Parental experience
Annotation
of participation in
physical therapy for
children with physical
disabilities
Lucres MC Jansen PhD, Institute for the Study of Education
and Human Development (ISED) Utrecht and the School of
Education, Utrecht University;
Marjolijn Ketelaar PhD, Rehabilitation Center ‘De
Hoogstraat’;
Adri Vermeer* PhD, Institute for the Study of Education and
Human Development (ISED) Utrecht and the School of
Education, Utrecht University, the Netherlands.
*Correspondence to last author at ISED, Utrecht University,
Heidelberglaan 1, 3584 CS Utrecht, the Netherlands.
E-mail: A.Vermeer@fss.uu.nl
In the current practice of physical therapy for children with
chronic physical disabilities, more and more attention is paid
to parental participation. In the past, physical therapy was
mainly impairment oriented, with supposed effects on the
daily functioning of the child. It was the exclusive domain of
therapists and physicians. Parents were usually not involved
in the therapy for their children. It was not until recently that
physical therapists became more aware of the possible role of
parents. In the early 1980s an important development in this
area started. The role of parents changed from a passive one
into an active participating one. Parents became a sort of co-
therapist, meaning that while therapists decided on the treat-
ment goals and methods, parents were expected to perform
the treatment activities at home in cooperation with the treat-
ment activities of the therapist in the clinic.1,2 Since then, the
discussion about the optimal role of parents in the physical
therapy of their children has continued.3,4,5 This discussion
has resulted in the current belief that parents should be
actively involved, and should be working with therapists as
equal partners in deciding the goals and content of the physi-
cal therapy for their children.6,7
There are two main arguments for involving parents in
the physical therapy of their children. The first argument
involves child functioning. In order to transfer physical ther-
apy in the rehabilitation centre to the daily functioning of the
child, it is important to introduce therapy activities into daily
practice. Parents can play a crucial role in this transfer. The
second factor is the effect this has on the role of the parent.
Parents who participate in the physical therapy for their chil-
dren with disabilities are likely to develop more insight into
the impairments and abilities of their children, resulting in a
more realistic view of their child’s potential in terms of daily
58 Developmental Medicine & Child Neurology 2003, 45: 58–69
functioning. Moreover, by participating in therapy, parents
can become more adept at taking care of their child.
Eventually, this increases parents’ confidence in their own
competence and reduces parental stress.8
In most research on the effects of parental participation
until now, attention has focused on one aspect of parental
participation. Almost all studies focus on the effects of
parental participation on child functioning. On the basis of
these studies, the positive effects of parental participation on
child-related outcome variables are now generally acknowl-
edged.9
However, another aspect of parental participation, parent
functioning, has received relatively little attention. Research
on this aspect of parental participation is needed because,
although parental participation is generally thought to have
positive effects on parents, negative effects may also occur.
Involvement in physical therapy for their children may also
become an extra stress factor for parents who already have to
deal with the difficulties of raising a child with physical
disabilities. Therefore, the present literature review was per-
formed in order to gain more insight into the current knowl-
edge of the experiences of parents who participate in
physical therapy, and the effects that such participation has
on them.
Review of the literature regarding the effects of parental
participation on parents
A literature search on the effects of parental participation in
physical therapy on parents found 21 articles published
between 1980 and 2000. Only studies in which parental
experiences or the effects on parents of the physical therapy
for their children with physical disabilities were included. As
this aspect of parental participation has received relatively
little attention in the literature until now, we deliberately
chose very broad criteria for the selection of the studies for
this review, including some studies in which (part of) the
therapy used might not be strictly limited to the profession of
physical therapy (e.g. infant stimulation, parent instruction
groups, or programmes like conductive education – a pro-
gramme not limited to physical therapy only).
The 21 articles found cover 18 different studies, as some
studies were reported in two articles. An overview of the
main findings of these studies and the AACPDM levels of evi-
dence are given in Table I.
STUDIES COMPARING THERAPIES WITH MORE OR LESS PARENTAL
PARTICIPATION
Of the 18 studies found, 10 were designed to compare two
therapies with more or less parental participation. However,
these studies differed greatly in methodology, content of
parental participation, and in the measures used to deter-
mine the effects on parents.
In only one study, the same therapy with and without
parental involvement was compared. Short10 studied gait
training with the parents present (parent–child oriented) and
without the parents present (therapist oriented). According to
a questionnaire and informal communication, parents were
positive about the parent–child programme. They noted that
the greater involvement had made them more confident and
better able to cope with their children’s resistive behaviours.
Also, in only one study by Law and colleagues11,12 a direct
comparison was made between two groups differing in the
intensity of parental participation. Differences in effects on
parents between regular and intensive neurodevelopmental
therapy (NDT) programmes were measured by the compli-
ance of parents with the therapy. No differences in compli-
ance between the regular and intensive groups were found,
which indicates that the intensive NDT programme was not
found to be too demanding. Unfortunately, no measure was
used to investigate the parents’ experience of the pro-
gramme nor what the effects were on parents’ well-being or
feelings of competence.
Two different research groups have compared home pro-
grammes with standard care.13–15 Generally, home programmes
involve more parental participation than standard-care pro-
grammes, but the actual content of the home programmes
and the method and amount of parental participation is not
clearly described in these papers. Mayo13 studied the effects
of a very basic form of home care. She compared a group of
mothers who received a home visit with a group of mothers
who did not receive a home visit. Again, effects on mothers
were only measured on compliance. She found a trend for
more compliance in mothers who did receive a home visit.
However, differences were not significant, and no results on
the experiences of parents with this home visit were men-
tioned. Also, it was not clear whether the home visit resulted
in better communication between therapist and parents, or
that the physical therapy was adapted to the home situation,
which may have explained the increased compliance after
the home visit. Stein and Jones Jessop,14 on the other hand,
do show results on specific measures of parents’ satisfaction
with care and well-being of the mothers. They compared par-
ents in a paediatric home care (PHC) programme with par-
ents in a standard care programme. The PHC programme
included: monitoring the child, delivering direct services,
teaching therapeutic programmes to the family and child,
coordinating services, child advocacy, health education, and
support. It was found that parents in the PHC programme
were more satisfied with the care and that psychiatric symp-
toms of mothers in the PHC programme were reduced more
than in the standard care programme. The psychiatric symp-
toms measured were symptoms like anxiety and depression,
anger/hostility, and somatization, that occur frequently in
non-patient samples. However, the presence of psychiatric
symptoms still seems a very gross measure for studying effects
of a home care programme for children on their parents.
Fortunately, about 7 years later, Jones Jessop and Stein15 pub-
lished an article in which they analyzed the results of the same
study in more detail. This is also a very good illustration of
the increase in interest of researchers on the effects of
parental participation on parents. In the article published in
1991, they stratified the original study sample into four
groups, according to high or low coping resources of the
family and high or low illness burden. All groups, except the
high coping/high illness burden group showed greater satis-
faction with care in the PHC programme than in the standard
care programme. However, when looking at the children’s
functional status and the impact on the family, it appeared
that the group with low coping resources and low illness bur-
den benefited most from the home care programme. There
were no differences between PHC and standard care when
the illness burden was high, while for the group with high
coping resources and low illness burden the standard care
programme was even more beneficial. Thus, these two arti-
cles together clearly show that although a home care pro-
gramme with more parental involvement might be found to
have more beneficial effects overall, this might not be true for
every parent group. There can be large differences in effects
of the programme on basis of initial parent and child charac-
teristics. When taking these characteristics into account, it
might even be found that some parent groups are even better
off with a standard care programme.
In most studies, two different therapies were compared
which also differed in the amount of parental participation.
The fact that the content of the therapy was also different,
makes it difficult to separate the effects of parental participa-
tion from other effects.
Catanese and Reddihough16,17 have studied the effects of
a conductive education (CE) programme: a programme that
was based on principles of the Hungarian Peto method. In
this programme, physical therapy is a group therapy that is
integrated within a school programme. The CE programme
also focuses on the functioning of the child within the family
and social environment. However, it is not clear how the fam-
ily and social environment are involved in this therapy. In the
study by Catanese and coworkers,16 a trend was found for a
decrease in parent and family problems as measured with
the Questionnaire on Resources and Stress (QRS) in the CE
group, compared with the standard care group. The authors
explain this finding by stating that it is possible that parents
within the CE group had more opportunities to interact
together and provide each other with a more defined sup-
port network than in the control group, because children in
the CE group all went to the same institute and parents
would meet there. However, in the control group a substan-
tial number of children had commenced study at different
Annotation 59
schools, which diminished opportunities for parents to meet
and participate with each other. This might indicate that the
decrease in QRS stress scores in the CE groups was more
related to the opportunity for parents to interact together
when their children go to the same institute, than to the con-
tent of the CE programme. This hypothesis is supported by
the findings of Reddihough and colleagues17 on the same CE
programme in a larger sample of only preschool children, for
which there was no difference in the amount of contact
between parents. Although they report a higher improve-
ment in cognitive function in the CE group than in the con-
trol group, they could not replicate the differences in
parental QRS measures of Catanese.16 The authors suggest
that the lack of difference between the CE and control group
in the more recent study might be due to randomization, as
in the study by Catanese and colleagues children were not
randomized, which may have favoured the CE programme.
However, in the study by Reddihough and coworkers17 a
group of non-randomized children and their parents were
measured as well. In this sample also, no difference between
the CE group and the control group was found on the QRS.
Therefore, it is not likely that CE in itself has any positive

Table I: Overview of studies on the effects of parental participation on parents, published between 1980 and 2000

Author Participants and Treatments Measures

Children Parents Children Parents

A. STUDIES COMPARING THERAPIES WITH MORE OR LESS PARENTAL PARTICIPATION

Mayo (1981)13 18 children with delayed
motor development,
3–31 mo
home visit vs no home visit
Stein (1984)14 219 children with diverse
chronic conditions, 0–11 y
Paediatric home care vs
standard care. Evaluation
at 0, 6 mo, and 1y
Jones Jessop (1991)15 – –
Mothers given Developmental age/ Compliance with the
prescriptions and chronological age programme (remaining
demonstrations of (Milani-Comparetti treatment supplies)
programme. At last visit, and Gidoni scale)
at home or at the
department, mothers
received a list of activities
to carry out daily at home
for a month
Parents received teaching Clinician’s Overall Judged Ability to Cope
about their child’s Burden Index Satisfaction with Care
condition, and training Child’s psychological Psychiatric Symptom Index
in self-care skills adjustment. Functional Impact on Family Scale
Status measure. Personal
Adjustment and Role Skills
– –

Palmer (1988,1990)21,22 48 infants with cerebral Parents were trained in
palsy, 12–19 mo. the daily administration
6 mo infant stimulation of the programme at home.
(learning games) followed Treatment goals and
by 6 mo physical therapy therapy procedures were
vs 12 mo NDT reviewed biweekly with
the parents
Hanzlik (1989)18 20 infants with 1 hour of maternal
cerebral palsy, 8–32 mo instruction on verbal and
non-verbal maternal and
infant behaviour vs
1 hour NDT
Infant Temperament Home Observation for
Questionnaire Measurement of the
Environment (HOME).
Mother–Child
Relationship Evaluation
Gross Motor Development Maternal Observation
(Milani-Comparetti and Interview. Hollingshead
Gidoni scale). Four-Factor Index of
Bayley Scale of Mental Social Position. Recordings
Development of maternal and infant
behaviour

60 Developmental Medicine & Child Neurology 2003, 45: 58–69

effects on parents’ well-being.
Hanzlik18 compared 1 hour of maternal instruction on ver-
bal and non-verbal maternal and infant behaviour with 1 hour
of NDT-based occupational therapy. Effects on mothers were
only studied on maternal behaviour in relation to her child
and there was no measure on maternal well-being nor mater-
nal experience with the instruction programme. It was found
that mothers in the maternal instruction group showed more
positive initiations, responses, and more face-to-face contact
compared with the NDT group, which may indicate a more
positive interaction between mother and child.
Ketelaar compared a functional approach of physical ther-
apy with a standard physical therapy programme based on
neurophysiological principles.19,20 The functional therapy
was characterized by the involvement of parents in setting
therapy goals and evaluation of these goals. Moreover, these
goals were formulated in terms of functional daily activities,
while in the reference group goals were mostly formulated in
terms of impairments. In both groups, parents were expect-
ed to carry out therapy activities at home. It was found that
parents in the functional therapy group were better able to
carry out the home programme than parents in the control

Table I: continued

Results AACPDM
Children Parents Level of Evidence

Developmental level of Trend for higher I

children in the home visit compliance in the home
group increased more visit group (not significant)
than in the control group

Home care program Home care programme I

improved children’s improved satisfaction
psychological adjustment with care and psychiatric
symptoms of mother

Children with low burden Parents from children

from families with low with low burden and with
coping resources had most low coping resources had
benefit from paediatric most benefit from the
home care programme home care programme.
(functional status, Parents from children with
psychological adjustment) low burden and high
coping resources were
better off with standard care.
Regardless of burden,
home care was better for
those with low coping
resources
No differences between Only emotional and verbal I
experimental groups responsivity of the mother
(HOME) differed between
experimental groups, with
greater improvement in the
NDT group than in the
experimental group
Infants from the Less directive physical I
experimental group were guidance in experimental
more responsive to their group, more positive
mothers. Responses were initiations, responses,
voluntary and not physically face-to-face contact, and
directed by mothers use of adaptive seating.
Non-verbal instructions
were more effective than
verbal instructions

Annotation 61
group. Moreover, parents in the functional group felt more
competent in parenting. This may be explained by the fact
that parents were more equally involved in goal setting and
evaluation of the goals.
Palmer21 has studied differences between 12 months of
NDT and 6 months of infant stimulation followed by 6
months of physical therapy. For both therapies parents had
to administrate daily treatment in the home. The protocols
were designed to provide an equal amount of outpatient
professional contact and home implementation. It was 2
years before the author published findings of the parental
measures in this study.22 Again, this delay in reporting on
parental measures is indicative of the increase in researchers’
interest in the effects of parental participation on the parents
during this period. As occurred in the reports of Stein and
Jones Jessop,14,15 Palmer measured mother–child relation-
ships and environment measurements. He found a differ-
ence after 12 months of therapy in maternal responsiveness
in favour of the NDT group. However, the difference was
small and probably was not clinically meaningful. Thus, with
the same amount of home implementation activities for the
parents, there seems to be no difference in the effects of the
different contents of the home programmes on the parents.
Finally, in one study, two different therapies were com-
pared in two different diagnostic groups. Sarimski and
Hoffmann23 compared mothers of children with cerebral palsy
(CP) with mothers of children with learning disability. The
mothers of children with CP conducted daily physical thera-
py (Vojta) at home, while the mothers of children with learn-
ing disability did not. Each mother was asked to complete

Table I: continued

Author Participants and Treatments Measures

Children Parents Children Parents

Short (1989)10 46 children with Therapist oriented Distance walked in 10 Mothers’ affective
cerebral palsy (19), training without parents min on a level surface response to the training
myelomeningocele (20), present. Parent/child and the number of verbal (questionnaire)
and other physical oriented training with and physical prompts
disabilities (7), 18mo–4y. parents present at all given by the mother.
Therapist-oriented gait training sessions. Distance walked was
training (10d, 4h/d) vs converted to a value
parent-/child-oriented gait reflecting the average
training (5d, 4h/d) effect per day: efficiency
index (EI)
Law (1991, 1993)11,12 72 children with Parents had to carry out Hand function (Peabody Compliance with the
cerebral palsy, 18 mo–8y therapy activities at home: Fine Motor Scales). home programme
Regular NDT vs 30min daily for the Quality of Upper-Extremity (questionnaire and
Reg. NDT + casting vs intensive therapy and movement. logbook)
Intensive NDT vs 15 min three times a Range of motion at
Int. NDT + casting week for regular NDT wrist (goniometer)

Sarimski (1993)23 25 children with
cerebral palsy in daily
intensive physical therapy
(Vojta). 25 children with
learning disability
Catanese (1995)16 34 children with
(see also Reddihough cerebral palsy, 4–7y.
199817) 17 conductive education
group. 17 control group
Reddihough (1998)17 66 children with
(see also Catanese cerebral palsy, 12–36 mo.
199516) Conductive Education vs
control programme
(34 randomized,
32 not randomized)
Ketelaar (1999)19,20 55 children with mild or
moderate cerebral palsy, 2–7y.
28 functional therapy vs
27 regular therapy
Mothers had to conduct Infant Characteristics Attitude toward Child
physical therapy with their Questionnaire Questionnaire.
cerebral palsy children. Coping with Problems
Mothers were not Questionnaires
under the stress of
conducting therapy
Conductive education Motor and functional Questionnaire on
(CE) more focused on progress, Vulpe Resources and Stress
functioning in Assessment Battery (QRS-F)
family/society (VAB).Cognitive ability
CE more focused on VAB. Gross Motor Questionnaire on
functioning in Function Measure. Resources and
family/society Reynell Developmental Stress-short form.
Language Scale (QRS-F, adapted to a
5-point Likert scale).
Parenting Stress Index
Active involvement of Gross Motor Function Ability to carry out
parents in functional Measure. the home programme
therapy (in goal setting, Pediatric Evaluation of (Cadman scale). Parenting
decision making, Disability Inventory and perception of
implementation in daily (PEDI) parenthood (Janssen)
life, evaluation of
goals, etc.)

62 Developmental Medicine & Child Neurology 2003, 45: 58–69

questionnaires on their child’s temperament, parental atti-
tudes, and on how they coped with everyday problems.
Researchers concluded that mothers who were conducting
therapy at home showed compensatory coping processes:
i.e. mothers doing therapy compensated for their child’s
stress by becoming overprotective. However, it is extremely
difficult to conclude that this is the effect of conducting ther-
apy at home, as the children of mothers in the control group
also had totally different impairments.
STUDIES ON THE EFFECTS OF ONE SPECIFIC THERAPY ON PARENTS
In some studies, no direct comparison between two differ-
ent therapies was made, but the experiences of parents with
a specific therapy were studied. Most of these studies focus
on parental experiences with home treatment programmes.
Parette and colleagues24 studied parents of children with
CP or severe motor delays before and after 6 months of NDT.
Parents were expected to implement management strategies
in daily life. Besides motoric gains of the children, the hours
of parental participation and the degree of involvement of
the parents were also measured. Unfortunately, only correla-
tions between the parental measures and the motor gains of
the children were given: motoric progress was correlated
with hours of parental participation and degree of involve-
ment of the parents after the 6 months of NDT. It is not men-
tioned whether or not the degree of involvement changed
during the 6 months of NDT. This is illustrative of the way
researchers looked at parental participation in this period: they
were mostly interested in the direct effects of parental partici-
pation on the children and not in the effects on parents.

Table I: continued

Results AACPDM
Children Parents Level of Evidence

Trend for more gain in Parents indicated a I

walking distance per day positive reaction to the
(EI) in the parent/child parent/child training.
training group However, some mothers
reacted to the increased
performance demands
with apparent avoidance
behaviours

No differences between No differences in I

intensity of therapy. compliance between
Some additional effect regular and intensive
of casting after 6 mo NDT. Parental reports
but not after 9 mo. of compliance predicted
Gain in hand function was gain in hand function
related to compliance of better than therapist’s
parents reports of compliance
– Mothers conducting III
therapy (CP group) tried
to compensate for their
children’s stress by
being overprotective

Greater motor Fewer parent and family II

improvement in CE group problems in CE group

CE more improvement on Slight increase in QRS-F II

cognitive function scores, but no difference
between groups.
No significant difference
on parenting stress

Children in the functional Parents in the functional I

group showed more group were better able
improvement in daily to carry out the home
functional scales of the programme and felt more
PEDI than children in the competence in parenting
regular therapy group than parents in the
regular therapy group

Annotation 63
 In a study by Von Wendt et al.25 parents conducted almost
all therapy at home. The therapy parents had to perform was
physical therapy based on the principles of Bobath and Vojta.
In contrast to Parette, Von Wendt did describe the parental
measures separately. However, his focus was also not so
much on the parents’ well-being, but on their ability to per-
form the therapy for their children. He found that only a few
parents reported difficulties in performing the treatment at
home. He concluded that, as long as close supervision and
adequate economic and emotional support were provided,
parents were not over strained by the programme.
In 1991, Hinojosa26 performed a qualitative study on
mothers’ perceptions of home treatment for their children
with CP, by performing interviews with eight mothers. Each of
these mothers had been involved or had attempted to use a
home treatment programme. Almost all mothers admitted
that they did not perform the whole home treatment pro-
gramme. Usually, the full home treatment programmes were
perceived as too demanding for mothers, their children, and
their families. Mothers only selected those activities that were
easy to implement into their daily routines and that were not
stressful for them, their children, or their families. Thus, per-
formance of home treatment programmes seems to be highly
dependent on the way the mothers perceive the home treat-
ment activities and whether or not the home treatment activi-
ties are easy to incorporate into daily family life.
Brinker,27 on the other hand, did not study a home treat-
ment programme, but a weekly early intervention pro-
gramme that consisted of a child-focused transdisciplinary
intervention in which mothers worked with their children
under guidance of a professional team. These child-focused
sessions were followed by a parent support group session
dealing with parental needs, and stress associated with par-
enting a child with disabilities, as well as providing informa-
tion on their child’s problems. Moreover, Brinker looked at
parental well-being in more detail than had been done in
earlier studies. He studied the relation between maternal
stress and the development of their infants in families with
middle and low socioeconomic status (SES). He found a
complex interaction between these factors. Maternal stress
decreased after the home programme only in families with
middle SES and children with an initial low mental develop-
ment index (MDI) score, who showed low attendance to the
programme. The other groups showed no change in stress
scores. However, according to children’s mental age scores,
the children of these low-stress mothers from middle SES

Table I: continued

Author Participants and Treatments Measures

Children Parents Children Parents

B. STUDIES ON THE EFFECTS OF ONE SPECIFIC THERAPY ON PARENTS

Parette (1984)24 10 infants with cerebral palsy (CP) Parents had to implement Bayley Scales of Infant Degree of Involvement
or severe motor delays, 5–24 mo physical management Development (motor Instrument. Number of
6 mo of NDT strategies and mental) hours parents spent on
working with their child.

Von Wendt (1984)25 49 motor disabled children Parent-centred – Social background,

(28 CP, 17 motor delay, physiotherapy. disablement of the child,
4 myelomeningocele), 3–9y Physiotherapists act problems with
mainly as instructors and performance of therapy
supervisors of daily physical (questionnaire)
treatment (Bobath, Vojta)
which is performed primarily
by the parents
Hinojosa (1991)26 8 children with CP, 2–5 y. Mothers were expected to – Interview about
home-programmes implement the programme home-programme
in daily life

Brinker (1994)27 148 infants with disabilities 72 low socioeconomic
(33% CP). Weekly early status (SES) families.
intervention programme 72 middle SES families
Mothers had to work with
their child during sessions
and attended a parent
support group
Mental Age and Mental Attitude Towards Child
Development (Bayley Scale) Scale (stress). Attendance
at the programme. Number
of formal support
agencies

64 Developmental Medicine & Child Neurology 2003, 45: 58–69

families benefited the least from the early intervention pro-
gramme. Actually, their MDI score decreased, probably
because of the low attendance to the programme. Children
from mothers with low stress from a family with low SES on
the other hand, did benefit from the programme, especially
when the attendance was high. However, the amount of stress
of the mothers of these children did not decrease. This study
shows that the interaction between maternal stress, SES, and
the effectiveness of home programmes is rather complex. Low
maternal stress levels and better financial coping resources
(middle SES) do not necessarily mean that mothers are willing
and able to attend the therapy programme, nor does it mean
that children of these mothers benefit most from such pro-
grammes. Actually, children from low SES families appear to
benefit most from such programmes.
STUDIES OF THE EFFECTS OF REGULAR THERAPIES ON PARENTS
Finally, some studies only report on parental experiences
with regular therapies. Although these studies do not focus
on parental participation alone, they are interesting for this
review in that they show which characteristics of physical
therapy parents value, or which factors predict parental
well-being.
Miller28 compared mothers of children with disabilities with
mothers of children without disabilities. He found that moth-
ers of children with disabilities showed more depressive symp-
tomatology. He also found that an emotion-focused coping
style of the mothers was related to high stress levels, while
problem-focused coping was related to low stress levels.
However, the most interesting part of this study for the present
review is that Miller asked parents to describe the most stress-
ful situations related to their children with disabilities.
Surprisingly, about 33% of the stressful situations that were
described involved the medical facility and/or medical profes-
sionals, which was more than the amount of the stressful situa-
tions that involved home, school, or family. Thus, treatment
appears to be one of the most common stress factors for moth-
ers of children with disabilities. Sloper,29 in her study on ser-
vice needs of families of children with severe physical disability,
showed that a considerable part of the unmet needs of families
had to do with the provision of information. She also showed
that families with the highest level of unmet needs also had the
highest stress levels. King30 supports this finding in her litera-
ture review: information exchange appeared to be strongly
associated with general satisfaction as well as with care and
with adherence to the therapy. Another factor that seemed very

Table I: continued

Results AACPDM
Children Parents Level of Evidence

Bailey motor gains – IV

correlated with age.
Hours of parental
participation and degree
of involvement were
significantly correlated
with Bailey motor gains
– Only few parents reported IV
difficulties in performing
the treatment. Parents
were not overstrained as
long as close supervision
and adequate economic
and emotional support
were provided
– Mothers selected only IV
some activities the
therapist suggested. These
activities were enjoyable
and non-stressful for the
child, mother, or family
Mental development was Maternal stress was IV
not related to maternal related to interaction
stress itself, but an between initial stress,
interaction between attendance, and SES.
maternal stress, attendance Frequency of attendance
and SES was present. to the programme was
Programme was most negatively related to
beneficial for children stress, but number of
from low SES families with agencies was positively
low stress related to stress

Annotation 65
important was respectful and supportive care. Respectful and
supportive care was related to both adherence to therapy and
to reduced stress. Moreover, it was the factor that was most val-
ued by the parents. In a later study,31 King changed her focus
towards the interaction between parent and child measures.
Just as in the study by Brinker,27 this approach resulted in a
complex interaction between stress and coping resources of
the parents and child functioning. However, three main find-
ings can be distilled: (1) family-centred caregiving predicted
the parents’ emotional well-being, low parental stress, and
high satisfaction with services; (2) the most important predic-
tor of parental well-being was a low score on child behaviour
problems; and (3) family functioning and social support pre-
dicted parents’ well being.
Implications for practice
Current literature on the subject is sparse and methodological-
ly too varied to be able to make any clear-cut recommendations

Table I: continued

Author Participants and Treatments Measures

Children Parents Children Parents

C. STUDIES ON THE EFFECTS OF REGULAR THERAPIES ON PARENTS

Miller (1992)28 Regular therapy in a
metropolitan rehabilitation
hospital or local outpatients
occupational treatment centre
69 mothers of physically – Family Support Scale
disabled children vs 63 Ways of Coping
mothers of non-disabled Questionnaire (WOC).
children Appraisal Components.
Brief Symptom Inventory.
Sickness Impact Profile (SIP)

Sloper (1992)29 107 children with severe Families of 107 children
motor disabilities (40% with severe physical
cerebral palsy [CP]), 6 mo–13y. disability (105 mothers
Various regular therapies and 2 fathers)
within the Manchester area
Questionnaire, Survey of
Self-Sufficiency Checklist
King (1996)30 – 128 couples (mothers
and fathers ) with a child
with physical impairments,
recruited from 13 children’s
ambulatory treatment
centres. Parents were asked
about their experiences with
their child’s therapy and
especially about their
relation with the therapists
Severity of physical Perceived Needs Scale.
disability and learning Eysenck Personality
disability. Behaviour Inventory and Brief
Problem Index, Locus of Control Scale.
Behaviour Screening Measure of Marital
Satisfaction. Family
Disabled Children Relationship Index.
Questionnaire. Social Support Resources
Questionnaire. Life
events. Way of Coping
Questionnaire
– Measures of Processes
of Care (MPOC)
Stress question

King (1999)31 109 children with CP, spina
bifida, or hydrocephalus. Various
regular therapies of six publicly
funded children’s rehabilitation
centres in Ontario, Canada
164 parents: 103 mothers Functional independence.
and 61 fathers Number of health problems
and of received services.
Survey Diagnostic Instrument
(behavioural and emotional
problems)
MPOC. Family Assessment
Device. Social Support
Questionnaire (SSQ-6).
Impact on Family scale.
Coping Health Inventory
for parents. Client
Satisfaction with Care.
Symptom Checklist-90
and Depression scale

66 Developmental Medicine & Child Neurology 2003, 45: 58–69

about the value of parental participation for the well-being of
parents of children with severe physical impairments. The cur-
rent opinion that parents should be more and more actively
involved in the physical therapy of their children seems to be
based on the positive effect on the children only, and on some
very limited studies looking at the effects on the parents, some-
times only involving compliance to the therapy. More recent
studies reviewed in this paper suggest that parental participa-
tion may be beneficial for some parents, but not for all of them.
Three factors seem to be of main influence on the effects
of parental participation on the parents. First, the relation
between parents and therapists is important. As mentioned,
about 33% of the stressful situations that parents of children
with disabilities experience involve the medical facility and/or
medical professionals.28 To meet the service needs of parents,
especially exchange of information and equal involvement
appear to be important factors.30 Parents must not only be
involved in a practical sense, such as implementing therapy

Table I: continued All studies were coded for strength of

Results
Children Parents
– 33% of the stressful
encounters described in
the WOC are related to
medical facility and/or
professionals. For mothers
with disabled children,
information level predicts
less psychological distress.
More depressive symptoms
in mothers of disabled
children. Emotion-focused
coping positively correlated
and problem-focused
coping negatively correlated
to parental stress
– Teachers and
physiotherapists were
perceived as most helpful.
Greatest area of unmet
needs is information.
Passive coping and life
events are related to
unmet needs
evidence by using the AACPDM Evidence
AACPDM Levels developed by the AACPDM Treatment
Level of Evidence Outcomes Committee (Committee chairs: C.
Butler and H.Chambers). Guidelines can be
viewed at the AACPDM website at
III http://www.aacpdm.org.
Evidence Levels were coded as follows:
• Level I: Randomized controlled trial or All
or none case series
• Level II: Non-randomized controlled trial or
cohort study with concurrent control group
• Level III: Case-control study or cohort study
with historical control group
• Level IV: Case series without control group
• Level V: Case reports, anecdotes, expert
opinion without explicit critical appraisal
(or testimony), theory based on physiology,
bench, animal research, or common
sense/first principles.
IV

– ‘Enabling and partnership’ IV

is most valued aspect of
care by both mothers and
fathers. 80% of mothers
attended more than half
of the child’s treatment
sessions, and 33% of fathers.
No differences between
mothers and fathers on
stress ratings and
perceptions of caregiving
– Family-centred caregiving IV
appears most beneficial
for parents’ emotional
well-being, satisfaction with
services and stress. Child
behaviour problems predicted
depression and distress of
parents. Family function and
social support predicted
parents’ well-being

Annotation 67
activities at home, but therapists have to make an effort for
parents to feel involved; then, compliance to performing
therapy activities at home will increase.24 Moreover, if par-
ents are also involved in setting goals, evaluating goals of the
therapy, and are able to decide together with the therapist on
the content of the home programme and the amount of time
the home programme would take, as was the case in the
functional approach in the study of Ketelaar and col-
leagues,19 parents not only are better able to carry out the
home programme, but also feel more competent as parents.
Second, it is important for therapists to focus on family
functioning and functioning of the child within the family
when developing home programmes. This becomes clear
from the study of Hinojosa26 in which mothers were only
performing home programmes if they were easy to integrate
into daily family functioning. Moreover, King31 showed that
family-centred care predicts parents’ emotional well-being,
low parental stress, and high satisfaction with services.
However, these general findings must be seen in the light
of more recent studies on the effects of parental participa-
tion, in which the interactions between parent, therapy, and
child characteristics are studied.15,27,31 These studies show
that more involvement of parents in their children’s therapy
may not be positive for all groups of parents. Especially for
parents who have already high coping resources, extra per-
sonal involvement with the therapy for their children might
even be counter-effective. Thus, if therapists make an effort
to include parental participation, they must be aware of the
needs of specific families.
Third, the contact between parents during therapy seems
to be important for parental well-being. This factor appeared
to be the most important factor in reducing parental stress in
a study by Catanese and coworkers.16 Therefore, informal
contact between parents or organized parent groups may be
very useful for the well-being of parents of children with
physical disabilities.
Thus, if parental participation is to become a regular part
of the physical therapy for children with chronic physical dis-
abilities, attention should be paid to the effects on parental
well-being and the factors that influence it. In that way, thera-
py could be optimized to benefit both children and parents.
The present review gives a first indication of where to focus
on, but larger, more controlled studies are highly needed.
Implications for research
When discussing the various studies performed in the last 20
years, it becomes clear that the focus of research on parental
participation has changed from a purely child-centred to a
more integrated family-centred view. In the earlier studies,
parental measures were only analyzed in relation to the
effects of physical therapy on children. In more recent stud-
ies, parental measures have also been analyzed separately.
However, there are only a few recent studies in which the
complex interactions between parents, therapy, and child
factors are studied. Eventually, the interaction between these
factors will be the most valuable, as the final goal of these
studies should be to evaluate therapies according to their
effects on both parents and children.
One of the main problems in drawing overall conclusions
from all the studies discussed in this review, is the lack of con-
sistency in the methods used to study the effects of parental
participation.
68 Developmental Medicine & Child Neurology 2003, 45: 58–69
First, of the eight AACPDM level-I studies, there are only
three in which a direct comparison is made between more or
less parental participation. In the five other studies, two ther-
apies are compared that differ in many more aspects besides
the amount of parental participation.
There is one level-II study that was not randomized and in
which the two therapies compared differed in many respects
other than in the amount of parental participation,16 one level-
III study in which even the diagnosis of the children differed
between group,23 and there are a lot of level-IV studies with no
control group at all, in which the effect of one specific therapy
(see Table Ib) or regular therapies (see Table Ic) are studied.
This lack of controlled studies on the effects of parental partici-
pation on parents, makes it difficult to make useful conclusions
about the effects of participation on parents.
Second, although there are some studies using a random-
ized design comparing physical therapies, with more or less
parental participation as coded by AACPDM evidence level-I
studies, none of these studies have measured the effects of
parental participation on parents as the main focus. Therefore,
it could be argued that these studies should not be given
level I evidence after all, as they may not provide convincing
evidence on the effects on parents. The more recent studies
that do focus specifically on the effect of physical therapies
on parents seem to provide much more specific information,
but those are mainly AACPDM evidence level-IV studies and
can only provide possible factors that may be important to
include in future randomized studies on the effects of
parental participation in parents. Therefore, the conclusions
that can be made from the results of the studies and their levels
of evidence that are discussed in this review should be regard-
ed with great caution. Only randomized controlled studies
with the main focus on the effects of varying levels of parental
participation on parents could establish convincing evidence
on the effects of parental participation on parents.
Third, the actual content of the parental participation is
usually not clearly described, which makes it very difficult to
compare the findings from the studies. Therefore, future stud-
ies on the effects of parental participation that include more
controlled clinical trials, in which therapies only differ in
parental participation and not in other aspects of the therapy,
are highly needed: it should be clear from the method in
which way the parental participation differs between experi-
mental and control group. Moreover, these descriptions
should not only focus on the practical aspects of therapy, but
also on the interaction between parents and therapists. It is
clear from this review that especially factors like exchange of
information and equal involvement are important aspects of
therapy that predict parental well-being and the satisfaction
with care of parents. However, in the present literature these
aspects of parental participation are usually not well
described, but fortunately they are getting more and more
attention. Recently, King and coworkers32 have developed a
useful tool to measure parent–therapist interactional aspects
of parental participation in physical therapy in a standardized
way: the Measures of Processes of Care (MPOC). With this ques-
tionnaire, the important interpersonal factors of parental par-
ticipation can be included in future studies on the effects of
parental participation on parents.
Fourth, there is a large variation in outcome variables that
are used. Outcome variables vary from compliance, to stress,
to psychopathology. While the relation between compliance
and parental well-being might be too therapy focused, a mea-
sure like psychiatric symptoms of the parents might be too
gross to be influenced by the physical therapy for their chil-
dren. Therefore, future studies should focus on more specif-
ic measures of parental well-being that result in data with
enough variance, so they can more easily be related to the
various aspects of the therapy and to the effects of the thera-
py for their children. In this way, it will become possible to
study in more detail the complex interactions between par-
ent, therapy, and child characteristics. Hopefully, this will
contribute to the development of physical therapy pro-
grammes that are beneficial both to children with chronic
disabilities and their parents.
DOI:.10.1017/S0012162203000112
Accepted for publication 16th August 2002.
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Annotation 69