Sivakumar, Shantini; (1997) Evaluation of the services for children with epilepsy and their families in the Borough of Bexley with special emphasis on parental perception. Masters thesis (MSc), UCL (University College London).

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Abstract

Epilepsy is the most common serious neurological condition, affecting 350,000 people in Great Britain, of whom at least 70,000 are children. It is a disorder characterised by brief recurrent usually unprovoked, stereotyped disturbance of consciousness behaviour, emotion, motor function or sensation which results from cortical neuronal discharge. Children with epilepsy face the challenge of growing up healthy with barriers that few of their peers encounter. Many studies have demonstrated the impact seizure disorders have had on children’s academic achievement, emotional growth, development, and resulting low self-concept, in-appropriate levels of dependency and behavioural problems, both at school and at home. Health surveys of school children have indicated that children with epilepsy have a greater prevalence of psychiatric morbidity, do not appear to outgrow their behavioural disturbances and even show a higher risk of taking their own lives. Epilepsy has important socio-economic costs to a population. Longitudinal cost profile studies have shown that in the UK the total annual costs of established epilepsy is around £1930 million, over 69% of which was due to indirect costs (unemployment and excess mortality). The development of services in the UK over the years has been disappointing, this despite a succession of government reports for better care of those with epilepsy, spanning more than three decades. A few local services, for example in Doncaster have achieved good results in improving delivery of care but nationally, rather like the case of diabetes thirty years ago, epilepsy has tended to fall through the net of conventional clinical and service organisations. The last few years have seen the profile of epilepsy and its care rise rapidly. This has been due to a number of factors, notably the launch of new anticonvulsants replacing older ones, some of which introduced as long ago as 1912, newer techniques of neuro-imaging which have a powerful capacity to improve accuracy of diagnoses, and an increasing recognition that more needs to be done as regards psycho-social and educational aspects. Over the years many people had come to accept their seizures and ceased using hospital care and in some cases even general practice care. Although the studies that demonstrate this have been on adult populations, this could be equally true of children. Parental attitudes towards their children’s epilepsy and their coping patterns are aspects that have also emerged as key factors that influence the care of children with epilepsy. Childhood epilepsy, like many other chronic disorders, causes long-term stress for the entire family. Maladoptive coping by parents is often cited as a major reason for the increased incidence of emotional problems in children with epilepsy. It is generally accepted that health care systems should provide not only treatments of confirmed efficacy but that the provision should take place with the maximum effectiveness and efficiency. In the UK as elsewhere there has been an increasing emphasis in recent years on evaluation and audit. There has been little systematic work in developing comprehensive means of assessing quality of care in epilepsy. Assessments of the process of care in epilepsy should particularly focus on issues of communications and the interpersonal aspects of care. In this respect patient's (in the case of children, parents or carers) satisfaction may be seen as representing one important outcome of care, and it also speaks to the management of the process of care. Previous research suggests that patient’s satisfaction makes a direct contribution to other important outcomes. Thus patients who are less satisfied with care are less likely to comply with treatment regimes and are less likely to re-attend for treatment - both factors that are important in achieving good management and control of epilepsy. In 1993, the Epilepsy Needs Document was produced at the suggestion of the Department of Health by six leading epilepsy specialists. The Epilepsy Task Force set up subsequently, produced service specifications with input from a wide range of clinical, consumer, public health and purchaser representatives. In the evaluation of the local epilepsy services in Bexley, for children with epilepsy, the relevant Task Force recommendations were chosen as criteria for good practice. The standards recommended by the Epilepsy Task Force specific to the topic area covered here are in relation to The Epilepsy Register, Staffing and access to specialists, investigations, treatment and follow-up, provision of information, and with respect to rehabilitation - liaison with primary care, with the school health service, with voluntary services and self help groups and provision of counselling and support. In the evaluation of the organisation and provision of services against these criteria, special emphasis was placed on parental perceptions as a key measure. A semi-structured interview protocol was used to elicit information from parents. The key findings in the study were as follows. There is no register of those suffering from epilepsy in Primary Care Services, in Community Child Health Services, nor in the Hospital Paediatric Services. With the help of this study the compilation of a Register has already begun in Bexley. Eighty eight children with epilepsy between the ages 0-11 were identified. This is only about 63% of the number expected even on a conservative estimate of 4.1/1000 of prevalence. This highlights the problem in relation to the absence of a register. Also of the eighty eight children, it was possible to obtain consent from parents of only 47. There is a possibility of a degree of selection bias in this study because of the under reporting of cases and because of those identified a high proportion (38%) came from the special needs module. With respect to responder bias of the 88 children identified, despite repeated efforts, consent for interview was obtained from the parents of only 53% of our sample. A comparison of the basic demographic data of responders and non responders reveals that a high proportion of non responders came from the socially disadvantaged areas of the Borough. This may in fact be the group that requires more of the service input. Despite the level of bias in this study, general conclusions could be made and underpinned with evidence from the relevant literature review a number of key recommendations in line with Task Force guidelines can be made for further consideration. Although almost all the children have had access to a specialist, it was found that there is no Paediatrician with a special interest in epilepsy, there is no specialist epilepsy clinic, or the services of an Epilepsy Specialist Liaison Nurse. There were major deficiencies noted with respect to provision of information to the parents. There were no consistent sources of information, with parents reporting a number of different sources other than the professional dealing with the child reported and some reported that they had not been given any information by clinicians. In rating the adequacy, 74% reported the information to be inadequate. With regard to the timing of receipt of information, nearly 30% reported not receiving any information at the time of the diagnoses, about how fits could be managed at home. With respect to the School Health Service, 90% of the parents felt that the school was aware of the child’s epilepsy and 72% of the parents felt that the school was adequately informed. Only 10% of the parents reported being introduced to the British Epilepsy Association, or a voluntary organisation. 79% felt that it would be useful to have a support group locally and 64% were willing to be involved themselves. There were a number major areas of concern for the parents. The most important one being a worry about the child’s future followed by progress at school, restrictions in activities, medication and side effects. When asked what they thought their child’s main concerns about epilepsy were. They gave worries about school work, feeling unsafe and restricted as major concerns. These areas point to the importance of providing facilities for counselling and support to the families either through local statutory or voluntary agencies.

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