A qualitative exploration of the experience of living with epilepsy in the mid-west region of Ireland.

A qualitative exploration of the experience of living with epilepsy in the Mid-West region of Ireland The problem: Epilepsy is a chronic condition with associated biological and psychosocial effects. While all chronic conditions affect quality of life, epilepsy is unique because of the stigma and psychosocial burden associated with it. The aim of our study was to evaluate the emotional and psychosocial impacts of living with epilepsy, as well as the role of culture and society which can affect an individual’s experience and their approach to treatment. The approach: This study adopted a prospective, qualitative design using Interpretative Phenomenological Analysis (IPA) methodology. A purposive sample of 12 people with epilepsy was recruited from the registers of General Practices in the Mid-West region of Ireland. Semi-structured face-to-face interviews were conducted to talk about, and explore, the personal meaning of living with epilepsy. Audio recordings were transcribed verbatim. Themes that emerged as representative of the content were then identified. A total of 12 participants took part in this study. Nine were female with a mean age of 35 years. Findings: Fear, of seizures, of rejection, of embarrassment and of stigma was a recurring issue, presenting in all patient interviews. These perceptions had a direct negative effect on mental health. This connection has not previously been described in an Irish population. There was an overlap between feelings of fear and perceived stigma, issues affecting compliance with medication, and perceptions regarding side effects and prescribing choices. There was also a relationship between feelings of stigma, the perceived need for secrecy and concealment felt by some of the interviewed patients, and feelings of discrimination, both socially and in a work life context. Many of the patients experienced feelings of guilt in a social context, and a perception of being a “burden” to their families. Many also stated that epilepsy affected them in forming relationships. There was a general sense of limited independence, compounded by driving restrictions and a sense of frustration with perceived and real barriers to achieving academic and professional goals. Consequences: Our study provides several insights into the emotional and psychological aspects of living with epilepsy. This study is the first to evaluate the above factors in an Irish population. One of our aims was to examine these intangible aspects of epilepsy with a view to informing an update of currently existing ICGP guidelines. This study was supported by an educational grant from the ICGP Research and Educational Foundation.

Credits

• Jennifer Mullen
• Ray O'Connor
• Breda Carroll
• Gerard Garrett
• Sinead Gavin
• Grainne McNally
• James Moloney
• Toireas Moriarty
• Ciara O'sullivan
• Ciara O'Riordan