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ORIGINAL ARTICLES

PHYSICALLY DISABLED CHILDREN IN NEPAL : A FOLLOW UP STUDY

William Boyce, Shankar Malakar*, Robert Millman and Krishna Bhattarai

ABSTRACT

A post-discharge study of children with physical disabilities was conducted in Nepal to determine their functional status in comparison with other Nepalese children. Two hundred and forty nine children who had been discharged from active treatment with the Hospital and Rehabilitation Centre for Disabled Children were randomly selected on the basis of their diagnosis and geographic location. Trained field workers assessed children with the Treatment Outcome Evaluation (TOE) in their homes and interviewed parents on their attitudes about disability. Results showed that the disabled children were functioning well in physical skills and in their educational settings, and that parental attitudes were generally positive. Girl children were not initially referred for treatment as often as boys, yet at discharge parental attitudes were not discriminatory towards girls.

INTRODUCTION

Nepal is a small country situated in southern Asia between India and China (Tibet). The population of Nepal is divided mainly between the plains or terai (47%) and the hill areas (46%) with only 7% of the population living in the mountainous regions (1). The main reasons for increase in migration from the hills to the terai are related to scarcity of fertile land and limited food production, under-employment, lack of accessible markets and transportation, and economic exploitation (2). Nepal is one of the poorest countries in the world and its underdeveloped economy contributes to low literacy rates and poor health statistics. It is estimated that 61% of the entire adult population of Nepal is illiterate, while the female illiteracy rate is 82% (3). Only 4.9% of Nepal's budget (fiscal year 1995/96) is allocated for health care. Little current information on disability is available, since no national surveys have been conducted since the International Year of Disabled Persons (1980), when the disability rate in Nepal was estimated at 3% (4,5). This may be a conservative estimate and, if compared to other countries in South Asia, the actual number of persons with disabilities could be more than 5% of the population if those with minor impairments and the fragile elderly are included. Data on rehabilitation programmes and services in Nepal are incomplete, however, most disabled persons in Nepal have little or no access to rehabilitation. Since little financial assistance is available for rehabilitation in Nepal, many persons with disabilities have come to rely on Community Based Rehabilitation (CBR) programmes to provide rehabilitation services and advocacy for public services. CBR attempts to utilise resources provided by the community and emphasises family involvement in rehabilitation.

Terre des Hommes (TdH), a Swiss based international children's organisation, has supported a programme for disabled children in Nepal since 1985. Of the total population of disabled persons in Nepal, 27.8% are reported to be children below the age of 15 years (5). TdH and a local non-government organisation called Friends of the Disabled (FoD) joined forces in 1992 to support the development of the Hospital and Rehabilitation Centre for Disabled Children (HRDC) in Kathmandu (6). HRDC provides medical and surgical treatment to physically disabled children under the age of fifteen years. The objective of the HRDC programme is to formulate and implement an individual rehabilitation plan for each disabled child served through its in-patient and out-patient CBR programmes (7). Although physiotherapy is provided as needed to disabled children at the Kathmandu hospital site, there is also a great deal of follow-up work accomplished by the HRDC field department through CBR activities and initiatives. Eventually, children are discharged from HRDC when they have achieved their functional rehabilitation goals, when they are referred to adult rehabilitation programmes, when they move and cannot be traced, or when families decide not to continue in the programme. Even when a child is discharged, a field worker may visit the family periodically to determine if new concerns have arisen (8). This type of discharge monitoring function is necessary to promote family independence, yet at the same time provides necessary contact as the child grows and develops, especially in the adolescent years.

HRDC which works in a difficult geographical and socio-economic environment, wanted to gain information about the physical and social status of disabled children who had completed their rehabilitation programme. By examining their functional status, rehabilitated children could be compared to the general Nepalese population and some conclusions could be drawn about the suitability and limitations of the HRDC approach to rehabilitation. This study was not intended to be an exhaustive evaluation of HRDC's programs, but was undertaken to provide insights into its CBR efforts and to provide a basis for future programme planning for disabled children in Nepal.

METHOD

Initially, a pilot study planned, developed, and tested a survey instrument for reliability in assessing the functional status of disabled children in Nepal (9). This instrument included information on demographics, diagnosis, health status, family attitudes, and child functional status (physical, self-care, mobility, social, education) (10,11). The Treatment Outcome Evaluation (TOE) instrument was designed as an ongoing monitoring and evaluation instrument which could be used to assess changes over time. However, in this study it was used to assess the functional status of children at a single point in time.

In 1992, the records at HRDC showed that 1145 children's cases had been closed. Selection of a study sample in this situation could be biased easily by geography and field worker preferences. To prevent these biases, data from the initial pilot study were used to determine a sampling frame, or characteristics of disabled children which should be included as selection factors. The initial study by Beach et. al. (9) demonstrated that three factors were most important in distinguishing the functional outcomes of 49 children. In order of importance, these factors were geographic location (rural or urban), diagnosis, and age. Age of the child affected scores only for self-care and schooling items, as would be expected in activities which are largely age-dependent, and was not included as a strata for sampling. Although there was a greater proportion of males (60%) among HRDC clients, gender was not an important variable in functional status and was not used as a strata for sampling either. However, due to its important effect on social and educational status, gender was monitored to ensure an approximate 60:40 distribution in the sample. Using a stratified random sampling procedure with geographic and diagnostic factors as strata, a sample of 239 children was drawn from the closed case file at HRDC. Children were located by field workers in 43 districts of Nepal. Although two families refused to participate and 23 others could not be located, these were replaced with other randomly selected cases. However, 9 extra cases were added to the sample when families were located subsequently and a total of 248 cases were reviewed overall. This sample represented 21.7% of the total number of closed cases at HRDC, and may be the largest sample for in-depth disability assessment yet undertaken in Nepal.

Eleven HRDC field workers were trained and participated in data collection over a 15 month period from October 1993 to December 1994. Families were informed that this post-discharge survey was intended to assess the status of disabled children in Nepal as a whole and not to assess their own child's progress. Families were given guarantees that the information was to be used only for programme planning purposes and to improve the services which HRDC could offer. TOE forms were checked for completeness and accuracy before entering data into a relational database (utilising Paradox 4.0). Descriptive statistics were generated for all variables. Guiding questions, or hypotheses, were then developed to allow a deeper probe of survey data by addressing relationships between key variables which HRDC staff believed to be important in their programme. These independent variables included geographic location, gender, family size, literacy, diagnosis, and marriage. The correlation between variables were tested at the p<.05 significance level using a variety of appropriate correlation measures (12).

RESULTS AND DISCUSSION

The results of this study are presented in two sections. Section A provides descriptive statistics of the variables in the major question areas. Section B presents an analysis of relationships between key variables of interest to programme staff. Discussion of the findings in comparison to other published information on Nepal are presented simultaneously. This allows for appreciation of the status of rehabilitated children in comparison to other children in Nepal and provides the basis for discussion of relevant issues.

Section A: Description Of Rehabilitated Children

1. DEMOGRAPHICS

Gender : Female children comprise 36.7% (91) of the sample population, while 63.3% (157) are male. The higher proportion of male clients who visit HRDC is consistent with observed national trends in India and Nepal, where girls have less access to health services than boys. One reason for these discrepancies is that boys and men often travel more for work, while girls are involved more frequently in household activities, which makes them a crucial component of family life and social organisation. However, this also makes it more difficult for a Nepalese family to send a girl child for medical treatment.

Geographical Region :Gender distribution appears to be associated with geography. The gender and geographic distribution of the children is 50.8% (126) rural boys versus 29.4% (73) rural girls, and 12.5% (31) urban boys versus 7.3% (18) urban girls. This finding indicates that the principle source of gender disproportion in HRDC's caseload is in the rural population, which may refer male children preferentially for treatment due to cultural biases and difficulties in travel. On a national scale, 50% of the total population of Nepal lives far from any road and often in mountainous areas. This situation poses severe problems with regard to access to services and their costs. The majority of children in this sample reside in the hill areas where people have reasonable access to information about public services, but may not have the financial resources to obtain the services they need. That 80% of HRDC cases come from less accessible rural areas attests to the rehabilitation needs in these locations.

Marital Status : Of the total sample, 11.3% (28) are married, including 3 married females under the age of 15 years. The minimum legal age for marriage in Nepal is 18 years for men and 21 years for women. However, national studies suggest that 22% of girls are married by the age of 13 years, 50% by the age of 16 years, and almost all by the age of 19 years (3). HRDC data indicate that the marriage potential of disabled children, and female children in particular, is affected by their functional status. These patterns are explored in Section B.

Education and Literacy : Most children in the study have some education, although 19% have had no education at all. The rate of reported adult literacy in the sample is very high with 40% of women caregivers reported to have reading or writing skills, while 89.2% of men are reported to be literate. These findings show a much higher rate of literacy than the national statistics (13). Between 1952 and 1986 male literacy rates in Nepal increased from 9.5% to 51.8% while female literacy rates increased from 0.7% to only 18.0%. Overall, by 1991, only 39.6% of the total population was literate. Different definitions of 'literacy' are likely to be the source of these discrepancies. Study respondents may have interpreted 'literacy' to mean being able to read and write their name, and perhaps the alphabet. However, this does not necessarily signify the 'functional literacy' that is necessary for modern societies.

Primary Source of Living for Family :The majority of families of disabled children are engaged in subsistence farming and the annual cash earnings are very low or negligible. In the sample, 77.8% of families perform subsistence farming, while 8.9% provide a service, 6.5% are landless, 3.6% are professionals or teachers, and 3.2% work in factories. These proportions are consistent with national trends in occupation which suggest that Nepal's dependence on agriculture provides employment for about 80% of the workforce (3). Many poor farming families work as tenant farmers or share-croppers, in which case often up to half of each crop goes in rent payment to landlords. Occasionally, farmers are required to borrow from landlords to meet the pressures of failed crops or when medical attention is required. Thus, the ability to pay for rehabilitation services is quite limited.

2. DISABILITY DIAGNOSIS

Table 1 shows the disability diagnosis of the sample of children

Table 1 : Diagnosis of the children
Diagnosis Total Rural male Rural female Urban male Urban female
Clubfoot 56 28 11 11 6
Trauma 38 17 13 6 2
Burns 34 18 11 2 3
Polio 28 9 13 4 2
Osteomyelitis 14 6 3 4 1
Cleft palate 14 8 6 0 0
Cerebral palsy 9 8 1 0 0
Tuberculosis 6 3 3 0 0
Other 49 29 12 4 4
Total 248 126 73 31 18

In the sample of 248 children, the major diagnoses are clubfoot 22.6% (56), trauma 15.3% (38), burns 13.7% (34) and poliomyelitis 11.3% (28). Less common diagnoses for these children are chronic osteomyelitis and cleft palate, each with 5.7% (14), cerebral palsy 3.5% (9) and tuberculosis 2.4% (6). Overall, the diagnoses in these discharged children reflect the primary HRDC mandate to provide orthopaedic surgery and rehabilitation services to physically disabled children in Nepal.

3. FAMILY KNOWLEDGE, ATTITUDES, AND BEHAVIOUR TOWARDS DISABILITY

Knowledge Of Common Causes Of Disability In Children : Respondents were asked to comment on the general causes of disability in children. Factors such as poor medical facilities (83.9%), carelessness (75.6%), congenital problems (71.9%), neglect (69.6%), infection (64.5%), poverty (57.1%) and lack of education (55.3%) are reported to be the most significant causes of disability. It is interesting to note that only 39.2% of the respondents cite bad Karma as one of the causes of disability, which is lower than has been reported elsewhere in Southeast Asia (14). In north India, with a similar Hindu population, family members of disabled persons tend to attribute Karma as the prime cause of disability (15). Thus, superstition and fatalism may not be major limiting factors in the development of preventative programmes in Nepal.

Where Families Currently Obtain Treatment : At the time of interview, 76.6% of families in the sample use hospitals while 8.7% use health posts. Only 0.5% report that they currently visit traditional healers. However, 7.3% report that they use no services at all. The high proportion of families of discharged children who report using modern health services is somewhat surprising. Despite the fact that there has been progress in medical and health provision, the most significant problem for Nepalese people in rural areas has been low levels of staffing, staff absenteeism, and lack of resources in health services. The families in the study appear to be making special efforts to continue seeking health services, perhaps due to the educational component of the HRDC programme.

4. CHILD FUNCTIONAL STATUS

Pain and Functional Ability : Pain due to a physical impairment is reported by 32.7% of children in the sample. Of these 81 children, 14.8% experience pain on a daily basis. For 14. 1 % of this group, pain limits functional activities such as mobility (8.5%), household chores (5.2%), self-care (2.4%), working in the fields (2.0%), and school work (2.0%). Although the number of children who continue to experience pain and discomfort after discharge is significant, their functional limitations are not reported as being serious.

Self Care : Of the total sample, 73.4% have complete independence in self-care and a further 18.1% require only supervision. Respondents report that most children are totally independent in tasks such as eating and drinking (91.9%), dressing (89.9%), toileting (85.1 %), and washing and cleaning activities (81.0% - 90.7%). The developmental age of children has an effect on these self-care scores as some children are too young to be expected to have complete independence. On the other hand, it should be noted that children in rural Asian countries tend to be independent in self-care from a very young age.

Mobility : Interviewers directly observed the mobility abilities of children. Two hundred and forty four children (98.4%) are able to walk; 1 person uses a wheelchair; and 3 persons either roll, scoot, or crawl. The four children who are not able to walk have diagnoses of cerebral palsy which limits co-ordination, strength, and flexibility of the legs. A very high percentage of children are mobile indoors, outdoors, on stairs, and in their immediate community. Although most children have good basic mobility skills, there are frequent problems with their rates of locomotion, their ability to negotiate hills and rough terrain, and their ability to carry objects while walking. No child in the sample has complete independence in these advanced mobility activities. Thus, while the great majority of children have good basic mobility, there are limitations in the finer, qualitative aspects of mobility which are necessary for full function.

Social Function : The general social function of children was assessed in areas of communication, play, household chores, and work. Most children have full levels of cognitive understanding (94.4%) and communication skills(91.1%). This normal cognitive function is expected in a population of children with primary physical and orthopaedic impairments. However, play activities involving outdoor games are reported to be limited in 29.5%, and absent in 23.4% of the sample. The older age of half of the children partly explains these limitations in play. The study data indicate no difference in leisure time available to male and female disabled children, which contradicts findings in other reports of Nepalese children (3). Respondents note that 67.7% of children participate fully in household chores, although only 45.6% contribute in some way to their families' incomes. In rural areas in Nepal, most children make some contribution to the household as it is considered appropriate for children to "earn their keep". Boys and girls tend animals and help with agricultural tasks. Girls often care for younger siblings and collect water, firewood, and fodder. A child with a moderate disability has significant obstacles to overcome in meeting work expectations. This is especially the case when the child must travel farther in search of fuel and fodder as resources diminish in a particular area. Furthermore, impairment in disabled children may increase from daily tasks such as carrying water, in which heavy weight creates problems of bone deformity. However, such activities also contribute to the social rehabilitation of disabled children. Overall in Nepal, the involvement of children in household and farm work activities gives them the opportunity to learn traditional skills of their household or community. A disabled child who cannot fully participate in household work may be deprived of an important part of their socialisation experience.

Schooling : Prior to going to the HRDC programme, 52.8% of the children are reported to have attended school. A 50% schooling rate is consistent with the 1990 national profile for Nepalese children After completing rehabilitation, 61.7% of the children are attending school and a significant percentage of families (69.9%) report that they learned the importance of schooling from HRDC. Although this study did not determine the grade levels achieved by disabled children, their enrolment in school appears to be better than national averages, indicating that attitudes towards schooling for disabled children are positive.

Effect of Treatment : Respondents were asked whether they felt that HRDC treatment had an effect on the child's overall functional status. Table 2 shows the effect of treatment on functioning.

Table 2 : Effect of Treatment on Function
Function Improved (%) No change (%) Worsened (%)
Self-care 90.3 9.3 -
Mobility 78.6 19.4 1.6
Household chores 81.0 17.7 0.8
Have an income 33.9 65.3 0.4
Schooling 65.7 24.2 9.7

Seventy nine percent of the sample reported that children improved following treatment, 18.6% showed no change, and 2.4% worsened. Self-care (90.3 %), mobility (78.6%), and ability to do chores (8 1. 0%) are noted particularly to have improved. School performance is also reported to have improved in 65.7% of children, although 9.7% actually worsened. This decline may have been due to time lost from academic studies during recuperation from surgery. Finally, the ability to contribute financially to the family is reported to have improved in 33.9% of cases.

Section B: Programme Questions

A second stage of analysis provided answers to a series of questions about the children, posed by HRDC staff, which were intended to provide insights into HRDC programme development in the areas of education, training, and treatment. A series of independent variables were correlated with various variables of function to determine whether there was a relationship between them.

Geographic Region and Mobility : Staff felt that children's mobility could be associated with the geographic region in which they lived, since the terrain varies significantly in Nepal. Approximately 80% (199) of the children live in the hill districts, yet there is no statistical association of geography with mobility for the sample of children. Thus, disabled children are equally mobile in any region in Nepal. It is important to note that 80% of HRDC children live in the central development hill region. This concentration of clientele may be due to improved access to disability treatment services, to local case detection capabilities, or to other socio-economic reasons.

Gender and Attitudes : Child gender was anticipated to be associated with parental attitudes in a variety of ways which could limit opportunities for disabled girls. However, the analysis reveals that parental knowledge, beliefs, and behaviours regarding disability, including the seeking of treatment, are not associated with the gender of the child. Similarly, discharged male and female children receive equivalent amounts of physiotherapy exercises, indicating that parents actually carry through on their beliefs. Finally, males and females have equivalent social function scores, indicating that they have similar opportunities for social interaction and education. Thus, parents of female children who have been discharged by HRDC appear just as informed about disability as parents of male children. However, the disproportion of males to females in the HRDC population indicates the presence of a powerful referral bias, regardless of the families' eventual positive attitudes towards female disabled children. Further community education efforts appear to be warranted, especially in light of the fact that those who go through the HRDC programme become better informed about disability and treat their children equitably.

Family Size and Social Function : It was anticipated that larger Nepalese families would not be able to provide sufficient attention to disabled children, with the result that child social function would suffer. However, even with an average family size of 5-7 persons, there does not appear to be a negative effect of family size on social function, nor on children's abilities to contribute to the family and be integrated into community activities.

Literacy and Child Education : Adult literacy among parents and caregivers was anticipated to be positively associated with child education. However, a low correlation was found between the literacy of adults and the extent of the child's education. Thus, child education appears to be valued by adults of all literacy levels. Nonetheless, some important gaps in childhood education patterns are observed, as shown in Table 3.

Table 3 : Educational levels of children, years of completed education
Age None 1-3 4-6 7-9 >9 Total
3-5 2 1 0 0 0 3
6-8 16 25 1 0 0 42
9-11 7 22 9 1 0 39
12-14 4 10 18 0 1 33
>15 18 12 35 36 30 131
Total 47 70 63 37 31 248

Over 18% (45) of the children have no formal educational experience, even though they are of eligible age. While this is understandable with older children, where access to education may have been a problem in the past, it appears that a number of children between 6-8 years are still not being enrolled in school.

Diagnosis and Function : HRDC staff suggested that diagnosis was a key factor in determining childhood self care, mobility, and social function. In the self care area, low scores are obtained by children having trauma and by a number of children in the category of those with cerebral palsy and other neurological impairments affecting upper extremity function. High self care scores are reported primarily by those with post polio syndrome, chronic osteomyelitis, and clubfoot diagnoses, most of which affect the lower extremities. In all but one of the diagnostic groups, approximately 80% of the children have a high degree of mobility. The post polio group has a relatively low percentage of children (57.1%) with good mobility. However, there is no statistically significant relationship between diagnosis and the frequency of physiotherapy exercise. There are also no observed relationships between diagnosis and social function, indicating that social stigma is not attached to particular orthopaedic problems. Finally, diagnosis was investigated with respect to perceived effectiveness of treatment. Overall, there is a statistically significant relationship between diagnosis and the perceived effect of treatment. As might be expected, those with conditions such as clubfoot are usually perceived by parents to have improved, while those with neurological conditions are often perceived to make little change.

Parental Attitudes and Social Function : Parental attitudes about disability were anticipated to be associated with their children's mobility or social function scores. However, there was no significant relationship between child function and parental attitudes. Thus, parents appear to be able to separate their own anxieties or worries about their child from their broader attitudes towards disabled persons. This indicates a mature acceptance of disability which is unrelated to myth, superstition, and self-blame.

Marriage and Physical Function : Staff anticipated that physical function would influence a child's social development. However, children's general social function is not influenced by their self care abilities, mobility, or frequency of exercising. Thus, disabled children appear to be socially accepted in Nepal and are allowed to participate in most community activities. An interesting exception was noted in the area of marriage. Of those children over 15 years, only 19% (25) are married, which appears to be low in comparison to other Nepal studies (3). In this study sample, marital status is not associated with perceived effectiveness of treatment. However, there is a statistically significant association between marriage and both diagnosis and mobility, indicating that those with certain diagnoses (other, trauma, post polio, burns) have a greater chance of marriage. However, this chance also depends on their having high mobility levels. Thus, acceptance for marriage is greater if the child is mobile, again indicating the importance of a focus on rehabilitation for the process of social integration.

DISCUSSION

The authors recognise that, although impairments are recognised almost universally, disability and handicap are relative concepts (16,17). Thus, disabled children's demographic information and functional status are reported in relation to Nepalese socio-cultural norms. This allows comparisons of the situation of disabled children and their families to others in Nepal. It also allows the generation of appropriate recommendations which are hopefully culturally sensitive.

Gender Disproportion : The HRDC programme appears to be effective in promoting the functional status and parental acceptance of disabled girls equivalently to disabled boys. Thus, the programme's educational strategy to decrease discrimination appears to be working. Although there is equality in treatment and outcomes for boys and girls, the proportion of girls entering the programme is less than boys and requires a positive intervention on the part of HRDC. The programme can only be effective for those whom it reaches. The under-representation of female children in the treated population is a major concern and there is no apparent clinical or demographic reason for the discrepancy. The ability to detect female disability may be improved by employing women field workers to the extent possible in Nepal. In other sectors of health, the use of women field workers has made dramatic differences in referral and health patterns (3). As an alternative, traditional birth attendants may be utilised to detect disability through the use of local women's networks. Training as well as respect for the traditional knowledge of local people, would be required for this strategy. However, there are important local social benefits to be gained through modelling an active acceptance of girl children.

CBR Field worker Effectiveness : Field workers are effective in promoting the health and functional status of these disabled children such that their condition is probably optimal upon their discharge from active treatment. There are no major unresolved problems among children which are not predictable from their impairments, and field workers deserve much credit for this. If HRDC wishes to maintain the high quality of service and to expand the programme to other districts, careful planning, assessment of needs, and available and sustainable resources are required. Research in other CBR agencies suggest that a good community base, supervision, training, and sound record keeping are important in scaling up activities (17). Field staff should be selected carefully, preferably from the same geographic region in which they will work. Effective motivational programmes, including advanced training and responsibility for decentralised programme management, should be considered for the field workers.

Alternative Resources for Rehabilitation : As structural adjustment policies are implemented in Nepal and elsewhere, there may be fewer national and international resources available for rehabilitation and disability prevention programmes. Externally funded programmes without indigenous financial reserves may have to develop alternative strategies for their long term survival. In the future, community level programming may require alternate sources of financial and human capital. Expansion of fieldwork through collaboration and capacity building with local CBR networks is one solution (18). Furthermore, small investments in appropriate community economic enterprises, managed by local persons, could provide sustainable financing of activities undertaken by NG0s. Such an approach may broaden donor interest in disability work as it would include a community economic development orientation.

Education of Disabled Children : Reasons for generally low educational completion rates in Nepal include economic and social factors, inadequate community participation in the provision and maintenance of physical facilities, low levels of public awareness with regard to the value of education, inappropriate curricula, inadequate numbers of trained teachers, and limitations in supervision and monitoring Nonetheless, the amount of education which discharged disabled children receive is comparable to that in the rest of Nepal. This achievement could be enhanced further by collaborating with other parties to advocate for the integration of all disabled children into the public education system.

Rehabilitation Service Co-ordination : In contrast to many industrialised countries where duplication and co-ordination of rehabilitation services is a primary concern, in Nepal the problem is under-servicing. Regional NGO distribution is concentrated heavily in the more accessible areas of the country. However, even here there is no single agency or ministry responsible for providing services to disabled persons. Additionally, the small number of CBR programmes operated by NG0s are very specialised in their coverage (3). The newly formed CBR Network-Nepal could take an expanded co-ordination role in conjunction with the government, provided that the state can identify a clear line of responsibility and autonomy. A national resource centre for CBR could promote skill development, publicise the need for disability services at the community level, demonstrate the advantages of CBR, and co-ordinate the development of services so that basic coverage is provided across Nepal before unregulated expansion occurs within local agencies. Regional CBR centres, similar to those developed in remote parts of India and Pakistan, could be used in Nepal where access and transportation are such limiting factors. At the minimum, a CBR co-ordinating committee would be of value for agencies working in this area.

Local Community Capacity : It is recognised generally that 'point of contact' health and disability services are preferable to travelling long distances for care. To make this strategy effective, however, requires increasing community and family participation, providing caregivers with knowledge on prevention and treatment, increasing the capacity of front line workers to deliver treatment rather than only to detect and refer cases, and encouraging the development of local family support groups. Development of public education materials (videotapes, audio tapes, posters) on prevention, identification, and basic treatment methods is a high priority in this approach. Faith healers (dhami/jhankris) could be utilised to provide support for these efforts. Traditional birth attendants and community health volunteers who receive government support and training could also be utilised for detection and referral if a solution to motivational problems can be found. Finally, it would be beneficial if these initiatives were to derive from a national consensus to avoid controversy within the health professional sector.

CONCLUSION

This follow-up study has described the status of a group of disabled children who have undergone treatment for a variety of orthopaedic and other conditions at HRDC in Kathmandu, Nepal. The group is a representative sample of a relatively stable population which has been discharged from active treatment status. Overall, the status of discharged disabled children in HRDC's care is highly satisfactory. The TOE instrument utilised in this study had been demonstrated previously to be reliable when applied by field workers. Its validity has now been demonstrated through analysis of this study's results and through the generation of possible explanations for questions raised by HRDC staff about their programme.

*Hospital and Rehabilitation Centre For Disabled Children
P.O Box 6757, Kathmandu, Nepal

ACKNOWLEDGEMENT

The authors wish to acknowledge the unique contributions of Dr. Ashok Banskota, Consultant Orthopaedic Surgeon, HRDC, and Chairman of the Friends of the Disabled; Dr. Saroj Rijal, Orthopedic Surgeon, HRDC; Dr. Malcolm Peat, Executive Director of the International Centre for the Advancement of Community Based Rehabilitation, Queen's University; and Ms. Cheryl Beach, Department of Rehabilitation Sciences, Hong Kong Polytechnic University, for their encouragement and support of this project.

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Title:
ASIA PACIFIC DISABILITY REHABILITATION JOURNAL Vol. 10 @ No. 1 @ 2000

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