35   SA JournAl of PhySiotherAPy 2011 Vol 67 no 3 

Research

Article

Using caregivers’ perceptions of 
rehabilitation services for children with 

Cerebral Palsy at public sector hospitals 
to identify the components of 

an appropriate service

Corresponding author:
Gillian Saloojee
12a Rhodes Avenue,
Parktown,
Johannesburg
2193
South Africa
Email: gsaloojee@icon.co.za

AbSTrAcT:  Despite a growing body of evidence favouring a family-
centred approach to rehabilitation services for children with cerebral palsy 
(cp), the essential components for a quality service for children with 
disabilities and their families living in poorly-resourced South African (SA) 
settings remains unknown. The study aimed to identify key components 
of an appropriate rehabilitation service which would meet the needs of 
children with CP and their caregivers at SA public sector hospitals. This 
cross-sectional descriptive study used the modified Measure of processes 
of care (Mpoc-20) questionnaire together with two open-ended questions 
with a convenience sample of caregivers attending therapy at CP Clinics 
in gauteng and limpopo hospitals. A total of 263 caregivers attending 
cerebral palsy clinics at 31 public sector hospitals in gauteng and limpopo 
were interviewed. Kind and caring attitudes, exercises or “training” for the 
child, and practical assistance (handling ideas and suggestions, assistive 
devices, food supplements, nappies, advice) were components of care most valued. The most frustration was caused 
by long queues waiting for files or at the pharmacy and being treated disrespectfully whilst providing caregivers with 
information and explanations regarding treatment choice were services that could be improved.  Key components 
for an appropriate therapy service include caring and respectful attitudes, hands-on therapy, handling suggestions 
and practical assistance. Logistical and administrative procedures together with disrespectul and unhelpful attitudes 
negatively impact rehabilitation service delivery.  

Key wordS: cereBrAl pAlSy, cAregIverS, TherApy ServIce, MeASure of proceSSeS of  
cAre (Mpoc)

Saloojee GM, PhD1
Rosenbaum PL, PhD2

Stewart AV, PhD1

 1 School of Therapeutic Sciences, 
  Physiotherapy Department 
  University of the Witwatersand, 
  Johannesburg, South Africa.

 2 CanChild, Centre for Childhood Disability  
  Research, McMaster University, 
  Hamilton, Ontario, Canada.

givers of children with CP is important 
in identifying the essential components 
of a rehabilitation service that is not only 
relevant and appropriate to local condi­
tions but also meets the needs of parents 
in a particular community. Details about 
specific behaviours of providers can be 
used to target areas where improvement 
is warranted and can inform service 
providers on how best to meet parents’ 
needs (King et al 2004). 

Although this process has been fol­
lowed in a number of countries and 
settings (Dyke et al 2006; Hartley et 
al 2005; King et al 2004; Goldbart and 
Mukherjee 2001; Brodin and Molosiwa 
2000; Milner 1996), the views, expe­
riences and perceptions of caregivers of 
children with CP attending therapy at 

INtRODuCtION
Cerebral palsy (CP) is the single biggest 
cause of childhood disability worldwide 
(Stanley et al 2000, Hagberg et al 1996). 
It is a lifelong condition, and the goal of a 
rehabilitation service is to help the child 
and family function in the most effective 
way possible (Milner et al 1996). The 
value of family­centred principles in 
guiding the delivery of paediatric reha­
bilitation services has been advocated 
in the literature for a number of years, 
but only recently have paediatric service 
providers been able to base their prac­
tices on the evidence for family­centred 
services (FCS) and not merely on recom­
mendations (Dyke et al 2006). As King  
et al ( 2004; 1996) point out, listening to 
the views and experiences of the care­

public sector hospitals in South African 
have not been described.  This makes 
it difficult for South African service 
providers in public hospitals to know 
whether the intervention services they 
are offering to children with CP and  
their caregivers are relevant and appro­
priate and whether they meet the needs 
of the caregivers and their families.



36   SA JournAl of PhySiotherAPy 2011 Vol 67 no 3 

This study had a two­fold aim ­ firstly 
to identify the characteristics of the 
present services  for children with CP 
most (and least) valued by caregivers 
living in poorly­resourced areas and 
secondly, to assess from the caregivers’ 
perspective, what aspects of FCS service 
providers were currently doing well. 
Information from this study will assist 
in identifying the key components of 
an appropriate service for children with 
cerebral palsy attending public sector 
hospitals which will meet the needs of 
the children and their caregivers.

MEtHOD
This cross­sectional descriptive study 
used a convenience sample of care­
givers of children aged between one 
and eighteen years with a diagnosis of 
cerebral palsy. The participants had 
to be living in poorly resourced peri­
urban, urban or rural area and had to 
have received at least three months of 
rehabilitation therapy services (physio­
therapy, occupational therapy and/or 
speech therapy) at a public sector hos­
pital in Gauteng or Limpopo Province. 
Only district, secondary and tertiary 
hospitals with established services for 
children with cerebral palsy (i.e. a regu­
lar weekly or monthly cerebral palsy 
clinic) were eligible for inclusion in the 
study.  This study formed part of a larger 
study (Saloojee et al 2009) and the sam­
ple size was based on Nunnally’s (1978) 
suggested criterion of a minimum of 10 
participants for each scale item. As one 
of the measuring instruments used in the 
current study had 22 items, a minimum 
sample size of 220 subjects was therefore 
considered appropriate. Caregivers were 
excluded from the study if their children 
had undergone surgery related to the CP 
condition in the previous six months. 

Following approval by the Human 
Research Ethics Committee of the 
University of the Witwatersrand (Clear­
ance Certificate R14/49) and the respec­
tive Departments of Health of Gauteng 
and Limpopo Provinces, data collection 
took place over a four month period 
(August to November) in 2004. All eli­
gible caregivers were invited to parti­
cipate in the study when they arrived at 
the hospital for their monthly therapy 
appointments. Two hundred and sixty 

three caregivers consented to take part in 
the study. 

The Gross Motor Function Classi­
fication System (GMFCS) (Palisano et 
al 1997) was used to classify the child 
according to their functional motor 
abilities. This is a standardised method 
to describe the gross motor functional 
ability of children with CP in one of 
five ordered levels. Children at Level I 
can perform most or all the activities of 
their normally developing age­matched 
peers (although the speed and quality 
of movement may be limited), whereas 
children at Level V have difficulty con­
trolling their head and trunk posture in 
most positions or achieving any volun­
tary control of movement. The child’s 
age was also taken into account when 
determining the rating.

Apart from a general demographic 
questionnaire, two tools were used ­  the 
Measure of Processes of Care (MPOC) 
and a short questionnaire consisting of 
two open­ended questions.  The Measure 
of Processes of Care (MPOC) was  
developed in Canada and it assesses care­
givers’ reported experiences of family­
centred behaviours of rehabilitation 
service providers (King et al 2004).  
The measure is specifically intended  
for families of children with neuro­
developmental disorders and is designed 
to examine caregivers’ care experience 
in its entirety rather than individual 
professional efforts. The MPOC is a 
self­report scale covering five target 
areas namely: enabling and partnership; 
providing general information; provid­
ing specific information; co­ordinated 
and comprehensive care; and respect­
ful and supportive care. For each item,  
the caregiver responds to a common 
question “To what extent do the people 
who work with your child …” followed 
by an item that begins with a verb 
describing service provider behaviour. 
Items are scored on a 1 (never) to 7 (to a 
great extent) basis. 

For this study a modified version of 
the MPOC­20, the MPOC­SA (22) was 
used (Saloojee 2009).  However, the 
total scores for each of the five sub­
scales of this outcome measure could 
not be used to provide an overall rating 
of the parents’ perceptions of family­
centred care they received because the 

MPOC­22(SA) as a whole has been 
shown to neither a reliable nor valid 
tool for this population. But as one of 
the aims of the study was to assess care­
givers’ perceptions of  which particular 
aspects of FCS service providers were 
currently doing well, the responses to 
each individual item of the measure  
still provided useful information on the 
perceptions of individual elements of the 
quality of  care they received. Therefore, 
for the purposes of this study, the MPOC 
seven point Likert scale was collapsed to 
a three point scale. Scores between one 
and three were considered “unfavour­
able responses”; a score of four was con­
sidered a neutral response whilst scores 
between five and seven were considered 
“favourable responses.”  The scores were 
not summed. This made it possible to 
identify the aspects of family­centred 
services caregivers perceived service 
providers to be doing well. 

In addition to the interview­admini­
stered MPOC­SA(22), two–opened 
questions were included. Caregivers 
were asked to name (1) the three aspects 
they liked best and (2) the three aspects 
they liked the least about the service.  
The interviewers translated and recorded 
their responses in English.  Two unem­
ployed mothers of children with dis­  
abi lities from Soweto were recruited via 
a community­based day care centre for 
children with multiple disabilities and 
trained as interviewers by the principal 
investigator. In addition to being flu­
ent in English, they were able to read,  
speak and understand all six languages 
(Isizulu, Setswana, Sesotho, Sepedi, 
Xitsonga and Tshivenda) required for 
the study and were comfortable talk­
ing about their own children as well as  
talking to other mothers. 

An Access database was used for data 
entry. The data were analysed using 
SPSS® (Version 13.0) for Windows 
statistical package (SPSS Inc, Chicago, 
USA). Descriptive statistics and fre­
quency tables were the first step for 
data analysis. Responses to the two 
open­ended questions regarding the 
aspects of the service best and least 
liked were analysed using open coding 
and then grouped into similar catego­
ries as described by Neumann (2000). 



37   SA JournAl of PhySiotherAPy 2011 Vol 67 no 3 

RESultS

Demographic characteristics of care-
givers and children
A total of 263 caregivers were inter­
viewed: 127 (48.3%) were from 13 hospi  
tals in Gauteng and 136 (51.7%) were 
from 18 hospitals in Limpopo. Almost 
all caregivers (96%) interviewed were 
either the child’s mother (87%) or grand­
mother (9%). The majority of caregivers 
(179 [70%]) were under the age of 35 
years. Just over half (58%) had com­
pleted primary school education and  
the majority (78%) were unemployed.  
The majority of families (72%) lived in 
formal housing whilst just over a quarter 
lived in informal shacks or mud huts. 
A government social assistance grant 
(equivalent to R780 at the time of the 
study) was the only source of income for 
a fifth of the families and the majority 
of families [226 (86%)] had a monthly 
income of R1000 or less. 

The mean age of the children was 
3.3 years (SD = 2.6). The majority of 
children (173 [66%]) were classified 
as GMFCS Level IV and V, indicat­
ing severe functional disability whilst 
48 (18%) were moderately involved 
(GMFCS Level III) and the remain­
ing 43 children (16%) were GMFCS  
Level I and II, indicating milder func­
tional disability. Almost two­thirds of the 
children (n=166 [63%]) had attended 
therapy for 12 months or longer.

Most and least valued characteristics  
of current service delivery   
Regarding the two open­ended ques­
tions about  aspects of the service most 
and least valued by caregivers, 224  
caregivers provided a total of 542 
responses to the first question, and 
168 caregivers provided a total of 
303 responses to the second question  
(Tables 1 and 2).

The therapists’ caring attitudes towards 
the child and the caregiver together  
with the exercises or “training” the child 
received were the most common positive 
attributes of the service and accounted 
for 60% of the responses recorded  
(Table 1). A quarter of the responses 
included the following three character­
istics ­  the role of the doctor at the CP 
Clinic in examining the children and 
treating caregivers with respect; the spe­
cific handling skills therapists showed 
the caregivers which enabled them to 
interact with and to handle their children 
more effectively;  and the respect and 
affirmation therapists gave caregivers.  
A further 5% of responses specifically 
mentioned the practical assistance (in 
the form of assistance with transport 
costs, food supplements, nappies, toys 
and accessing care dependency grants) 
as another positive aspect of the current 
service. 

Over 40% of the responses were 
complaints about the long queues at 
the dispensary waiting for medicine as 

well as inefficient administrative pro­
cedures and having to wait for files at 
the out patients department (Table 2).  
Disrespectful and “uncaring” attitudes 
of the staff (i.e. nurses, doctors and 
therapists) accounted for a further 30% 
of the responses regarding character­
istics least valued by caregivers whilst 
6% of responses specifically mentioned 
disrespectful treatment and unhelpful 
attitudes from cleaners and clerks in  
the therapy departments. Caregivers also 
expressed dissatisfaction with the long 
waiting lists for therapy appointments 
(6% of respondents) and cited a lack of 
equipment and assistive devices such  
as wheelchairs and buggies as aspects of 
current services least valued.

Perceptions of family-Centred Services 
(fCS)
Caregivers’ perceptions of family­cen­
tred behaviours they thought therapists 
were doing well were that therapists 
talked to the caregivers and explained 
what they doing during therapy; they 
made caregivers feel that as parents,  
they were doing a good job; they pro­
vided a caring atmosphere; caregivers 
felt that they gained something from 
every session and were given sugges­
tions and ideas or things to do at home 
between visits to the hospital (Table 3).

Family­centred behaviours which  
care  givers perceived in an unfavourable 
light were insufficient opportunities for 

Table 1:  Number of responses relating to what caregivers liked best about the service (n=542)

Response n %

Therapists’ caring attitude to child and caregiver and  good communication with caregivers 168 31.0

Good therapy service (i.e. the exercises or “training” the children receive) 159 29.3

Doctors role ( examining the children; good communication with mothers and caring attitude) 61 11.2

Caregiver taught specific skills handling and interacting with the child 47 8.7

Caregiver affirmed and made to feel good about herself; felt respected 35 6.4

Assistance with grants, schools, transport costs, food and food supplements, nappies, toys, equipment 25 4.6

Therapists’ punctuality; short waiting time for treatment) 11 2.0

Hospital environment (neat, clerks good) 10 1.8

Children receive good medication 13 2.4

Centralised service for children (“all in one place’), services free 6 1.1

Friendly nurses: assistance with interpretation 7 1.3

TOTAL NUMBER OF”BEST LIKED ASPECTS” GIVEN BY CAREGIVERS 542 100.0



38   SA JournAl of PhySiotherAPy 2011 Vol 67 no 3 

the whole family to obtain information; 
insufficient advice on how to get infor­
mation or contact other parents; care­
givers did not feel that they were given 
opportunities to make decisions about 
treatment; and that treatment choices 
were not explained to them (Table 3).

DISCuSSION
Caregivers in this study generally 
expressed satisfaction with current 
services and felt that they gained some­
thing from coming for therapy. This is 
not surprising given that the sample 
population was caregivers who attended 
therapy regularly. This is a limitation of 
the study as it does not reflect the views 
of those caregivers who no longer come 
for therapy. Their views are relevant as 
the reasons why they stopped attending 
may be related to negative aspects of, or 
dissatisfaction with, the service. As the 
sample was drawn from 31 of the 36  
eligible hospitals in Gauteng and Lim­
popo, a wide and presumably geographi­
cally representative spread is reflected. 
As the responses to the questions have 
been combined, it is not possible to 
make comparisons between hospitals or 
between provinces. The aim of the study 
was to obtain the overall perceptions of 
caregivers attending therapy services at 

public sector hospitals, rather than to 
compare hospitals or provinces.

Both measuring tools described the 
same  two traits most valued by  care­
givers  ­  the  kind and caring attitudes 
of the therapists (“They show love to my 
child”) and the exercises or “training” 
the child received (“They give my child 
good treatment”). Caregivers also valued 
being taught specific handling skills; 
and being respected and affirmed as 
parents. Practical assistance in the form 
of the provision of assistive devices, 
food supplements and nappies together 
with advice regarding finding schools 
and accessing welfare grants was also 
appreciated. This echoes the findings of 
Hartley’s (2005) study in Uganda where 
parents expressed the need for assistive 
devices, physical resources such as food 
and money, and access to education for 
their children.

Weaknesses of the current services 
identified by the caregivers in the current 
study included the long queues at the 
dispensary and the out­patient depart­
ments; disrespectful and uncaring atti­
tudes of all staff (i.e. therapists, nurses, 
doctors, cleaners and clerks) as well as 
limited explanations given regarding 
treatment choices and providing infor­
mation about their child’s disability and 

available services. The dissatisfaction 
with the limited explanations regarding 
treatment choices may be explained by 
the fact that in public sector hospitals in 
poorly­resourced, treatment choices are 
limited in the first place.

Caregivers’ need for further infor­
mation has been highlighted in studies 
in various settings – from Botswana 
(Brodin and Molosiwa 2000) and 
Uganda (Hartley et al 2005) to the 
United Kingdom (Milner et al 1996), 
and Australia (Dyke et al 2006) and sug­
gest that this is a universal need and one 
which therapy services do not always 
adequately address. 

As Dyke et al (2006) point out, the pro­
vision of information empowers fami lies 
to make decisions about their children 
and alleviates the stress arising from  
ignorance. However, it needs to be recog­
nized that poorly­resourced settings are 
characterized by a lack of support ser­
vices, schools and treatment choices  
and this may also have contributed to 
the fact  items relating to the provision 
of information received unfavourable  
scores. 

Waiting times at the dispensary, the 
out­patient department for therapy as 
well as being treated disrespectfully 
were the main criticisms of current 

Table 2:   Number of responses to what caregivers liked least about the service (n=303)

Response n %

Dispensary: long queues to get medicine 61 20.1

Clerks and OPD: waiting times for files; rude clerks; inefficient service 62 20.5

Therapists: uncaring; in a hurry;  poor explanations; arrive late; don’t speak the language; lazy; 

poor treatment; no  follow-up appointment; poor communication with parents

40 13.2

Doctors attitudes: uncaring; impatient; see children infrequently; poor explanation of results 

and medications

28 9.2

Nurses’ attitudes: rude, harsh, uncaring 28 9.2

Waiting time for therapy 18 5.9

Lack of therapy equipment and wheelchairs 17 5.6

Being treated disrespectfully by cleaners, clerks in therapy department; general unhelpfulness 16 5.2

Distance and transport to the hospital 9 3.0

No home visits; therapy too infrequent 8 2.6

OPD – long queue to see doctor, even when child sick 8 2.6

Not enough doctors and therapists 5 1.6

Bureaucracy – being shunted from pillar to post 3 1.0

TOTAL NUMBER OF “LEAST LIKED ASPECTS” GIVEN BY CAREGIVERS 303 100.0



39   SA JournAl of PhySiotherAPy 2011 Vol 67 no 3 

rehabilitation services.  Aside from the 
disrespectful attitudes, these aspects are 
challenging to change as they require 
shifts in policies and procedures at a 
level beyond which therapists currently 
have much influence. 

The findings of this study and similar 
research conducted in Australia (Dyke 
et al 2006) highlights the differences 

between well­resourced and poorly­
resourced settings with regard to care­
giver perceptions of the components 
contributing to good service provision. 
Caregivers in Australia expressed the 
need for more general support for  the 
whole family through exploring their 
feelings for having a child with special 
needs; helping them to feel more com­

petent as parents; and tailoring treatment 
plans to the different lifestyles of fami­
lies, while caregivers in South Africa  
expressed a greater  need for being treated 
with respect and for practical support 
in the form of handling ideas, assistive 
devices, physical resources (food and 
transport) and access to schools rather 
than support for the whole family.   

Table 3:  Caregiver’s responses to the MPOC items (number of respondents, n = 260)

Mpoc ITeM: To what extent do the people who work 
with you and your child....

N/A UNFAVOURABLE

rating of 1,2 or 3

NeuTRAl

Rating of 4

FAVOURABLE

Rating or 5, 6 or 7

Explain what they are doing during therapy 0 5 6 249

Make you feel as a parent you are doing a good job 0 4 12 244

To what extent are you satisfied with the therapy service 
you receive here

0 13 12 235

To what extent do you feel you gain something from 
every session

0 15 11 234

Talk to you and tell what they are doing 0 13 14 233

Provide a caring atmosphere rather than just give 
you information

0 10 20 230

Give you suggestions and ideas of things to do at home 3 16 14 227

Explain what they want you to do between visits 1 22 12 225

Treat you as an equal rather than just a parent 
of a patient

1 20 20 219

Provide enough time to talk so you don’t feel rushed 2 15 25 218

Treat you as an individual rather than as a 
“typical parent”

0 23 26 211

Ensure you had a chance to explain the concerns and 
things that worry you most

6 30 20 204

Give you information about your child that is consistent 
from one person to the next

4 32 25 199

Follow-up on things you discussed or wanted to know 8 29 31 192

Look at the needs of your whole child 1 43 29 187

Provide information about the types of services offered 
at the hospital

3 62 23 172

Explain and tell you about results from assessments 27 55 16 162

Make sure that at least one member of the team is 
someone who works with you over a long period of time

3 54 44 159

Have information available in various forms 3 68 31 158

Have information available about your child’s disability 0 43 22 122

Provide advice on how to get information or 
how to contact other parents

7 114 18 121

Give you the opportunity to make decisions 
about treatment

9 121 14 116

Fully explain treatment choices to you 63 78 12 107

Provide opportunities for the whole family to obtain 
information

7 155 19 79



40   SA JournAl of PhySiotherAPy 2011 Vol 67 no 3 

In planning a more effective therapy 
service in a public service setting, the 
suggestions emanating from this study 
confirm what Groce (1999) has already 
noted – that in poor settings, rehabilita­
tion professionals need to do more than 
simply deliver technical services in a 
clinical setting. In these areas the need 
for rehabilitation rarely exists in isola­
tion from social needs. Thus the message 
to therapists concerns the necessity of 
having a broader outlook when planning 
and delivering a service for children  
with cerebral palsy. It is not sufficient to 
focus only on technical expertise within 
a family­centred framework. Enviro­
nmental factors, particularly the lack 
of resources such as schools, assistive 
devices and transport are equally impor­
tant and need to be addressed. Advocacy 
for improved access to assistive devices 
and schooling for children with special 
needs is also recommended. 

CONCluSION AND RECOMMENDAtIONS
The key components identified by this 
study for an appropriate therapy service  
for children with cerebral palsy at a 
South African public service hospital 
include: 

Kind,  caring, helpful and respectful • 
attitudes from all staff
 “Hands­on therapy” (or in the words • 
of the caregivers “training and exer­
cises”)
Talking to caregivers and providing • 
explanations on what is happening 
during therapy
Teaching caregivers specific hand­• 
ling skills and giving  suggestions 
on the  day to day management and 
caring for the children (e.g., how 
to feed the child; ideas for playing 
with the child; how to “loosen stiff 
muscles”; how to help the child to 
sit, etc)
Practical help with obtaining assis­• 
tive devices, nappies, schools, child 
dependency grants, etc.
Information regarding their child’s • 
disability together with information 
about  available services and support 
structures 

In public sector hospitals, therapy ser­
vices do not exist in isolation. Logistical 
issues and administrative procedures  

can impact negatively on rehabilitation 
services when caregivers spend many 
hours in queues waiting for files or for 
medication and these aspects are often 
beyond the scope and control of thera­
pists. 

Acknowledgements
Prof. M. Westaway assisted with the 
data analysis and we thank her for the 
expertise. We wish to thank the care­
givers and rehabilitation professionals 
who parti cipated in this study for  
sharing their time and experiences. We 
gratefully acknowledge Sonto Nhlabathi 
and  Grace Phiri, the two field workers  
who conducted all the interviews. 
Financial support was provided by 
the South African Medical Research 
Council, the South African Society of 
Physiotherapy, the University of the 
Witwatersrand and the British Asso­
ciation of Bobath Trained Therapists.

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