Knowledge and information needs of young people with epilepsy and their parents: Mixed-method systematic review

Abstract

BackgroundYoung people with neurological impairments such as epilepsy are known to receive less adequate services compared to young people with other long-term conditions. The time (age 13-19 years) around transition to adult services is particularly important in facilitating young people's self-care and ongoing management. There are epilepsy specific, biological and psycho-social factors that act as barriers and enablers to information exchange and nurturing of self-care practices. Review objectives were to identify what is known to be effective in delivering information to young people age 13-19 years with epilepsy and their parents, to describe their experiences of information exchange in healthcare contexts, and to identify factors influencing positive and negative healthcare communication.MethodsThe Evidence for Policy and Practice Information Coordinating Centre systematic mixed-method approach was adapted to locate, appraise, extract and synthesise evidence. We used Ley's cognitive hypothetical model of communication and subsequently developed a theoretical framework explaining information exchange in healthcare contexts.ResultsYoung people and parents believed that healthcare professionals were only interested in medical management. Young people felt that discussions about their epilepsy primarily occurred between professionals and parents. Epilepsy information that young people obtained from parents or from their own efforts increased the risk of epilepsy misconceptions. Accurate epilepsy knowledge aided psychosocial adjustment. There is some evidence that interventions, when delivered in a structured psycho-educational, age appropriate way, increased young people's epilepsy knowledge, with positive trend to improving quality of life. We used mainly qualitative and mixed-method evidence to develop a theoretical framework explaining information exchange in clinical encounters.ConclusionsThere is a paucity of evidence reporting effective interventions, and the most effective ways of delivering information/education in healthcare contexts. No studies indicated if improvement was sustained over time and whether increased knowledge was effective in improving in self-care. Current models of facilitating information exchange and self-care around transition are not working well. There is an urgent need for further studies to develop and evaluate interventions to facilitate successful information exchange, and follow young people over time to see if interventions showing early promise are effective in the medium to long-term.

Mapping the information-coping trajectory of young people with long term illness

“…These findings relate well to the knowledge exchange processes outlined by Lewis et al (2010), identifying the positive and negative influences in the healthcare content, and the inabilities to cope experienced by young people who felt uninformed, versus the increased confidence experienced and improved quality of life when young people become knowledgeable about their condition.…”

“…Problems have been identified in supporting young people with information in healthcare contexts, with claims that health professionals have a "routine" approach to information support not necessarily meeting the needs of teenagers and young adults (Lewis et al, 2010). The period of transition from teenage years to adulthood is "known to be a particularly challenging time for young people generally" (Department of Health, 2006).…”

“…This is supported in the literature where Pifalo et al, (1997) claimed that 52% of the people he studied receiving consumer health information said that it reduced their anxiety regarding their health concern. A key aspect of information acquisition, and the absorption of that information, is critical to the coping process as individuals become more knowledgeable and less uncertain (Lewis et al 2010). The young people take information from their various interactions, and use this in combination with their own experiences.…”

“…Goldsmith and Fitch (1997: 454) present a situational study of communicating social support identifying complexity through potential contradictions or "dilemmas" where for example advice and support may be viewed by the receiver as either "helpful", a positive experience, or "butting in", a negative one. Lewis et al, (2010) present a theoretical framework to explain information exchange in the healthcare context specifically with young people. The model identifies both positive and negative influences of Information and knowledge exchange in clinical contexts during the transition years, aged 13-19.…”

Young people with an acquired brain injury: Development of a pilot program to support their transition to adulthood

“…The importance of clear communication and information provision has also been highlighted within previous studies as key elements in transition service provision (American Academy of Pediatrics et al, 2002;Crowley e al., 2011;Lewis, Noyes, & Mackereth, 2010;Rapley & Davidson, 2010).…”