Asia Pacific Disability Rehabilitation Journal

146 Vol. 18 No. 2 2007

COMMUNITY PARTICIPATION IN COMMUNITY-BASED
REHABILITATION PROGRAMMES
Manoj Sharma*
ABSTRACT
Central to the community-based rehabilitation (CBR) approach is the
concept of community participation. While many projects are based on
the CBR approach, it is not evident how many CBR projects indeed use
and measure community participation. The purpose of this study was to
qualitatively analyse the extent of evaluation of community participation
in CBR studies evaluated over the last thirty years. A total of 22 evaluations
of CBR projects were carried out. Three studies each from Australia, India,
Zimbabwe and two studies each from England, Philippines, Vietnam and
one each from Finland, Guyana, Jamaica, Japan, Pakistan, Papua New
Guinea, Thailand, and the United States were included in the analysis.
From the 22 studies that evaluated CBR, only six evaluated community
participation. In the six evaluations that measured community participation,
it was found that four

documented positive effects of participation, while
two

showed that community participation did not work, or was inadequate
in the project. Community participation as a construct has not been
adequately measured by CBR programmes. There is need to measure all
dimensions of participation including measurement of the number of people
with disabilities reached and quantity and quality of resources generated
as a result of community participation. Valid and reliable measures of
community participation need to be developed.
INTRODUCTION
Three decades have elapsed since the World Health Organisation (WHO) introduced the
community-based rehabilitation (CBR) strategy as part of its goal to accomplish Health for
All by the year 2000(1). A training manual was produced in 1980 (2) which was revised in
1989 (3)

and has now been translated in several languages for use at the village level. In
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Asia Pacific Disability Rehabilitation Journal
essence, the primary tenet of CBR is to provide primary care and rehabilitative assistance to
persons with disabilities, by using human and other resources already available in their
communities. The five basic principles of CBR strategy include:
Utilisation of available resources in the community.
Transfer of knowledge about disabilities and skills in rehabilitation to people with disabilities,
families and communities.
Community involvement in planning, decision making, and evaluation.
Utilisation and strengthening of referral services at district, provincial, and national levels
that are able to perform skilled assessments with increasing sophistication, make
rehabilitation plans, participate in training and supervision.
Utilisation of a co-ordinated, multisectoral approach.
Central to the CBR approach is community participation. While many projects are based on
CBR approach, it is not evident how many indeed use and measure community participation.
Rifkin and Kangere note that there is no agreement among planners on the contribution of
community participation in improving the lives of people (4). Some of the arguments that
they have identified for inclusion of participation in CBR programmes are that people know
what works for them and professionals need to learn from them, people make contributions
of resources (money, materials, labour) for these programmes, people become committed to
activities that they have developed, and people can develop skills, knowledge and experience
that will aid them in their future work. It is against this backdrop that the purpose of this study
was to qualitatively analyse the extent of evaluation of community participation in CBR
studies evaluated over the last thirty years.
METHODOLOGY
In order to collect the materials for the study a search of MEDLINE database was done. A
search of the terms community based rehabilitation and evaluation in MEDLINE revealed
44 articles of which 22 met the inclusion criteria. The inclusion criteria were publications: (a)
in the English language; (b) that dealt with community-based rehabilitation as opposed to
institutional based rehabilitation; (c) publications that described any aspect of either a qualitative
or quantitative evaluation of a CBR programme and (d) published after 1980. Foreign language
publications or publications that did not describe a CBR evaluation were excluded. Also
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148 Vol. 18 No. 2 2007
excluded were publications not in MEDLINE database, professional reports, or other forms
of publication.
RESULTS
The studies have been arranged in the order of the year these have been published. The
studies are summarised in Table 1. The first study was done in Posio, Finland (5).

Using an
experimental design, it was found that self-perceived health of the elderly and of disabled
persons improved for the experimental group. No changes were found for functional capacity,
independence in household tasks, social participation, and leisure activities. The primary
costs of rehabilitation were lower for the experimental group, but the secondary costs were
the same. Community participation was not measured in the study.
Table 1. Summary of community participation in community-based rehabilitation
Year of Country Design Community Salient findings
Publi- Participation
cation related Outcome
Measure(s)
1985
5
1987
6
1988
7
1988
8,9
Finland
Zimbabwe
Guyana
Pakistan
Experimental
Post-test only
design
Multiple baseline
design and
qualitative
assessments
Pre-test Post-test
design
None
Participants
reactions to
the programme
Attitude of
mothers
Participants
reactions to
the programme
None
Community participation
not measured
99% found the
programme helpful
35% gave reasons why
the programme was helpful
90% of mothers indicated
that participation in the
programme did not
interfere with home
chores
Parental attitudes
changed significantly
after the programme
Community participation
not measured
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Year of Country Design Community Salient findings
Publi- Participation
cation related Outcome
Measure(s)
1992
10
1992
11
1992
12
1996
13
1998
14
1998
15
1998
16
1998
17
1998
18
2000
19
Philippines
and Zimbabwe
Jamaica
India
Zimbabwe
England
India
Vietnam
United States
Thailand
Philippines
Pre-test Post-test
design
Post-test only
design
Post-test only
design
Post-test only
design
Post-test only
design
Post-test only
design
Qualitative
Factorial mixed
model design
Pre-test post-test
design
Qualitative audit
methodology
None
None
None
Community
involvement
None
None
None
None
None
Access
Collaboration
Community participation
not measured
Community participation
not measured
Community participation
not measured
No support was found
that high community
involvement would result
in low impact of a child
with disability on the
caregiver
Community participation
not measured
Community participation
not measured
Community participation
not measured
Community participation
not measured
Community participation
not measured
Using personal interviews,
focus groups, and records
review it was found that
the CBR programme was
perceived as important
and accessible
Many members of the
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150 Vol. 18 No. 2 2007
Year of Country Design Community Salient findings
Publi- Participation
cation related Outcome
Measure(s)
community were
participatory and
contributing members
Strengths were identified
as: network partnerships,
community focus, social
cohesion, and trust
Opportunities were
identified as: participation
and community control
over decision making
Weaknesses regarding
community involvement
Community participation
not measured
Community participation
not measured
Community participation
not measured
Community participation
not measured
Community participation
not measured
Community participation
not measured
1. Network
partnerships
2. Community
focus
3. Social
cohesion
4. Participation
5. Community
control over
decision
making
6. Trust
Five tenets of
WHO model
including
community
participation.
None
None
None
None
None
None
2000
20
&
2003
21
2001
22
2002
23
2002
24
2003
25
2003
26
2003
27
2005
28
Australia
Vietnam
Japan
England
Australia
Papua New
Guinea
India
Australia
Qualitative SWOT
analysis
Qualitative SWOT
analysis
Case control
design
Randomised control
trial
Qualitative thematic
analysis
Survey and
qualitative
Prospective treatment
and comparison
group design
Prospective repeated
measures design
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The second study was done in four areas of Zimbabwe (6).

Using a post-test only design, it
was found that a large number of persons with disability (41%) were undiagnosed. Based on
the coordinators rating of the clients progress, it was noted that 16 % demonstrated outstanding
progress, 79% steady progress, and 5% showed little or no progress. Except for one, all the
136 participants found the programme helpful. The three contributory aspects found to be
important in the programme success were: partnerships with agencies, training in mental
handicap, and culturally relevant resource materials.
The third study was done in Guyana (7).

The study used a multiple baseline design where
three data points were taken over a two month period in the baseline and data was collected
using Portage checklist and Griffiths test of development. The study also collected qualitative
data on emotional disturbance of mothers, attitude of mothers, parental rating of the child
with most other children, and sentence completion to gauge initial responses. The study
contacted 815 homes with 4,644 persons and found 33 disabled children (1.85% of the sample
of children). On a repeated t-test the Griffiths test revealed statistical significance (p<0.01)
and so was significance found on the Portage test. Parents also rated significant improvement
in their children. Overall, the CBR approach was found to be successful.
The fourth study was done in a slum area (Kachi Abadi) and a village near Lahore in Pakistan
(8, 9).

The questionnaire from the WHO manual (2)

in a house-to-house survey was used to
gauge the prevalence of disability and identifying disabled persons in need of interventions.
Community participation was not measured in the study.
The fifth study was an evaluation done in Philippines and Zimbabwe in1992 (10).

The study used
a pretest post-test design and found that ability scores after CBR training increased by 78% in
Philippines and 93% in Zimbabwe. Community participation was not measured in the study.
The sixth study has been done in Jamaica (11).

The study utilised a post-test only design and
found that knowledge, attitudes and practices improved in approximately two thirds of the
persons with disability. Community participation was not measured in the study.
The seventh study is about Greater Madras Leprosy Treatment and Health Education Scheme
(GREMALTES) project done in India (12).

The study utilised a post-test only design and
found that acceptance about disease had increased among patients. Community participation
was not measured in the study.
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152 Vol. 18 No. 2 2007
The eighth study was done in Zimbabwe (13)

and interviewed CBR beneficiaries on six
variables: (a) traditional beliefs about children with disabilities, (b) impact of a child with
disability on the caregiver, (c) community involvement, (d) caregivers perceived ability to
teach the child, (e) attitude toward various health services, and (f) expectations for the
future of a disabled child. A significant correlation between appreciation of CBR and attitude
toward various health services was found. Also, it was found that perceived ability to teach
and expectations for the future of the child had significant correlation. There was no support
for the hypothesis that high community involvement in the care of a child with disability,
would result in low impact on the caregiver.
The ninth study was done in England (14)

and aimed at developing and validating a community
outcomes scale for persons with traumatic brain injury. Community participation was not
measured in the study.
The tenth study developed and validated a parental attitude scale for parents of disabled
children in rural India (15).

Community participation was not measured in the study.
The eleventh study is a qualitative account of training methods and their evaluation developed
in Vietnam for CBR (16). Community participation was not measured in the study.
The twelfth study was physically based in the United States but entailed a 4-day continuing
education training for 308 administrators, professionals and paraprofessionals from several
countries (17).

Community participation was not measured in the study.
The thirteenth study done in Thailand (18),

aimed at examining effectiveness and cost of the
CBR programme in a slum after a period of three years. Using a pre-test post-test design,
effectiveness of the programme was assessed by measuring walking velocity, pain levels,
and reasons for discontinuing the use of the CBR programme. Community participation was
not measured in the study.
The fourteenth study was done in the Philippines (19)

after seven years of operation and
used a qualitative approach of audit where records were reviewed, in-depth personal interviews
were conducted with key informants and focus groups discussions were held. It was found
that the CBR programme was perceived as important and accessible. The referral systems
were functioning well but there was scope for improvement. The clients and their families
were satisfied with the services and they were willing to help in the continuation of the
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programme. The WHO Training Manual was rated as useful. However, there was scope
for improvement in training methods, duration, follow-up, and translation into local language.
In terms of community participation, many members of the community were found to be
participatory and contributing members.
The fifteenth study was done in Australia and published in 2001 (20)

and 2003 (21).

It utilised
participatory rural appraisal in its planning and conducted qualitative SWOT (Strengths,
Weaknesses, Opportunities and Threats) Analysis around 15 identified characteristics. With
regard to community participation, it was found that network partnerships, community focus,
social cohesion, and a relationship of trust were strengths of the CBR programme.
Opportunities identified were participation and community control over decision making.
The sixteenth study was an evaluation done in 2001 in Vietnam (22).

A participatory SWOT
analysis method was utilised for evaluation. The data were examined against the WHO
model. Strengths of the programme were found in three out of five areas, namely, utilisation
of available resources, transfer of knowledge about disabilities, and utilisation and strengthening
of referral systems. The weaknesses were in the areas of community involvement in planning
and decision making and a co-ordinated multi-sectoral approach.
The seventeenth study was done in Japan (23)

that compared stroke survivors with controls
and found that functional fitness levels were less and varied in stroke survivors. Community
participation was not measured in the study.
The eighteenth study looked at traumatic brain injury survivors in England and used a
randomised controlled design (24).

Community participation was not measured in the study.
The nineteenth study done in Australia looked at qualitatively classifying client goals in CBR
programmes with acquired brain injury survivors (25).

A taxonomy related to five categories
of goals was developed: (a) me and my body, (b) looking after myself, (c) addressing
psychosocial issues, (d) relating to others, and (e) services and information. Community
participation was not measured in the study.
The twentieth study was done in Papua New Guinea (26)

and developed a ten question
screening questionnaire for childhood disability and also collected qualitative data from persons
with disabilities, to understand their perceptions. Community participation was not measured
in the study.
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154 Vol. 18 No. 2 2007
The twenty first study was done in India with persons suffering from chronic schizophrenia
(27).

Using a prospective treatment and comparison group design, the study found that the
CBR model was more effective in reducing disability and within this group the compliant
group had better outcomes than partially, or non-compliant individuals. Community participation
was not measured in the study.
The final study is from Australia (28),

in which a three stage programme was evaluated. In
the first stage, practical activities were used to build social skills. In the second stage a 9-day
outdoor adventure course was introduced with physically challenging tasks and in the third
stage individuals worked on individual goals that they had set. Community participation was
not measured in the study.
DISCUSSION
From the twenty-two studies that evaluated CBR, only six evaluated community participation.
This shows that researchers have not adequately considered community participation as a
significant construct. Community participation is an important component of CBR programmes
and needs to be measured in each evaluation.
In the six evaluations that measured community participation it was found that four (6, 7, 19,
20, 21)

documented positive effects of participation, while two (13, 22)

showed that community
participation did not work, or was inadequate in the project. A larger number of studies
showed that community participation is desirable in projects. However, the number of studies
done is very small to conclude for sure, that community participation always works. More
number of studies that measure community participation would need to be conducted, before
final judgment can be passed on the utility of community participation.
Of the six programmes that have measured community participation, the most common
method to measure has been by gauging the participants reaction to the programme. While
reactions to the programme are important, other dimensions of community participation also
need to be measured. Examples of such dimensions include involvement in planning, quantity
and quality of planning, role in decision making, involvement of persons with disability, of the
poor, and disadvantaged, and ownership of the programme by the community. Mitchell (29)
has emphasised a greater role of community involvement in planning, decision making and
evaluation of CBR programmes.
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Asia Pacific Disability Rehabilitation Journal
Partnerships in CBR programmes are also helpful in reaching a large number of persons
with disabilities (30).

Only one project (13)

has attempted to measure that aspect. CBR
projects need to measure such outreach impact. It is important to measure and document
how many persons with disability have been reached as a result of involving community
members.
In CBR programmes people from the community often make contributions of resources
(money, materials, labour) (4).

A documentation of these resources is also important, especially
if the projects have to become self sustaining. Unfortunately, none of the evaluations have
measured this aspect. Future evaluations should make attempts to measure the contribution
of resources from the community.
In this review, it was found that there is a deficiency of psychometrically valid and reliable
instruments that measure participation in CBR programmes. There is a need to develop
measurement tools that measure the multiple facets of participation in the context of CBR
projects.
In summary, it can be said that community participation as a construct has not been adequately
measured by CBR programmes. There is need to measure all dimensions of participation,
including measurement of the number of people with disabilities reached and quantity and
quality of resources generated as a result of community participation.
*Associate Professor, Health Promotion and Education
University of Cincinnati
526 Teachers College
P.O Box 210068
Cincinnati, OH 45221-0068
Phone: 513-556-3878 Fax: 513-556-3898
e-mail: [email protected]
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