The information needs of parents of children with early-onset epilepsy: A systematic review.

OBJECTIVE

Early-onset epilepsy has broad physical and psychosocial impacts, and parents have a wide variety of information needs. This systematic review set out to assess 1) whether parents of children with early-onset epilepsy have unmet information needs and 2) their preferences regarding information content and style of information delivery.

METHODS

We searched Medline, Embase, PsychInfo, and CINAHL using keywords relating to information needs, information resources, and preferences for information delivery. We limited the search to parent populations and included all peer-reviewed publications published in English after the year 2005.

RESULTS

Eleven studies met our inclusion criteria. Parents reported a clear need for understandable, realistic, and focused information, highlighting a particular need for content about comorbidities and emotional support. Parents reported limited availability of detailed information resources on early-onset epilepsy, which compromised their ability to access appropriate healthcare services. Unmet information needs were associated with greater levels of stress, poorer psychosocial outcomes, and lower satisfaction with healthcare services.

SIGNIFICANCE

The results highlight the importance of detailed epilepsy information for families. Healthcare professionals should be aware of the impact of a lack of epilepsy information on family wellbeing. Multipronged and tailored interventions targeting the information needs of families are warranted.