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 Projects, St. Mary, Jamaica, using a checklist, and of 113 HCWs in St Mary and Kingston who completed a questionnaire. Half of the 19 CWDs referred by HCWs to hospitals 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 explanation given, and only 4 understood the instructions of HCWs. These problems led to unrealistic expectations about the outcome of rehabilitation. 13 caregivers attributed disability of their CWDs to negligence, carelessness or poor treatment by HCWs during pregnancy or the early neonatal period. 87% of the HCWs, particularly Community Health Aides (CHAs), acknowledged at least some responsibility for the care of CWDs; but 10%, notably some nurses and midwives, denied responsibility. 90% referred patients for further care and 90% thought that they had made an impact on caregivers' 'beliefs'; but more than half the CHAs, and 25 to 30% 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)