The experience of living with adult-onset epilepsy

Abstract

The incidence and prevalence of adults diagnosed with epilepsy is higher compared to those diagnosed in childhood, yet the experience of living with adult-onset epilepsy has rarely been examined. Hence, the current study took a phenomenological approach to examining the experience of living with epilepsy following diagnosis in adulthood. Semi-structured interviews were conducted with 39 people from across the UK, diagnosed with epilepsy between the ages of eighteen and sixty, at two points in time, six months apart. Phenomenological analysis identified three central themes: the unpredictability of seizure occurrence; the ripple effect; and re-evaluating the future. Despite the accepted consensus in the epilepsy literature that living and coping with epilepsy becomes more difficult the older a person is diagnosed, the current findings indicated that this is inadequate. Rather, it is more suitable to consider that those living with adult-onset epilepsy have a specific experience of the condition and particular support needs, given that they once lived their lives as people without epilepsy.

Validation of the integrative model of adjustment to chronic conditions: Applicability to adult-onset epilepsy

“…Furthermore, a series of positive actions, such as adapting health behaviours and readjusting life and work goals, were evident, as well as more avoidant strategies of viewing the seizure as an isolated event. Kılınç et al's (2017) study of the experiences of people living with AOE found similar themes. The first theme identified was the unpredictability of seizures where concern about a potential seizure was present even in people who had been seizure-free for years.…”

Men with adult-onset epilepsy: Their experiences of health care provider relationship qualities following neurosurgery

“…A smaller number of people experience epilepsy for the first time in adulthood. When individuals first experience seizures at age 18 or older, this is classified as adult-onset epileptic seizure (AOES) activity (Bromfield, Cavazos, & Sirven, 2006;Crepeau & Sirven, 2017;Kilinç, van Wersch, Campbell, & Guy, 2017;Ramanathan et al, 2014). When AOES first appear in adulthood, the cause can be the result of damage that happened in the first few years of life due to an infectious disease (Leung, Hon, & Leung, 2018; National Institute of Neurological Disorders and Stroke [NINDS], 2020).…”

Leading up to saying "yes": A qualitative study on the experience of patients with refractory epilepsy regarding presurgical investigation for resective surgery

“…Currently, the literature on refractory epilepsy is limited. We know little of patients' perspectives in terms of their views of treatment and care options over the longer term as assessments progress, with studies concentrating on quantitative assessment to examine incidents of treatment and psychosocial impact of the disease [28,29]. Furthermore, few studies have captured the fluidity of changing perceptions and decisions during assessment and over time.…”

“…Furthermore, few studies have captured the fluidity of changing perceptions and decisions during assessment and over time. In order to better understand these aspects, and the build-up to surgery, as a progressive and highly contextualized process, and to adequately clarify the meaning and significance of resective surgery for patients, a qualitative approach was necessary [28][29][30].…”

“…This qualitative study aimed to reveal the experiences of adult patients with refractory epilepsy leading up to and during presurgical assessment and investigation stage and to examine how patients' perceptions of resective surgery are shaped. Qualitative inquiry can offer a much needed, in-depth view of this complex topic [28,29] and help fill the gap in our knowledge base regarding the experiences of being assessed for surgery in Australian adult patients with refractory epilepsy.…”