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

ABSTRACT

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.