How2tell: The conditions of disclosing for people with epilepsy

Background Epilepsy is experienced by approximately 41,000 people in Ireland. Twenty-nine percent of people with epilepsy (PWE) do not feel comfortable telling friends and family members that they have it, and 56% are not... [ view full abstract ]

Background
Epilepsy is experienced by approximately 41,000 people in Ireland. Twenty-nine percent of people with epilepsy (PWE) do not feel comfortable telling friends and family members that they have it, and 56% are not comfortable telling their employer and work colleagues. The importance of self-care management of chronic conditions is recognised increasingly within research programmes. However, there is little evidence of PWE-informed educational resources for self-care management.

Aim and objectives
To understand the psychosocial aspects of how adult PWEs self-disclose information about their condition to others.

Method
The research design involves the collaborative approach where two PWE participate in the steering group committee. Ethical approval was granted by the university. A sample of 35 consenting PWEs aged over 18, with experience of disclosure, were recruited. Participants were interviewed using grounded theory approach; in-depth interviews explored PWE’s first-hand experiences of self-disclosure (or not) in different social situations such as telling an employer, college, partner, friends, work colleagues and flatmates.

Findings
A major finding from this study is that before a PWE is ready to think about disclosing, they have accepted their diagnosis. After the diagnosis was made, participants often reported feeling relief in knowing. However this was followed by a range of feelings including confusion, a desire to fit in, distress, anger, shame and denial. In order to reach acceptance and a readiness to disclose, participants recommended certain actions including: not making a big deal, seeking support, rehearsing how to tell and becoming knowledgeable about “my” epilepsy.

Conclusions and implications
Before PWEs decide to disclose they satisfy certain conditions of disclosing. These will inform the development of How2tell multi-media educational resources, including an APP, on self-disclosure for practical use in everyday social/life situations.

Funding: The How2tell study is funded by Epilepsy Ireland/HRB (Grant No. MRCG/2013/6)