By Will Boggs MD
NEW YORK – Children and adolescents with epilepsy commonly have feelings of vulnerability, disempowerment, and discrimination related to their illness, researchers from Australia report.
"It is common for children and families to feel overwhelmed by the disease, and we found that the unpredictable nature of the disease, the medication side-effects, and the fact that remission seldom seems permanent as being major contributors to the uncertainty that epilepsy carries," Dr. Deepak Gill from The Children's Hospital at Westmead, Sydney, New South Wales, Australia told Reuters Health by email.
Numerous qualitative studies have investigated how children perceive and cope with epilepsy and its treatment, as well as their concerns and needs, but most have a limited number of patients and are conducted in a single setting.
Dr. Gill and colleagues undertook a systematic review of 43 articles from 21 countries involving at least 951 children to gain a better understanding of children's experience of epilepsy.
Most children (94.0%) had active epilepsy, 2.0% had been seizure-free for six months, and 4.0% were in remission, according to the August 10 Pediatrics online report.
The authors identified six main themes: loss of bodily control; loss of privacy; inescapable inferiority and discrimination; therapeutic burden and futility; navigating healthcare; and recontextualizing to regain normality.
Here's how they described the conceptual links among these themes: "Participants struggled with emotional vulnerability and the medical management of epilepsy; however, they simultaneously felt empowered as they came to accept and control their disease. The declarative nature and humiliating involuntary function associated with seizures heightened their sense of being overtaken during a fit, and their subsequent awareness of their abnormality."
But, they continued, "Empathetic and responsive health care encouraged them to work through these personal impacts and their struggles with therapy. This support from clinicians, alongside the provision of relevant information, gave participants the capacity to manage their disease and distinguish it from their identity."
The authors suggested a host of strategies and actions in the domains of psychosocial support, provision of information, schooling and employment, navigating healthcare, and multidisciplinary care.
Randomized controlled trials have shown how supportive and problem-solving programs can improve treatment adherence, but more studies are needed to investigate the impact of age-appropriate education on epilepsy and seizure management and on interventions to improve patient quality of life, according to the authors.
"Epilepsy is a fearful disease with many uncertainties," Dr. Gill said. "Children and teenagers frequently experience discrimination, and they feel vulnerable and disempowered - family and peer support are essential in combating this; good support networks lessen the burden of epilepsy."
"Teenagers appreciated clinicians (who) provided emotional support by actively addressing social aspects of the disease and were able to discuss topics that could not be discussed at home," he added.
"Health professionals must work with families and schools to ensure that support networks are in place for every child with epilepsy," Dr. Gill concluded. "Epilepsy resources must be available for all families and children to understand their disease and to allow the teenager to take control of their lives with epilepsy."
Dr. Jeffrey B. Titus, pediatric neuropsychologist from The University of Texas at Austin, told Reuters Health by email, "One of the most interesting findings from this qualitative examination of patient responses across multiple studies is how much more empowered individuals with epilepsy report feeling when they are well educated about their condition. This is noteworthy because these individuals report that this empowerment helps them combat the loss of identity that is so common and so devastating in this condition. Specifically, the article highlights that patients were able to separate themselves from the condition when they understood the condition more, allowing them to avoid having the epilepsy define them."
"Based upon the response from patients across multiple studies, it is clear that youth with epilepsy do not always feel that there are enough support systems in place to allow them to effectively manage all aspects of their condition," he said. "Whether the challenges are financial, social, cognitive, or especially emotional, they are often left feeling like they need to navigate their own way to solutions. As mentioned in the study, empathetic care from providers and/or clinic staff who are willing to listen, support, and assist them in finding resources can make all of the difference for patients."
"It is not sufficient to only focus on seizure control in children with epilepsy," Dr. Titus concluded. "To truly improve their quality of life, providers need to consider the total impact of the condition and screen for learning problems, emotional distress, behavioral disturbance, and psychosocial stressors."
"When detected, these concerns should be evaluated further by referring to specialists in these areas," he said. "This can sometimes be done most effectively and efficiently by partnering with a comprehensive epilepsy program that offers a full range of support services for youth with epilepsy. However, building a network of specialists with whom the provider can consult when needed is an important component of providing quality epilepsy care."
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