DEVELOPMENT OF EPILEPSY CARE PROGRAM FOR PEDIATRIC PATIENTS FROM STAKEHOLDER PERSPECTIVES
DOI:
https://doi.org/10.69598/tbps.17.1.13-29Keywords:
โรคลมชัก, ช่องว่างการดูแล, โปรแกรมการดูแลโรคลมชัก, ผู้ป่วยเด็ก, เด็กและวัยรุ่นที่มีโรคลมชักAbstract
Epilepsy is a chronic neurological disease that can have physical, psychological, social, and/or intellectual impact on children and their families. Inappropriate epilepsy care could affect epileptic children’s quality of life. The purposes of this research were to determine the gap in epilepsy care from stakeholder perspectives and to develop an epilepsy care program (ECP) for pediatric patients. This qualitative study was conducted in two phases. In phase 1, gaps in epilepsy care were identified by interviewing four groups of stakeholders including pediatric patients, caregivers, service providers and the finance administrator. The interview questions were developed based on gaps in epilepsy care from pertinent literature. During phase 2, focus group interviews of stakeholders including patients, caregivers, service providers and media experts were conducted to discuss the development of an ECP. Study participants included 16 and 9 individuals for phase 1 and 2, respectively. The participants were identified via purposive sampling of stakeholders. Content analysis was conducted to draw conclusions from the study. Results revealed that a major gap in epilepsy care was due to a lack of knowledge about epilepsy care among pediatric patients and caregivers. Experiences of stress and stigma among caregivers were identified as well. The program will consist of three activities: epilepsy care education (ECE), self-help group (SHG) and pharmaceutical care. ECE will be provided through several channels e.g., social media, books, and telephones. SHG aims to share experiences and provide social support among patients, caregivers and multidisciplinary teams. Pharmaceutical care will be used to identify and manage medication related problems. The ECP was comprehensively developed in regard to the problems and needs of the stakeholders. However, further studies to evaluate the effectiveness of the program for pediatric patients with epilepsy and their caregivers is still needed.
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