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.
The findings indicated a need to promote epilepsy awareness programmes as a means of increasing public knowledge of epilepsy, with the aim of reducing felt stigma.
Adapting to life with adult-onset epilepsy is a challenge and there is a need for better interventions to support people, who have difficulty with psychosocial adjustment to the condition. The integrative model of adjustment to chronic conditions was developed for type 2 diabetes. This study aimed to demonstrate the applicability of the model to adult-onset epilepsy and thus make an original contribution to the development of relevant interventions. Qualitative data from a previous phenomenological study on the experience of adult-onset epilepsy were mapped onto the integrative model of adjustment to chronic conditions using framework analysis. Ten of the original 39 datasets were selected. All 10 datasets were from females diagnosed with epilepsy within 5 years before participation in the original study. The results demonstrated applicability of the integrative model of adjustment to chronic conditions after minor revisions to the model. These findings support further development of the integrative model of adjustment to chronic conditions for use as a clinical intervention for people with adult-onset epilepsy.
Living with a chronic condition can challenge a person's identity, yet there is a paucity of research exploring this experience for people with epilepsy and particularly for those diagnosed in adulthood. Consequently, through an interpretative phenomenological approach, the current study aimed to explore what the experience of adult-onset epilepsy meant for a person's identity. 39 people with adult-onset epilepsy from across the UK, took part in up to two semi-structured interviews. A modified form of interpretative phenomenological analysis was conducted and identified three themes: 1) disarming the impact of seizures considered strategies used to control seizure occurrence and regain a sense of control over the body; 2) distinguishing the self from the body highlighted participants' attempts to separate their sense of self from the unpredictability of their bodies; 3) separating epilepsy from themselves demonstrated how participants externalized epilepsy from themselves in order to reject it as part of their identity. The findings highlighted that living with adult-onset epilepsy can challenge a person's sense of self and trust in their body, resulting in the adoption of various strategies to manage the threat to their identity. As such, practitioners must pay attention to the impact that adult-onset epilepsy can have on a person's identity and faith in their body.
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