Formal handling routines in Jamaican infants. Knowledge, attitudes and behaviour

This study aimed to determine the frequency of use and the knowledge, attitudes and behaviour regarding the Formal Handling Routines (FHR) in rural and urban Jamaican infants. Analysis was made of the area of residence and educational level of the caregivers. The study included 194 caregivers, thirty-three community rehabilitation workers (CRWs) and 30 health care workers (HCWs). Depending on the level of understanding of the respondents, questionnaires were either self-administered or a personal interview was conducted. Caregivers with tertiary education differed significantly from the other caregivers both in frequency of use of the FHR and knowledge, attitudes and behaviour. Caregivers with tertiary education used the routine much less and had more negative attitudes towards it. This might be due to their better financial position, which allowed them to have helpers who cared for their children. HCWs also had significantly more negative beliefs about the FHR than CRWs and caregivers. It is possible that HCWs carried over their knowledge, attitudes and behaviour to the caregivers but if they did, it did not influence the majority of caregivers.(Au)

Progress in the development of services for persons with disabilities in Jamaica, 1988 to 1997

The aim of this study was to determine the extent of services for persons with disabilities in Jamaica and the progress made in the past 10 years. A questionnaire was sent to 23 agencies; 22 responded. The main constraints were poor data collection and lack of current prevalence data. 14 agencies provide for all types of disability; the rest cater for single disability groups. Eight provide mainly special education programmes, three mainly assessment services, three provide community base rehabilitation (one, early intervention; two, medical rehabilitation), three provide residential care and nine vocational services. Coverage varies considerably and there is inequitable distribution of services for adults compared with children. The majority of clients are in the rural areas and there is marked inequity among the parishes. The largest disability group is those with intellectual disabilities, followed by physical, hearing and visual disabilities. Intellectual disability is under-served in relation to its prevalence. The school age groups is the main beneficiary. In all categories for disability and in most age groups more males receive services than females. There had been an increased demand for services over the past 10 years, but only a small increase in provision. The main expansion has been in community based rehabilitation, moving from 750 clients in 1988 to 2 365 now; and special education, with doubling of the number of school places. The great need for psychological services identified in 1988 has not been met. There have been increase in budgetary provision to offset rapidly increasing costs but very little investment in new programmes.(AU)

Experience of parents of children with disabilities with health services in Jamaica

In order to determine the experiences with health services of caregivers of children with disabilities (CWDs), and the attitudes of health care workers (HCWs) towards CWDs and their caregivers, a survey was conducted of 26 caregivers of clients of 3D project, St. Mary, Jamaica, using a checklist, and of 113 HCWs in St. Mary and Kingston who completed a questionnaire. Half of the CWDs referred by the HCWs to hospital in Kingston because of the lack of facilities in St. Mary eventually defaulted because there was no apparent improvement. 10 caregivers said that the cause of the disability was not explained, three others did not understand the explanations given, and only 4 understood the instructions of HCWs. These problems led to unrealistic expectations about the outcome of rehabilitation. 13 caregivers attributed disabiltiy of their CWDs to negligence, carelessness or poor treatment by HCWs during pregnancy or the early neonatal period. 87 percent of the HCWs, particularly Community Health Aides (CHAs), acknowledged at least some responsibility for the care of CWDs; but 10 percent, notably some nurses and midwives, denied responsibility. 90 percent referred patients for further care and 90 percent thought that they had made an impact on caregivers' "belief"; but more than half the CHAs, and 25 to 30 percent of the other groups, expressed dissatisfaction with their management of CWDs. This study has highlighted inadequacies in the care of CWDs in St. Mary and indicates that more appropriate preparation of all health staff for this important aspect of their work is required.

Experience of parents of children with disabilities with health services in Jamaica

In order to determine the experiences with health services of caregivers of children with disabilities (CWDs), and the attitudes of health care workers (HCWs) towards CWDs and their caregivers, a survey was conducted of 26 caregivers of clients of 3D project, St. Mary, Jamaica, using a checklist, and of 113 HCWs in St. Mary and Kingston who completed a questionnaire. Half of the CWDs referred by the HCWs to hospital in Kingston because of the lack of facilities in St. Mary eventually defaulted because there was no apparent improvement. 10 caregivers said that the cause of the disability was not explained, three others did not understand the explanations given, and only 4 understood the instructions of HCWs. These problems led to unrealistic expectations about the outcome of rehabilitation. 13 caregivers attributed disabiltiy of their CWDs to negligence, carelessness or poor treatment by HCWs during pregnancy or the early neonatal period. 87 percent of the HCWs, particularly Community Health Aides (CHAs), acknowledged at least some responsibility for the care of CWDs; but 10 percent, notably some nurses and midwives, denied responsibility. 90 percent referred patients for further care and 90 percent thought that they had made an impact on caregivers' "belief"; but more than half the CHAs, and 25 to 30 percent of the other groups, expressed dissatisfaction with their management of CWDs. This study has highlighted inadequacies in the care of CWDs in St. Mary and indicates that more appropriate preparation of all health staff for this important aspect of their work is required.(AU)

Experiences of parents of children with disabilities with the health services in Jamaica - abstract

A survey was conducted in the parish of St Mary, Jamaica, in 1996, to gain a better understanding of experiences of parents of children with disabilities (CWDs) with health services, and to determine the attitudes of health care workers (HCWs) towards CWDs and their parents. Twenty-six personal interviews were conducted with the caregivers of clients (CWDs) of 3D Projects using a predefined checklist as a guideline, and 113 HCWs completed a questionnaire with closed and open-ended questions. The health services in St Mary do not offer much special help to CWDs, so doctors referred CWDs to hospitals in Kingston. After a while parents stopped going there because they did not see any improvement. Parents claimed the information given by medical personnel was too vague or too difficult to understand. They therefore have unrealistic ideas about the rehabilitaton possibilities for their children. It seemed that parents with a positive attitude towards their child and the disability had better experiences with health services. The majority of problems parents experience have to do with communication. HCWs are not adequately trained to manage all aspects of disability. Therefore they only feel responsible for medical care and treatment. There is also an educational barrier between doctors and parents. This, together with inadequate training, results in doctors not explaining at the parents' level of understanding. The findings have a wider implication than just the childhood disability field as it was found that many parents blame medical personnel for their children's disabilities, believing that unexplained procedures, treatment or neglect damaged their children. Clearly there is a need for more appropriate preparation of all health staff so that parents get full and clear information from the start. It is incumbent on medical staff to find ways to communicate more effectively so that parents can understand, use, follow through and get information even when no medical treatment is necessary. (AU)

Neighbourhood support of families with a disabled child: observations on a coping strategy of caregivers in a Jamaican community-based rehabilitation programme

In Jamaica, a low degree of practical helpfulness of neighbours of families with a disabled child has been described. This seems to cast doubt on the World Health Organisation's concept of community-based rehabilitation which simply assumes that the community is a source of support. Our study tries to elucidate which reasons, in a Jamaican socio-cultural setting, make neighbours give support to or withhold it from disabled children and their caregivers. A concept of neighbourhood help is identified, according to which help is something to asked for and provided under exceptional circumstance only. Caregivers claim to give and receive support in child rearing within the limits of this definition, generally irrespective of the presence of a disability. The impression that neighbours are unconcerned can arise when the support needed becomes too extensive to fit into the local definition of neighbourhood help which is more likely in the case of disabled children.(AU)

Supernatural beliefs about the causes of disability in three areas in Jamaica - abstract

The purpose of this study was to determine various supernatural beliefs to obtain baseline information before commencing a public education programme. A stratified sample of 300 persons of ages 5, and 12 occupational groups was surveyed in each of three areas, Spanish Town, Linstead/Ewarton and St. Mary, to get rural and urban samples. A total of 898 responses were analysed of which 42 percent were male and 58 percent female. There were proportionately more in the age groups 20 to 40 years (52 percent) and, intentionally, more in the teaching and health care worker categories (115 and 80, respectively). Of the five questions on supernatural beliefs, 46 percent of the whole sample agreed that "God gave us handicapped children to show our charity". An average of 18 percent of persons agreed with statements "A disabled child is a punishment for a sin". "Some cases of disability are still caused by evil spirits" and "if a pregnant women sees a handicapped person, her child will be handicapped". The most significant variables were age and occupation. The youngest and oldest age groups agreed most with the statements and the 30-40-year-age group least. Teachers and professionals disagreed most with the statements (9 percent) and housewives, unemployed and agricultural workers agreed most (37 percent). A mean of 22 percent of health care workers agreed with the statements. If persons with disabilities are to be affected freely in their communities, these attitudes will be a barrier. Since health care workers occupy a strategic position in interfacing with parents of disabled children, their beliefs will also need to be changed. Teachers, who appear to be more enlightened, could be used in schools to correct superstitions passed on by the grandparents to their grandchildren (AU)

Simplified assessment of handicaps in children

The assessment of disabled children usually requires experienced, trained professionals. WHO, in their manual "Training the Disabled in the Community" devised a questionnaire to be used by community workers (CWs) to assess handicaps and develop rehabilitation plans. This has been used for over 14 years in many third world countries but has never been evaluated. Our study on 5,468 Clarendon children allowed us to do a full evaluation of its use in the hands of CWs. A previous paper reported inter-rater reliability and facility of use. The questionnaire was adminstered to the caregivers of a subsample of 1219 2-9 year old children who tested positive on the ten question screen for disability and 8 percent of screen negative children in a population based survey conducted by CWs in 1987 to 88. Negative responses were labelled "handicaps". These children were referred for medical and psychological assessment to determine wether they had a disability. The responses to the questionnaire were analysed for achievement of milestones of development, associations with severity of impairment and disability, and with other handicaps. All screen negative children reached the milestone of moving round the house in 2 years, self feeding, washing, toiletting, and dressing by 6 years and understanding and expressing speech by 5 years. 100 percent were going to school and participating in family activities by 5 years and doing daily household tasks by 6 years. "Handicaps" were found in 0.5 percent of screen negative, 12 percent of screen positive, 4 percent, 19 percent, 38 percent and 84 percent of children with no impairment, and mild, moderate and severe degrees of disability respectively. 67 percent of children with disabilities had no handicaps and 46 percent of children with handicaps had no disability. This investigation has given a useful baseline for using milestones of development to indicate "handicaps" in children. Failure to achieve these correlates well with severity of impairment and disability. The 67 percent of disabled, non-handicapped children also correlates with an earlier finding that 30 percent of disabled children can benefit from CBR. These "handicaps" are amenable to rehabilitation by CWs. However, the questionnaire needs restructuring to facilitate interpretation and meaningful action. (AU)

Recent developments in low-cost screening and assessment of childhood disabilities in Jamaica. Part 2: Assessment

This paper summarise the requirements and criteria for assessment of childhood disabilities. It reviews recent research carried out in Jamaica and outlines procedures for medical and psychological assessment used in the International Epidemiological Study of Childhood and Disability as well as local experience in community-based rehabilitation. While the medical assessment procedures were considered to be validated, there is an urgent need for local research and development in psychological assessment. These approaches, while not perfect as yet, bring the possibility of local community capability closer. They will require changes in professional attitudes, training of health and educational personnel, and changes in the service systems, so that screening and assessment can be integrated into existing services. However, although this will obviate the need for new, specialised administrations, improved linkages and lines of referral will be necessary.

Recent developments in low-cost screening and assessment of childhood disabilities in Jamaica. Part 2: Assessment

This paper summarise the requirements and criteria for assessment of childhood disabilities. It reviews recent research carried out in Jamaica and outlines procedures for medical and psychological assessment used in the International Epidemiological Study of Childhood and Disability as well as local experience in community-based rehabilitation. While the medical assessment procedures were considered to be validated, there is an urgent need for local research and development in psychological assessment. These approaches, while not perfect as yet, bring the possibility of local community capability closer. They will require changes in professional attitudes, training of health and educational personnel, and changes in the service systems, so that screening and assessment can be integrated into existing services. However, although this will obviate the need for new, specialised administrations, improved linkages and lines of referral will be necessary. (AU)

Recent developments in low-cost screening and assessment of childhood disabilities in Jamaica: part 1 screening

This paper reviews and summarises the requirements and criteria for the screening of childhood disabilities. It reviews recent advances in research carried out in Jamaica and outlines available techniques for the screening of cognitive, motor, speech, hearing and visual disabilities and fits. The availability of validated, simple, low-cost techniques that can be used by community workers facilitates the conduct of surveys for the planning of programmes and the identification of cases for rehabilitation.

Recent developments in low-cost screening and assessment of childhood disabilities in Jamaica: part 1 screening

This paper reviews and summarises the requirements and criteria for the screening of childhood disabilities. It reviews recent advances in research carried out in Jamaica and outlines available techniques for the screening of cognitive, motor, speech, hearing and visual disabilities and fits. The availability of validated, simple, low-cost techniques that can be used by community workers facilitates the conduct of surveys for the planning of programmes and the identification of cases for rehabilitation. (AU)

Portage guide to early intervention: cross cultural aspects and intra-cultural variability

The issues arising from implementing an early intervention service, developed in the rural United States in the late 1960s in a range of different cultural contexts over a period of a quarter of a century, are explained. Services from India, Bangladesh, Jamaica and the United Kingdom are compared. As well as considering cross-cultural aspects of Portage, variability within one country, the United Kingdom, is considered by comparing one service in an inner-city area and one in a rural area. (AU)

Estimates of the prevalence of childhood seizure disorders in communities where professional resources are scarce: results from Bangladesh, Jamaica and Pakistan

Although numerous estimates of the prevalence of seizure disorders in populations in the less developed world have now been published, these estimates are difficult to interpret due to lack of comparability of study methods and criteria for case definition. The results reported in this paper are from a large, collaborative study of disabilities in 2- to 9-year-old children in which standard research procedures and case definitions were used in three diverse populations (located in Bangladesh, Jamaica and Pakistan). A two-phase study design (screening followed by professional evaluations) was used in this study allowing for the professional evaluation to serve as the criterion in the estimation of prevalence, even for rare disorders. As a result, the prevalence estimates reported here have a high degree of comparability across populations and exhibit unusually strong validity for population surveys. Febrile seizures were the most common type of seizure history in all three populations, with point estimates of lifetime prevalence rates of epilepsy (recurrent unprovoked seizures) ranged from 5.8 to 15.5 per 1000. Lifetime prevalence rates of neonatal, all provoked and all unprovoked seizures, as well as estimates of the prevalence of active epilepsy, are also reported.(AU)

Screening for childhood disabilities in Jamaica: the use of ten question screen in Clarendon - abstract

No screening test for childhood disability in Jamaica has previously been formally evaluated. The present report describes the validity of the Ten Question Screen (TQ) used by community workers in Jamaican component of the International Epidemiology Study of Childhood Disability, done in the parish of Clarendon. It was previously reported by this study that approximately nine per cent of children aged 2-9 years had mild, moderate or severe disabilities (one or more of: motor, visual, hearing speech or cognitive disabilities, or fits). In Clarendon, 5,461 children were screened, using the TQ and a sub-sample of 993 was subsequently assessed by a doctor and a psychologist for the presence of disabilities. The TQ proved to be an acceptable, reliable instrument and was relatively quick and easy to administer. Sensitivity was 41 percent overall, and 64 percent for moderate/severe disability. Specificity was high, at 87 percent and 86 percent, respectively. Due to the low prevalence, the false-positive rates were high, 75 percent and 90 percent, respectively. False-negative rates varied from 2 to 12 percent in the different age/sex groups, with overall rates of 6 percent for all disabilities, combined and 1 percent in serious disabilities. The lack of sensitivity was mainly due to failure to identify disabilities , especially mild cognitive disabilities, in older boys. The unacceptably high rate of false positives on the screening test indicates the need for a second level of screening to decrease the false-positive rates (increase the positive predictive value) of the test. The reasons for the high rate of false-positive results in using the Ten Question Screen and the possibility of reducing thisby using probes and an additional questionnaire were also investigated. In the 522 false-positive cases, analyses were performed of concordance of responses for three different categories of interviewer, of other disabilities not among the ones being detected, impairments, handicaps and the possibility of the parent being excessively worried about the child's health. The use of probes in TQ positive cases and the Activities of Daily Living Questionnaire (ADLQ) were tested to determine whether false positives could be reduced. Forty-four per cent of respondents in false-positive cases changed their response from positive to the community worker to negative to the doctor. Forty-eight per cent of false-positive cases had other disabilities or impairments and 4 percent had developmental handicaps. Worry was slightly more common among mothers of false-positive cases. Use of the probes and ADLQ reduced the false-positive rate (AU)

The prevalence of childhood disability and related medical diagnosis in Clarendon Jamaica

In a population-based survey in a defined area in the parish of Clarendon, Jamaica, the prevalence of six types of childhood disabilities was sought. All children aged 2-9 years who screened positive for disability, with 8 per cent of children screening negative (out of a total of 5,468 children), were assessed by a physician and a psychologist. Disabilities were categorised by types and levels of severity. The estimated prevalence rate for all types and levels of disabilities was 93.9 per 1,000 children and for serious disability was 24.9 per 1,000. The rates for specific disabilities showed wide variation (cognitive, 81/1,000; speech, 14/1,000; visual, 11/1,000; hearing, 9/1,000; motor, 4/1,000; seizure, 2/1000). Of the disabled children, 70 per cent had only one disability, 23 per cent had two and 6 per cent had three or four disabilities. If disability is to be seen as a major outcome of a range of interacting factors, then these prevalence rates, taken with the specific aetiologies, would provide a framework for planning preventive and rehabilitative interventions. (AU)

Service needs of children with disabilities in Jamaica

We investigated the service needs of children attending a medical assessment as part of a two stage survey of 2 to 9-year-old children in mid and south Clarendon, Jamaica. Parents were asked about symptoms relating to six different disabilities: visual, hearing, speech, motor, cognitive and fits. Following medical and psychological assessment, a diagnosis of mild, moderate, severe or no disability was made. For children with disabilities, the frequencies of five possible types of intervention recommended by the physician were analysed and related to the prevalence of the six disabilities in the parish. To estimate the needs of the Jamaican child population the figures were extrapolated based on an estimate of 1 million children under the age of 15 years. These needs were then compared with places in existing services. Of the disabled children, 62 percent needed special education, 29.5 percent needed community-based services, 21 percent needed spectacles, 21 percent needed specialist referral, and 6 percent required medical treatment. Although the vast majority of these needs are not met, many more could be met in the community if existing health and education personnel are trained in basic techniques of screening and assessment. (AU)

Parent evaluation of community based rehabilitation in Jamaica

nuch may be gained by intervening early in the lives of disabled children. While children may benefit from making developmental progress, early intervention may also help improve parental understanding, acceptance, competence, parent-child interactions, and overall integration into community services. Advocates also indicate their preference for direct parental involvement in teaching in home-based programs. The nongovernmental organization, 3D Projects, offers community-based rehabilitation services to more than 300 disabled children in rural south-central Jamaica. The parents of all clients receiving home-based services were interviewed to help assess the projects' impact. Home visits were much appreciated, with respondents especially in favor of the semi-academic and physical exercises. Respondents felt that they were quite involved in the training of their children. 92 percent were able to say which disability inflicts their child. While no baseline data were taken for this study, this degree of knowledge is significantly higher than that found in samples of individuals from comparable studies. 50 percent desired additional information related to their child's schooling, behavior, and speech and learning problems. More parental education is therefore warranted. 67 percent stated that the program has increased their sensitivity and concern for their children, 76 percent felt that the condition of their child is improving, and 93 percent generally felt positive about the program and would recommend it to other parents (AU)

Identification of childhood disability in Jamaica: the ten question screen

This is the first in a series of papers that report the testing of two instruments for the identification and assessment of childhood disability by community workers (CWs) in Third World countries. It is part of the International Epidemiological Study on Childhood Disability. The Ten Question Screen (TQ) was used as the main instrument to identify disability in a two stage population-based survey of 5478 children aged 2-9 years in Clarendon, Jamaica. In the second stage, TQ positive and 8 percent of the screen negative controls were professionally assessed by a doctor and a psychologist using standard criteria on the main classification system of the ICIDH. Sensitivity of the TQ as a whole varies in different strata of the group and amongst different disabilities, from perfect in girls under 6 years, fits and motor disabilities and for serious disability in all groups except boys over 5 years with a cognitive disability. Specificity was good but the false positive rate was unacceptably high at 74 percent. It was concluded, firstly, that the validation of a simple questionnaire of perceptions of behaviour against objective measurments of impairments was perhaps not fair to the TQ. In spite of this, the TQ would be a very useful instrument in collection disability data for identifying people in need of rehabilitation help, if a way of reducing false positive could be found. (AU)