Indian Pediatr Suppl 2009;46: S79-S82
Utilization of Rehabilitation Services by
Rural Households with Disabled Preschool Children
J Padmamohan, MKC Nair, S Rema Devi, SM Nair, ML Leena
and G Suresh Kumar
From Clinical Epidemiology Research and Training Centre,
Medical College, Thiruvananthapuram, Kerala, India.
Correspondence to: Dr MKC Nair, Professor of Pediatrics
and Clinical Epidemiology and,
Director, Child Development Centre, Medical College,
Thiruvananthapuram 695011, Kerala, India.
We conducted this study to find the extent of
utilization of services and, identification of factors which determine
the use of such services in rural families with disabled preschool
children. Participants included disabled children in a Unicef supported
cross sectional survey conducted in a rural ICDS block. The overall
proportion of non-utilization of services was found to be 52.1% with the
maximum non-utilization among the households with speech and hearing
disability. The important explanatary variables predicting
non-utilization were low socioeconomic status (OR 4.6; 95% CI
1.27-17.68), poor educational level of father (OR 5.95; 95% CI
1.50-23.59) and poor acceptability of services (OR 36.2; 95% CI
8.73-150.2). This study has implications for planning and organization
of easily accessible, quality rehabilitation services in the community.
Keywords: Disability, Preschool children, Rehabilitation, Rural
Impairments in young children have to be
viewed as the initial phase of the disability process, which if not
addressed, will lead to added secondary disabilities and handicaps as the
child grows. A nation wide survey conducted by the National Sample Survey
Organisation has estimated that the population with disability in India is
approximately 1.9% of the total population and 5.3% and 3% of 0-14 year
age group are suffering from physical and mental disabilities,
respectively(1). It is generally accepted that early interventions can
alter the natural history of an impairment especially in childhood,
preventing secondary disabilities and handicaps(2).
Rehabilitation services in the context of childhood
disability encompass a wide range of interventions ranging from medical
service to educational service depending on the type and extent of the
disability. Institutions providing these services are situated in the
urban areas, while a significant proportion of disabled children are in
rural areas(3,4). There is a real need for reliable information on the
extent of utilization of rehabilitation services. The Child Development
Centre (CDC), Thiruvananthapuram with the support of Unicef had conducted
a survey in a rural block in Kerala to estimate the prevalence of
childhood disability in pre-school children and found that 2.5% of 0-5
year olds had delay, deformity or disability in one form or other. The
present study is a follow-up of these children to determine the extent of
utilization of rehabilitation services by the disabled preschool children
and to identify factors which determine the use of such services.
The baseline cross sectional survey conducted by CDC in
the Pattanakkad ICDS block in Kerala, surveyed 12520 children in the 0-5
years age group and those with delay, deformities and disabilities were
identified. From these, 105 children with disabilities were identified as
per Persons with Disability (PWD) Act definitions for the purpose of this
study(5). After obtaining the clearance from the institutional ethical
committee, these children were followed up and examined by a specialist in
rehabilitation medicine and a pediatrician, to know about the
rehabilitative services availed by them. The households of the disabled
children were identified with the help of Anganwadi workers. An interview
schedule was prepared for the purpose of the study and this was finalized
after pre-testing. The parents were explained about the study and consent
obtained before completion of the interview schedule. In order to get the
overall picture of the severity of the problem, it was important to
understand the patterns of disabilities that prevailed among children.
Therefore the data collected was supplemented by perusal of all previous
medical records relating to the child, available with the parents.
Of 105 children with disability identified from the
earlier survey, 98 children were included in this study. One child had
expired, 2 children had moved away out of the study site and four children
could not be traced due to change of address. Among the total of 98
participants, 63.3% children had locomotor disability including 25.5%
children with multiple disabilities. 19.3% children had speech and hearing
disability, 15.3% had mental retardation and 2.3% had visual disability.
The median age of diagnosis of speech and hearing disabilities was 30
months, while locomotor and mental disabilities were identified at the
median age of 8½ and 6 months, respectively.
Children on follow-up treatment and those not in need
of treatment were considered as utilizers for the study (n=47;
48%). Rest of the children (n=51; 52%), who discontinued treatment
or those who has not gone for treatment at all were considered as
non-utilizers. The proportion of non-utilization varied with the type of
disability, with the highest proportion of non-utilization in speech and
hearing disability (84.2%; 95% CI: 62.8-95.8), followed by locomotor
disability (53.2%; 95% CI: 40.8-65.4) and lowest in mental retardation
(13.3%; 95% CI: 2.3-37.5). The proportion of non-utilization was high in
district and medical college level compared to 20% at the taluk level. The
proportion of utilization in private hospitals was 50% and increased
further when the services were sought by private consultation. It was
observed that 28.6% children were on follow up. One-fifth of the children
discontinued treatment due to different reasons. 27.5% of parents have not
gone for any type of treatment.
In order to get further insights into the reasons for
this non-utilization we conducted a univariate analysis to explore the
various risk factors and confirmed it with a multivariate analysis. The
most important determinants of utilization of services by univariate
analysis are depicted in Table I. On multivariate logistic
regression analysis, low socioeconomic status, poor perceptions about the
disease and disability, low educational level of parents, and poor
acceptability of services were identified to determine lower utilization
Univariate Analysis of Determinants of Non-utilisation of Rehabilitation Services
(n=51) No. (%)
(n=47) No. (%)
|Maternal education <High school
|Father’s education <High school
|Low socioeconomic status
|Expenditure >Rs 50 per visit
|No perceived economic access
|Expenditure (% of per capita income >12.9%)
|Proximity of center (geographical access) >10 km
|No perceived geographical access
|Acceptability measure No (³2)
|No family support
|No community support
|Age group (in months) >59
|Knowledge score £8
The prevalence of non-utilization was found to be 52%
among households with preschool disabled children. The highest proportion
of non-utilizers was found in children with speech and hearing disability.
This indicates that hearing disability was detected much later than
others, leading to an accumulated morbidity of this disability. This
pattern in the case of hearing disability has also been reported in other
studies(6). Most of the children with disabilities have permanent
disabilities and the basic aim of rehabilitation is to improve functional
ability. Lack of intervention and improper utilization of services can
lead to many secondary disabilities apart from the primary disability. It
is to be noted that 31.1% of children were diagnosed at the Primary Health
Centre (PHC) and referred to higher centers and the proportion of
non-utilization was high at district level and Medical College level
compared to 20% at the taluk level. Even though the strategies for
intervention suggested by World Health Organization is PHC based, it was
observed that no child was being followed up at the PHC. Hence, there is a
need to create more awareness for early detection at PHC level and also
for more decentralization of rehabilitation services. Private consultation
was often the preferred choice of parents of disabled children. The
increased compliance to utilization of private sector services at the user
level shows that it is necessary to also co-opt this component into a
rehabilitation service program.
Psychosocial factors have an important role in
explaining utilization of services or health seeking behaviour. In this
study, information about perceived benefit, satisfaction and adequacy of
services provided, presence or absence of contradictory belief about
treatment, and presence or absence of rapport with the providers were
taken into account to obtain a measure of acceptability of the
interventions provided. Based on this, it was found that parents who were
not really convinced about the benefits of treatment and not satisfied
with the services were found to become non-utilizers. This belief is
strengthened by the fact that when childhood disability presents itself,
the aim of intervention is not complete cure but habilitation. This truth
is often emotionally not acceptable to parents and thus they tend to be
lured towards unscientific treatment methods existing in the community.
This is an important point in favor of creating awareness on disability
and rehabilitation among not only the community, but also among medical
professionals, so that proper guidance can be given to parents even at the
primary care level. The coping strategies for parents with disabled
children have been extensively studied and all of them indicate the
importance of parental involvement or partnership in the rehabilitation
The study findings clearly indicated the need for
establishing easily accessible community based services incorporating
existing social welfare and heath service infrastructure for children with
disability. Priority should be given to the prevention of childhood
disabilities by early diagnosis and interventions especially in the case
of speech and hearing disability. Creating community awareness regarding
childhood disability and need for proper utilization of rehabilitation
services is necessary for increasing the utilization of services
available. The need for clear concepts about disability and its management
among the medical profession by incorporating the same into the curriculum
and also by continuing education programs would help much in reducing the
burden of disability care at the user level and the caregiver level.
Planning at the local level should consider the difference in quality and
quantity of care required for different types of disability.
CERTC Thiruvananthapuram, Sunitha RM, Prasanna G,
Asokan N, Child Development Centre, ICDS functionaries.
Contributors: JP and MKCN were involved in
designing the study and preparation of the manuscript and JP will act as
guarantor. RDS and SMN were involved in the analysis. MLL and GSK helped
in manuscript writing.
Competing interests: None, stated. The findings and
conclusions of this report are those of the authors and do not necessarily
represent the views of the funding agency.
What This Study Adds?
• The prevalence of non-utilization of available
services was 52% among households with preschool disabled children
and the highest proportion of non-utilizers was in children with
speech and hearing disability (84.2%).
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