Sot. Sci. Med. Vol. 20, No. 6, pp. 585-588, 1985 Printed in Great Britain

0277-9536/85 $3.00 + 0.00 Pergamon Press Ltd

RESEARCH NOTE

HANDICAPPED INDIVIDUALS

ANN HARRISON

IN KUWAIT

Department of Community Medicine and Behavioural Sciences, Faculty of Medicine, Kuwait University, P.O. Box 24923, Safat, Kuwait

Abstract-A large-scale community screening study is proposed for Kuwait, using a schedule based on the 1980 WHO Classification of Impairments, Disabilities and Handicaps. The needs for accurate prevalence data are reviewed from the standpoints of establishing aetiological patterns, pinpointing opportunities for prevention and furnishing a sound basis for planning in a country with a rapidly growing population and still-developing network of care services. A permanent mechanism for monitoring prevalence trends and service needs is proposed in the form of a Multidisciplinary Handicap Register. Details of these proposals and their feasibility are discussed in the light of previous work.

The past 30 years has seen the development in Kuwait of a network of public and private agencies dealing with the needs of handicapped individuals and their families [l 1. The state medical system includes specialist neurological, orthopaedic, rehabilitation, ophthalmic, audiology, psychiatric, developmental, and genetic assessment services and allied therapy, prosthetic and aids facilities. The Ministry of Social Affairs provides residential care for physically, mentally and socially handicapped children and adults, and programmes of training and day care; residential and support services are also offered by the Kuwait Handicapped Society, an independent charity. Special education for childen with perceptual, emotional, physical and intellectual problems is available within the State school system. Both public and private agencies organise sports and other recreational activities; and financial assistance is available from a variety of State, religious and charitable organisations.

As in many other countries, facilities have developed on a largely ad hoc basis: to meet needs as these have been identified. Rational future planning requires sound prevalence data, a detailed profile of the types of difficulties handicapped individuals and their families face, and an assessment of the adequacies and shortcomings of services currently available. The aims of an ongoing study ‘Handicapped individuals in Kuwait’ (Kuwait University Research Project MC 015) are to collect such data, and to investigate the feasibility of setting up a permanent system for monitoring prevalence changes and service utilisation, and for projecting future demands, based on a Multidisciplinary Handicap Register.

PREVALENCE DATA

The prevalence of different impairments, disabilities and handicaps in Kuwait cannot be properly ascertained using existing records. Incompleteness, mconsistencies and duplications render any inter- pretation problematic; and as in other societies, it is to be expected that the majority of handicapped and disabled individuals will be too slightly affected to need

specialist services [2], and so will not figure in such data. Another major problem is that non-Kuwaitis, who form 59 % of the population, have only limited access to certain facilities; figures from such agencies are likely, therefore, to be gross underestimates.

In order to achieve sound prevalence figures for Kuwait, a large-scale community survey is to be carried out, covering all nationality groupings. Every Kuwaiti citizen and every legal resident in Kuwait is registered with the Ministry of Interior, and the proposal is to draw a 9 % random sample from these records. Previous experience [3] indicates that such an approach is practical, and that families are willing to participate and provide detailed information on relevant issues [4] when contacted by mature, highly- trained interviewers. The population of Kuwait is unused to surveying, and it is difficult and time- consuming to locate people using the residency data available; for these reasons, postal surveying was rejected.

The questionnaire which has been developed serves both as a fast screening tool, similar to ones used in previous community surveys [2, 51, and for furnishing a detailed profile of any disabilities and handicaps reported [6]. Sixteen screening probe questions are included, covering a range of physical, personal and social problems. For example: Does anyone in the household have difficulty- walking without help?- manipulating hand-held objects without help’?- having a bath, shower or wash without help?- coping with school without help?-developing or maintaining social relationships without help? The help referred to may be the assistance of another person, the presence of an aid or adaptation, special schooling or care or special consideration. The age ofa child is taken into account [6], and only cases of excessive help or difficulty are logged. Whenever a problem is identified, three aspects are pursued: the precise nature of the difficulty, the help needed, and any problems this creates for the individual and his family (Fig. 1). The schedule contains finely differen- tiated response options in an attempt to obtain a full and precise definition 6f these three aspects. The first section seeks to detail the person’s disability and the

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586 Research Note

SCREENING PROBE DETAILS OF DIFFICULTY DETAILS OF HELP NEEDED PROBLEMS CREATED

Q 8 Has difficulty 1 Cannot produce an

going up and appropriate pattern of down steps and movements to ascend or stalls without descend starrs help7 2 Can produce an approprrate

pattern of movements, but

1 YES 2 NO cannot support his weight to ascend or descend stairs

unarded 3. Can go up and down steps

and stairs alone, but finds it parnful or difficult to do so

4 Can go up and down steps or stairs alone, but IS

frightened to do so 5 Is too confused or retarded

to ascend or descend steps safely

6 Is too confused or retarded to decide approprrately when to ascend or descend starrs

7. Has vrsual problems

1.

2.

3.

4.

5.

6.

Needs to be carried up and 1 Is restrtcted to

down steps or stairs srngle storey

Needs to be physically dwellings

supported to ascend or 2. Cannot access the descend steps and stairs upstarrs areas of Needs to be encouraged to the house

ascend or descend steps or 3. Restrrcts person’s stairs Independently employment

Needs to be guided up and opportunrties down steps and stairs 4 Restricts person’s

Needs supervision when socral life gorng up and down steps 5 Causes and stairs embarrassment to

Copes unaided by crawling the indrvrdual

up and down steps and stairs 6. Causes Copes independently using: embarrassment to

7 Suitable handrails the famrly

8 Stair lrft 7 Involves someone 9. Blind mobrlrty ard in substantial

10 Indoor ramps amount of liftrng,

11, Outdoor ramps physrcal or socral support

8. involves someone In some amount of regular lifting, physrcal or social

support

Fig. 1. Example section from questionnaire.

third his handicaps [6]. The centre column comprises a profile of the practical demands created by the person’s disability: what physical assistance is required, what aids and adaptations are utilised, what special consideration is needed. It also provides some indication of what scope exists for making the individual more independent, easing the load on those providing care and support, and increasing the family’s quality of life. The questionnaire aims to delineate the impact of a person’s difficulties in the context of the resources available; it recognises that a disability does not necessarily create disadvantages if suitable aids and services are available. The schedule makes no assumptions about whether an individual’s difficulties and care needs will be viewed as creating problems for him and his family; but whenever handicaps are reported, these are noted in the final column. The interviewers used will not be medically-qualified. Previous studies [7] indicate that the interviewees are acceptably accurate when reporting impairments in terms of the system affected; and such a schedule [8] will form the basis of the impairment screening component of the survey. In cases where interviewers are unable to obtain acceptable information, or are doubtful of the impairment definition offered, pro- fessional assessment will be attempted.

There are sound reasons to expect prevalence rates in Kuwait which are higher than in Western developed countries; due, for example. to the relatively late development of medical services, greater neglect by patients of ante- and post-natal care, higher incidence rates for crippling diseases such as poliomyelitis in recent decades, the exceptionally high rate of serious traffic accidents [9] and cultural phenomena such as consanguine marriage patterns and import of labour from less developed countries.

Kuwait has one of the highest birth-rates in the world, and an age profile that is strictly pyramidal [lo]. This has several important implications. Even if handicap and disability prevalence rates follow the pattern found in Western societies [2] and increase sharply with age, the majority of handicapped and disabled individuals in Kuwait will nevertheless be young; and so the emphasis of provisions will have to be on education and rehabilitation, rather than on services for the elderly retired. It also follows that the volume and balance of services needed will be subject to considerable shifts. A rapidly growing population means that provisions must continuously expand simply to keep pace. This is already apparent in terms of services for children, but will also affect demand from older age groups (in 20 years time the number of people over 60 is expected to be more than four times what it is today). In contrast to countries with a reasonably stable population, developing a set of services which can cope with current needs is no safeguard for the future. Sound prevalence data are, therefore, essential if demands are to be accurately anticipated and planning delays and wastes elim- inated.

NEEDS AND SERVICE UTILISATION

A representative group of disabled individuals identified by the community survey and families already known to care agencies will be studied to investigate service demands and establish how effectively families and professional groupings interact. Each family will be asked to keep a diary, noting whenever they are approached by an agency or initiate

Research Note 587

contact, why the contact was made and its outcome. Families will register any requests they make, how these are responded to and how successful they prove. Note will be made of any information used and how this was acquired. Families will be asked to record any difficulties they experience in finding out about relevant services, or in establishing and maintaining contact with service professionals. The research team will visit and telephone families regularly, and will keep a careful log of all assistance given. Initially, families will be helped to draw up a list of current needs and of agencies to approach for help; if necessary, research workers will assist families in making contact with relevant services. The aims of this part of the project are to study service utilisation, establish what problems families face in securing the help they need, and how such problems might be solved. The procedure selected fits the model of action research, where the investigator attempts to establish the effects of a procedure (such as providing additional information) not by selectively withholding it from one group, but by carefully monitoring its impact. Setting up experimental and control groups for such a study is not practical, simply because it is not possible to control effectively what information people acquire through the mass media and personal sources, or which professionals they come into contact with.

MULTIDISCIPLINARY HANDICAP REGISTER

Kuwait, because of its small population and geographical area and centralised facilities, makes it feasible to consider setting up a Multidisciplinary Handicap Register incorporating data from all the major medical, social and educational agencies offering assistance to handicapped individuals and their families. A multidisciplinary register has many potential advantages. Firstly, it can provide a complete profile of the person’s medical, social and educational needs, and the services he uses. Such a register has a much greater chance of being up-to-date and complete than one kept by a medical or social service department working in isolation. Take, for example, the case of a Down’s Syndrome infant identified by a genetic counselling unit; such a unit may never see the child or his family again, and so no follow-up information will exist; or an elderly person who is known to a social service department because his family requests home service support, but who is not in contact with any specialist medical agency. In a multidisciplinary register, the child’s progress is monitored through inputs from the different agencies he makes contact with; as he moves from playgroup to school to sheltered workshop to residential home, continuity is maintained. Whichever agency is approached first will be responsible for registering the individual; after which, other speciality files will be opened if and when appropriate. Whenever a professional group is contacted, whether the current needs of the person and his family are social, educational or medical, file information will be updated. A multidisciplinary register provides a natural vehicle for exchanging information between professionals. This is of paramount importance when

dealing with disabled individuals because often their problems are multifaceted and can only be tackled optimally if educators, health care professionals and social workers co-ordinate their efforts.

The Register will be implemented on Kuwait University’s Sperry Univac main frame computer using the MAPPER data-base package. The data- base will consist of a series of independent professional and research files. Each professional group can select or retain its preferred file format, using numerical, comment and graphic data. Each care agency will determine which of its data can be accessed by which other professional groups, and the files will be protected accordingly. Every person registered will have a link-jle containing personal details (age, sex, nationality, contact addresses, residency and passport details), date of registration, disability and impairment summaries, and a listing of what speciality files have been opened. Three main specialityfiles are envisaged (medical, social and educational); the medical file will incorporate genetic and psychological assessment information. An individual’s handicap registration number will form the common identifier for all subfiles relating to him. The MAPPER data-base is inter- active: data sorting and analyses can be carried out on an inter-file, as well as an intra-file, basis. Information from hundreds of thousands of individuals can be accommodated within the system available. Data entry and retrieval will be designed in such a way that non-computer experts working in the various care agencies can open, access and update client files; in its final version, it is envisaged that satellite terminals around the city will communicate with a centralised register.

The register will also contain three experimental files. The impairment:disability:handicup jifile will contain the results of the questionnaire assessment outlined previously. If the practical descriptions this offers of the person’s difficulties, his care needs, and the problems these create for him and his family prove useful, it is expected that this could become a standard test and file for all disabled individuals registered. The service utilisation$le will comprise a diary of contacts between the handicapped individual and the various care agencies whose services he utilises, in order to determine patterns of demand. The third experimental file is called the projected needs file and is aimed at assessing the usefulness, for planning purposes, of asking professionals to speculate what services an individual and his family will utilise in the near and distant future. The genetic counselling and develop- mental assessment centres should, for example, be able to identify children who are likely to require special education. School social workers may detect problems which are likely to result in the family seeking residential care for their child. The natural history of a degenerative disease may lead a physician to predict that in a few years time the person concerned will require home support services, house adaptations or employment retraining. Some predictions will depend on personal information, some will be based on past experience, some will be based on professional training. Whenever a prediction is made, the professional will be asked to rate his confidence; and over the period of the project, prediction accuracy will be evaluated.

588 Research Note

AIMS

Accurate prevalence figures for different impair- ments, disabilities and handicaps are currently not available for Kuwait. Such figures are required both for planning purposes, and from the standpoint of understanding local patterns of aetiology and prognosis and identifying possible avenues for prevention. The fact that the population of Kuwait is expanding very rapidly makes such data indis- pensable. A full-scale community survey as proposed should furnish accurate current prevalence rates; the plan for the future, however, is to develop a permanent Multidisciplinary Handicap Register capable of monitoring prevalence trends and service needs, and projecting future service demands.

Acknowledgement-This research was supported by Kuwait University Research Grant MC 015.

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Medical, Educational, Social and Recreational Servicesfor

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Handicapped Individuals and their Families in Kuwit. Marzouk Press, Kuwait, 1984. Harris A. Handicapped and Impaired in Great Britain. HMSO, London, 1971. Harrison A. Health and illness in Kuwait: a community survey study. J. Kuwait med. Ass. In press. Harrison A. Unpublished Final Report on pilot project MC 015 ‘Handicapped individuals m Kuwait’ to Kuwait University Research Unit, 1983. Patrick D. L., Darby S. C., Green S., Horton G., Locker D. and Wiggins R. D. Screening for disability in the inner city. J. Epid. Communit. Hlth 35, 65, 1981. World Health Organisation. Internationul Classijcation of Impairments, Disabilities, and Handicaps. World Health Organisation, Geneva, 1980. Warren M. D. Interview survey of handicapped people: the accuracy of statements about the underlying medical condition. Rheumat. Rehab. 15, 295, 1976. Patrick D. L. Health and care of the physically disabled in Lambeth. Phase I report. St Thomas’ Hospital Medical School, Department of Community Medicine, London. Bayoumi A. The epidemiology of fatal motor vehicle accidents in Kuwait. Accid. Anal. Preu. 13, 339, 1981. Kurtz R. A. and Chalfant H. P. The Sociology ofMedicine and Illness. Allyn & Bacon, Boston, 1984.