Florriann Fehr, Nan Stevens, Jane Hailey, Lindsay A Lo, Carly A Pistawka, Caroline A MacCallum
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Caregiver experiences of children living with a diagnosed neurological disability and using medical cannabis.
Medical cannabis (MC) has recently emerged as a potential treatment option for pediatric neurodevelopmental conditions and epilepsy. Medical cannabis within these conditions remains limited in evidence-based literature. Caregiver experience can play a valuable role in providing real-world evidence. Thus, this study sought to conceptualize primary caregivers' experiences using medical cannabis to treat neurological conditions in their children. A qualitative multiple-case study design was used to ascertain caregiver experiences. Twelve primary caregivers were interviewed to identify four themes: lack of support, perception of efficacy, positive impacts on children and caregivers, and contribution to real-world evidence from caregivers. Caregivers reported symptom improvement in their children and improved quality of life for their child and family. However, caregivers identified a lack of support from the healthcare system as a challenge. This study highlights that while medical cannabis shows promise as a potential treatment option, there is a great need for more research and subsequent healthcare provider education. Significant barriers to caregivers acquiring knowledge and healthcare provider support put patients at risk. The healthcare system must develop better educational programs regarding the potential role of MC (such as the benefits and side effects in different patient groups and regulatory framework for prescribing) to support children and their families better.
期刊介绍:
Journal of Child Health Care is a broad ranging, international, professionally-oriented, interdisciplinary and peer reviewed journal. It focuses on issues related to the health and health care of neonates, children, young people and their families, including areas such as illness, disability, complex needs, well-being, quality of life and mental health care in a diverse range of settings. The Journal of Child Health Care publishes original theoretical, empirical and review papers which have application to a wide variety of disciplines.