Abstracts

Rationale: Epilepsy affects approximately 1% of the population and 30% will have intractable epilepsy. The disorder significantly impacts children and their families. Focus is often on medical treatment rather than other daily challenges. Previous research has demonstrated that the creation of images has been shown to humanize, give voice and empower the people and communities pictured. Portraits are capable of powerfully shaping the lives of those creating and those individuals depicted in the images in innumerable and tangible ways. This innovative project combined portraiture and transcribed dialogue to explore the lived experience of children and families living with epilepsy. Methods: Following REB approval, the researchers recruited 6 patients aged 5-25 years with epilepsy. Five of the 6 children have intractable epilepsy with multiple seizure types. Phenomenology is a qualitative research methodology that provides a way of exploring and gaining an in depth understanding of life experiences. The following data were used for the analysis: ink, charcoal and pastel paintings; the artist field note journal and transcribed dialogue between the artist and the families during the portraiture process; and trancribed semi-structured interviews. The portraits were reviewed and the narratives read and re-read. A two step coding process was used to identify themes and link them with relevant participant quotes to capture the experiences of the patients and their families. Results: Multiple themes were identified from the qualitative data. The shock and stress of the initial seizures: the fact seizures come out of the blue makes them frightening and stressful. Families describe a fear their child is dying. The impact of the diagnosis on family members: the stress of the seizures impacts parents and siblings, changing their way of life. The uncertainty and unpredictability of when seizures might occur impacts their choice of activities. Anxiety and fear about the seizures: this includes when they might occur, how long they might last and what they might look like. Seizures can also result in injury, further raising anxiety. The resilience of the children: the children often bounce back from seizures while caregivers might still be struggling with what happened. The importance of support for families: they identified the importance of having people around who understand what families are dealing with and who are willing to listen. The importance of children being accepted: epilepsy is associated with stigma and fear. Findings ways to educate about epilepsy to reduce stigma and fear is important to families. The contribution of children with developmental disabilities: many children with intractable epilepsy have associated developmental difficulties. They have the capacity to motivate people in different ways, and enable kindness and compassion. Conclusions: These data provide a deeper understanding of the experiences and needs of families living with epilepsy and their anxiety about the future. The data are being used for education about epilepsy, and to advocate on behalf of children with epilepsy. The images provide a face for children with epilepsy and the impact on all those who live with the disorder. They create a powerful visual narrative that generates discussion that is not possible with words alone and helped the families feel less alone. Funding: The project was supportive by the Dr GW Archibald Gold Headed Cane Fund in the Humanities at Dalhousie University. This paid the artist who is also a qualitative researcher and provided funds for supplies and framing of the artwork.