School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada; Cardiovascular Research Methods Centre, University of Ottawa Heart Institute, Ottawa, Canada.
Independent Researcher, Ottawa, Canada.
Epilepsy Behav. 2020 Oct;111:107120. doi: 10.1016/j.yebeh.2020.107120. Epub 2020 Jun 20.
The use of medical cannabis to treat drug-resistant epilepsy in children is increasing; however, there has been limited study of the experiences of parents with the current system of accessing medical cannabis for their children.
In this qualitative study, we used a patient-centered access to care framework to explore the barriers faced by parents of children with drug-resistant epilepsy when trying to access medical cannabis in Canada. We conducted semistructured interviews with 19 parents to elicit their experiences with medical cannabis. We analyzed the data according to five dimensions of access, namely approachability, acceptability, availability, affordability, and appropriateness.
Parents sought medical cannabis as a treatment because of a perceived unmet need stemming from the failure of antiepileptic drugs to control their children's seizures. Medical cannabis was viewed as an acceptable treatment, especially compared with adding additional antiepileptic drugs. After learning about medical cannabis from the media, friends and family, or other parents, participants sought authorization for medical use. However, most encountered resistance from their child's neurologist to discuss and/or authorize medical cannabis, and many parents experienced difficulty in obtaining authorization from a member of the child's existing care team, leading them to seek authorization from a cannabis clinic. Participants described spending up to $2000 per month on medical cannabis, and most were frustrated that it was not eligible for reimbursement through public or private insurance programs.
Parents pursue medical cannabis as a treatment for their children's drug-resistant epilepsy because of a perceived unmet need. However, parents encounter barriers in accessing medical cannabis in Canada, and strategies are needed to ensure that children using medical cannabis receive proper care from healthcare professionals with training in epilepsy care, antiepileptic drugs, and medical cannabis.
医用大麻治疗儿童耐药性癫痫的应用正在增加；然而，对于父母在为孩子获取医用大麻方面所面临的困难，目前仅有有限的研究。
在这项定性研究中，我们使用以患者为中心的获取医疗服务框架，来探索加拿大的父母在为孩子获取医用大麻时所面临的障碍。我们对 19 名父母进行了半结构式访谈，以了解他们在获取医用大麻方面的经验。我们根据可及性、可接受性、可获得性、可负担性和适宜性这五个方面对数据进行了分析。
父母寻求医用大麻作为一种治疗方法，是因为抗癫痫药物未能控制孩子的癫痫发作，导致他们感到未满足的需求。医用大麻被视为一种可接受的治疗方法，尤其是与增加其他抗癫痫药物相比。在从媒体、朋友和家人或其他父母那里了解到医用大麻后，参与者寻求授权将其用于医疗目的。然而，大多数人遇到了孩子的神经科医生的阻力，无法讨论和/或授权使用医用大麻，许多父母在从孩子现有的护理团队成员那里获得授权方面遇到困难，导致他们寻求从大麻诊所获得授权。参与者表示每月在医用大麻上的花费高达 2000 加元，大多数人感到沮丧的是，它没有资格通过公共或私人保险计划报销。
父母寻求医用大麻作为治疗孩子耐药性癫痫的方法，是因为他们认为存在未满足的需求。然而，父母在加拿大获取医用大麻时遇到了障碍，需要采取策略来确保使用医用大麻的儿童能得到接受过癫痫护理、抗癫痫药物和医用大麻培训的医疗保健专业人员的适当护理。
