SSQ-6)
Parental adaptation in children with CP: a review 163
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Table 1. Continued
Study Type Purpose Population Variables and measures
Lambrenos et al. (1996) L To investigate differences in depression
levels of mothers of preterm children
compared with mothers of children
born a term and assess whether of
disability, actual physical prediction
disability and the presence of stressful
conditions are related to maternal
depression
96 mothers of preterm infants
with and without abnormal
brain scan or no medical
diagnosis
Child age: 12 months
Emotional disorder in the mother (malaise inventory and semi-structured
interview)
10 psychosocial adversities; for example, social class,employment of the
parents, marital relationship, housing, social contacts of the mother.
(Interview, Dyadic Adjustment Scale;DAS, demographic information)
Lin (2000) C To identify variables and relations
underlying family coping in families
with a child with CP to stages of family
life cycle
274 parents of children with CP
Child age: 0–21 years
Family coping with CP (Family Crisis Oriented Personal Evaluation Scales;
F-COPES, Coping Health Inventory for Parents; CHIP)
Family Adaptation (General Functioning scale of the McMaster Family
Assessment Device; FAD)
Family life cycle stages (Family Demographic Form; FDF)
Manuel et al. (2003) C To assess whether disability severity and
child functional status are predictors of
maternal depression and the
moderating effects of maternal
appraisal, social support and family
income
270 mothers of children with cp.
Child age: 1–18 years
Maternal social support (newly developed scale)
Appraisal of the illness situation (Impact of the Family Scale)
Maternal depression (Centre for Epidemiologic Studies – Depression; CES-D)
McCubbin (1989) C To compare single-parent and two-parent
families who have a child with CP on
the differences in family stressors,
resources, family types, coping patterns
and child health indices
27 single-parent and 139
two-parent families of children
with CP
Child age: 3–22 years
Family Stressors and Demands (Family Inventory of Life Events; FILE)
Family Resources (The Family Inventory of Resources for Management;
FIRM)
Parental Coping (The Coping Health Inventory (CHIP)
Family types; balanced, midrange and out of balance (Family Adaptability
and Cohesion Evaluation Scales (FACES-I)
Mobarak et al. (2000) C Identify the degree of stress experienced
by mothers of young children with CP
living in Bangladesh and to examine
associated child and family
characteristics
91 mothers of children with CP
living in Bangladesh
Child age: 1.5–5 years
Mother’s stress (Self-Report Questionnaire; adapted from the GHQ).
Social support (Family Support Scale; FSS)
Mother’s adaptation (Judson Scale)
Sociodemographic characteristics
Molteno & Lachman
(1996)
C To investigate maternal stress levels and
the relation between stress and the
degree of handicap, socio-economic
status, social support and race
110 African- and Coloured
Mothers of children with Down
syndrome, CP or no medical
diagnosis
Child age: <3 years
Maternal Stress (Maternal Stress Index; MSI)
Socio-economic status: income,housing density and quality of
neighbourhood (Socio-Economic Score; SES)
Social Support (Social Network Score; SNS)
Ong et al. (1998) C To compare child- and parent-related
stress and to determine associated
factors among mothers of children
with CP or no medical diagnosis
174 mothers of children with CP
or no medical diagnosis Mean
child age: 57 months (not
specified)
Child-related stress (Parenting Stress Index; PSI)
Parent-related stress (Parenting Stress Index;PSI)
Demographic and social information (ethnicity, marital status, age,
education and occupation of the parents, caregiver role, family income
and amount and duration of hospitalizations: interview)
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Piggot et al. (2002,
2003)
L To investigate the process of adaptation
of the parents related to their capacity
to participate in home therapy
programmes
8 parents and 4 therapists of
children with CP
Child age: 2–10 years
Parental perception of their family life with respect to their child with CP
and the level of involvement in a home therapy program (unstructured
interview and participant observation)
Saddler et al. (1993) C To delineate variables contributing to
adaptive family functioning; and to
investigate if visibility of a disability
might be such a variable
139 Parents of children with CP or
diabetes mellitus or no medical
diagnosis
Child age: 5–7 and 8–11 years
Family functioning (Family Functioning Index; FFI)
Impact of handicapping conditions and chronic illness on family
functioning (Questionnaire on Resources and Stress – Short Form
Adapted; QRS-SFA)
Marital Adjustment (Locke Walace Marital Adjustment Inventory; LW)
Family Social Support (Norbeck Social Support Questionnaire; NSSQ)
Wallander et al. (1989) C To document the adaptation of physically
handicapped children and their
mothers and to evaluate the
contributions of disability parameters
to this adaptation process
50 mothers of children with spina
bifida or CP
Child age: 6–11 years
Maternal Adaptation: Physical and emotional functioning (Malaise
Inventory)
Social functioning (Social and Activities Questionnaire)
Wanamaker &
Glenwick (1998)
C To explore the relationships among
depression, stress, social support,
parenting self-efficacy, and perceptions
of child maladjustment in parents of
children with CP
62 mothers and 22 fathers of 64
children with CP
Child age: 3–7 years
Parenting stress (Parenting Stress Index; PSI)
Depression (Beck Depression Inventory; BDI)
Parenting self-efficacy and parenting satisfaction (Parenting Sense of
Competence Scale; PSOC-scale)
Number of and satisfaction with social support (Social Support
Questionnaire-6; SSQ-6)
Parent’s Perceptions of child behaviour (Eberg Child behavior Inventory;
ECBI)
Weinhouse et al. (1992) C To investigate differences in degree of
stress of parents of children with
different disabilities and between
mothers and fathers
32 Parents of children with CP,
Down Syndrome or life-
threatening conditions
Child age: 0–5 years
Stress involved in caring for family members with handicaps (Questionnaire
on Resources and Stress – Short Form; QRS-SF)
Weiss et al. (1997) C To identify,describe and classify
strategies used by parents of children
with CP, in carrying out family tasks
related to childcare
Parents of 40 children with CP
Child age: 13–32 months
Parenting Stress (Parenting Stress Index; PSI)
Family’s day-to day experiences including sociodemographics, patterns of
child care, family routine, social networks, family ritual activities and
caregiver–child communication (Family interview)
Marital Satisfaction (Dyadic Adjustment Scale; DAS)
Wiegner & Donders
(2000)
C To investigate the relationship between
the level of parental stress, children ’s
daily functional status, family dynamics
and psychosocial factors in samples of
children with physical disabilities
121 parents of children with CP,
spina bifida or limb deficiency
Child age: 3–12 years
Parental Stress (Brief Symptom Inventory; BSI)
Family functioning (Family Assessment Device;FAD)
Demographic information (ethnicity, parental age, education and
occupational status, recent stressors, single- or two-parent home, birth or
adoptive home)
C, cross-sectional; L, longitudinal; CP, cerebral palsy.
Parental adaptation in children with CP: a review 165
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In a study of Lambrenos and colleagues (1996), problems
with housing, unemployment of the father, problems within
mother’s family of origin and social isolation were described as
factors associated with maternal stress. Finally, the number of
siblings, parental age and occupational status of the parents
were studied and found not to be related to parental stress
(Wiegner & Donders 2000).
Parents’ assets and emotional resources
Only a few articles focused on inner psychological resources of
parents of children with CP. In these studies, positive associa-
tions have been found between these resources and the experi-
enced levels of well-being and adaptation to the parental role
(King et al. 1999; Lin 2000; Florian & Findler 2001; Horton-
Vensters & Wallander 2001).
Horton-Vensters and Wallander (2001) found both a direct
and moderating effect of hope on parental stress. Hope was
defined as a cognitive set that is based on a sense of goal-
directed determination and planning ways to meet these goals.
Both self-esteem and self-mastery were investigated in rela-
tion to parental stress of parents of children with and without
CP. It was concluded that the level of self-esteem plays an essen-
tial role in mothers’ adaptation to the rearing process, regardless
whether the child has a developmental disability or not (Florian
& Findler 2001). Self-mastery, defined as the confidence in the
ability to influence or control the forces affecting life, was lower
in families with a child with physical disabilities (Florian &
Findler 2001).
Finally, a positive attitude towards the situation associated
with the child with CP and spiritual support were described as
being an effective coping style in relation to parental well-being
(Lin 2000).
Differences between fathers and mothers
In three studies, differences between mothers and fathers in
terms of experienced burden, experienced stress or emotional
reactions have been studied (Hirose & Ueda 1990; Weinhouse
et al. 1992; Wanamaker & Glenwick 1998).
In one study,no differences were found between mothers and
fathers of children with CP with respect to experienced levels of
stress, but mothers experience more parent-related stress, while
fathers experience more child-related stress (Wanamaker &
Glenwick 1998).
In the other two studies, it was found that mothers experience
a greater personal burden than fathers do (Hirose & Ueda 1990;
Weinhouse et al. 1992). Mothers seem to be more emotional in
their reactions, while fathers are more objective and realistic.
And mothers seem to seek comfort and advice from other
mothers, while fathers tend to keep their problems to them-
selves (Hirose & Ueda 1990).
Family functioning
There are indications that both in families of typically develop-
ing children and in families of children with CP, there is a
similar traditional family pattern. This means that the major
part of raising a child is carried out by the mothers (Hirose &
Ueda 1990; Weiss et al. 1997; Button et al. 2001).
Marital functioning seems to be a buffer with respect to
parenting stress (Saddler et al. 1993), which is probably not
different for parents of children with CP compared with parents
of typically developing children (Britner et al. 2003). Wiegner
and Donders (2000) found that it is the parents’ perceptions of
unequal role distribution with day-to-day tasks that may lead to
feelings of being over-burdened.
Two studies reported that spouses are the most supportive
persons for both parents of children with CP (Hirose & Ueda
1990; Weiss et al. 1997). In these studies, it was found that the
way spouses are supportive is not per se related to the involve-
ment of care or to the severity of the disability of the child.
Moreover, there are indications that the level of maternal stress
can be higher when partners are much involved in the care of a
child with severe CP (Weiss et al. 1997; Button et al. 2001).
Two studies investigated the differences between single-
parent and two-parent families (McCubbin 1989; Wiegner &
Donders 2000). These authors did not find that single-parent
families experience higher stress levels than two-parent families
with a child with CP. Nevertheless, whereas single-parent fami-
lies may be more adaptable and flexible in response to situ-
ational stress, they may also have more difficulty engaging in
activities with their child with CP than two-parent families.
Single-parent families are also less optimistic about their overall
family situation. Different factors related to the child with a
handicap make single parents more financially vulnerable
(McCubbin 1989).
Contextual support
Social support
There are indications that the need for social support and the
experienced helpfulness of support is not different for parents
of children with CP, compared with parents of typically devel-
oping children (Britner et al. 2003). The studies included in this
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review that have focused on the role of social support in relation
to parental stress reported that both social network size
(Wiegner & Donders 2000; Florian & Findler 2001; Horton-
Vensters & Wallander 2001) and the satisfaction with social
support (Molteno & Lachman 1996; Wanamaker & Glenwick
1998; King et al. 1999; Horton-Vensters & Wallander 2001;
Manuel et al. 2003) are positively related to mental health of the
parents. In only one study a relationship between social support
and maternal stress was not confirmed (Mobarak et al. 2000).
Support from professional services
With respect to the way parents were involved in formal support
services, it was found that family-centred care was an important
predictor for parents’ emotional well-being and their satisfac-
tion with formal support services (King et al. 1999).
One study reported on parents’ perceptions of the disclosure
of the diagnosis by professionals. In this study, the content of
the information given to the parents, the manner and timing of
telling, and the severity of the diagnosis, were related to satis-
faction with the disclosure of the diagnosis, which in turn was
related to depression of the parents (Baird et al. 2000).
Stages of family life
Five studies provided information about aspects related to
parental experiences over time. The study of Hirose and Ueda
(1990) described stressful periods for both parents. They found
indications that mothers have their most stressful period during
the child’s infancy, and fathers during the child’s toddlerhood,
school age and adolescence.
Piggot and colleagues (2002, 2003) described two phases that
parents usually go through when their child is diagnosed with
CP. The first phase is characterized by a strong grief when parents
are confronted with the fact that their child is not developing
typically and life would present ongoing struggles for them and
for their child. The first reaction for parents is one of shock, and
to keep going and provide for the child and family needs, parents
use survival strategies. In the second phase, parents experience a
desire to help their child to function as normal as possible, and
this desire is a strong motivator to participate actively during
therapy. Such a focused action helps parents in seeking out as
much information as they can, and helps them in learning tasks
to promote their child’s development and in practising activities.
In this context, Lin (2000) found that families with infants and
preschoolers seemed to use more coping behaviours related to
increasing knowledge on CP and seeking more external
resources than families with young adults. Parents of children
with school-aged children appeared to be using more coping
behaviours related to a positive attitude toward the situation,
called positive family appraisal, and had better positive social
interactions than families with young adults.
Discussion
This review focused on the process of adaptation of parents
raising a child with CP and on the factors that are related to this
process.
Looking at the current literature, we conclude that there is a
lack of consensus about terminology. Important concepts such
as adaptation, family functioning, parental well-being and
social support are not clearly defined in the different studies.
This review also revealed a large variety in populations studied
and measures used to investigate the process of adaptation,
for example, self-devised questionnaires, and structured and
unstructured interviews. This variation makes it difficult to
compare the results of the different studies and to gain an
insight in the relation between variables.
The literature reviewed revealed only scarce information
about the process that the parents might go through following
the period in which their child was diagnosed as having CP. This
is due to the fact that only two studies followed mothers and
their child over a period of time (Hirose & Ueda 1990; Piggot
et al. 2002, 2003),while the other studies applied cross-sectional
designs. However, it is conceivable that parents’ perceptions or
strategies to cope with raising a child with CP can change over
time. Moreover, due to the changing developmental stages of
the child and changing family resources, parents with a child
with CP often face difficulties during different life stages (Hirose
& Ueda 1990).
Although information on the process of adaptation of
parents of children with CP is lacking, a large number of factors
related to parental stress or parental well-being are reported in
the literature. In our opinion, the bio-ecological model on
human development conceptualized by Bronfenbrenner and
Morris (1998) can help to categorize these different factors. This
bio-ecological model comprises different levels of functioning.
The studies in this review mainly explore aspects of the
so-called Microsystem, consisting of possible mechanisms
mediating caregiver health, and the Mesosystem, consisting of
other systems in which the family lives and the influences of
these systems on familial caregiving practices.
At the level of the Microsystem, physical limitations, often in
combination with behavioural problems, can make parents
more physically tired than mothers of children with other
disabilities (Weinhouse et al. 1992). With respect to resources
Parental adaptation in children with CP: a review 167
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parents use to deal with a stressful situation, it is suggested that
a positive and goal-directed attitude of the parents that is char-
acterized by problem-solving strategies can be seen as a more
effective coping style in stressful situations than emotion-
focused strategies. This suggestion is also described in other
literature on stress in families of children with disabilities
(Knussen & Sloper 1992; Miller et al. 1992; Sloper & Turner
1993). Because the prognosis of the child’s development is often
not clear when the child is first diagnosed as having CP, it might
be more difficult for parents to develop or use a single problem-
solving coping style. Although much of the research has been
from the mother’s perspective, there are some indications that
the role of fathers should not be denied.
At the level of the Mesosystem, social network size (Wiegner
& Donders 2000; Florian & Findler 2001; Horton-Vensters &
Wallander 2001) and satisfaction with social support (Molteno
& Lachman 1996; Wanamaker & Glenwick 1998; King et al.
1999; Horton-Vensters & Wallander 2001; Manuel et al. 2003)
were found to be positively related to mental health of the
parents. The presence of supportive environments might
improve parents’general dispositions, assists them in feeling less
overwhelmed by parenting tasks, and allows them to have addi-
tional resources from which to draw information. Supportive
social networks can reduce stress by serving as a buffer against
threatening events, influencing coping strategies of parents and
providing emotional support. In contrast, when a conflict arises
among members of the family, or when there is an overload of
information and interaction, networks can contribute to stress-
ful situations for parents (Osofsky & Thompson 2000).
In summary, adaptation is a not a single event but a multi-
factorial determined process over time. One can imagine that in
different developmental stages of family life, parents of children
with CP have specific questions and worries. Professionals
should be more aware of the parental burden and parental
coping abilities in order to estimate the needs of the family and
to identify families at risk for adaptation problems. To gain a
deeper insight in the adaptation process of parents of children
with CP, it is essential to examine important factors jointly in
the context of daily life and to realize that experiences of parents
can change over time. Therefore, longitudinal studies on the
impact of CP on the family are needed.
Acknowledgements
This study was funded by the Netherlands Organisation
for Health Research and Development ZonMw (Project
number 1435.0011), ‘Johanna Kinder Fonds’ and ‘Stichting Bio
Kinderrevalidatie’.
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