Abstracts

Rationale: In the United States (US), those aged 60 years and older are widely affected by epilepsy. Thus, yearly, thousands of older adults begin self-managing this complex condition. Despite the high incidence of epilepsy in older adults and knowledge that epilepsy self-management (ESM) affects important outcomes, researchers have not investigated the ESM experiences of older adults. While knowledge of the ESM experiences of younger adults exists, this research may not be applicable to older adults with epilepsy given the uniqueness of this population in terms of co-morbidities, physiologic changes, and polypharmacy. Understanding the impact of epilepsy on the lives of older adults, as well as the challenges they face in managing the disease, is necessary to develop effective interventions to improve ESM for this population. Thus, the purpose of this pilot study was to describe the ESM experiences of older adults diagnosed with the disease at age 60 or older. Methods: A qualitative descriptive design was employed. Five older adults (mean age 68 years; mean time since diagnosis 3.5 years) were interviewed to generate the data set. Interview questions were intended to elicit respondents experiences with ESM, including how their lives have changed since epilepsy diagnosis, challenges encountered in managing the disease, management strategies used, and the overall effect of the disease on daily functioning. Data were analyzed via content analysis techniques. Reoccurring themes were identified. Results: Three main themes, Perceived Life Changes since Diagnosis, Challenges, and Types of ESM Strategies (See Table and Figure 1), comprised of sub-themes, emerged. Respondents reported marked and mostly undesirable changes in their lives since being diagnosed, including lifestyle changes, changes in perceived well-being, and physical and emotional changes in the form of unpleasant symptoms. Respondents also reported challenges associated with managing epilepsy, including difficulties in receiving a correct diagnosis, receiving inadequate education at the time of diagnosis and feeling unprepared for the seriousness of the disease, problems maintaining pre-diagnosis levels of independence, and difficulties involving medications. The use of two types of ESM strategies those aimed at managing the disease itself and those aimed at managing the life changes and challenges associated with having epilepsy were reported. Further, strategies can be categorized as proactive or reactive. Conclusions: The present findings reveal that adults diagnosed with epilepsy late in life have some ESM experiences/needs and are at risk for certain undesirable life changes and management challenges that are not found in the younger adult ESM literature. General ESM interventions based on younger adult research may not be as effective in older adults, and thus must be tailored to meet their unique needs. To inform the development of such interventions, more explanatory and interpretive qualitative research with this population is needed, and the results of this study can be used to guide and inform the design and research questions of future larger-scale studies.