Abstracts

Rationale: Parents of children with intractable epilepsy face significant caregiver burden. The purpose of this project was to assess parents support needs and views on support groups for parents of children with epilepsy, in order to help develop a professionally-lead Parent Support Group (PSG) aimed at improving parent quality of life and reducing caregiver burden. Methods: Parents were recruited by identifying children diagnosed with intractable epilepsy and followed at the Alberta Children s Hospital. Neurology Clinic staff invited parents to participate in one of two focus groups, offering a neutral environment for discussion and facilitated by a third party (hospital consultant Information and Evaluation Unit). Parents were asked to complete an Informed Consent Form, a Demographic Information Form, and specific questions regarding the logistics of a PSG. The pediatric epilepsy team developed a question guide for the focus group, addressing the following: (a) challenges faced by parents and their individual needs; (b) barriers to and benefits of attending a support group; (c) broad support needs beyond a support group. Focus groups were audio-recorded, transcribed, and analyzed by the third party using thematic analysis. Results: Eighteen parents, three of which were couples (i.e., 15 total family participants), attended focus groups. Most participants were married (93.3%) women (83.3%) who were in their 30 s (mean age = 37.8 years), well-educated (mean years of education = 15.5), and employed (66.6%). The majority of their children with epilepsy (mean age = 7.5 years) had developmental delay (93.3%) with daily seizures (46.6%) and an average of 2.5 antiepileptic medications per child. Thirty-three percent of children had surgical intervention for epilepsy. Theme analysis identified three pervasive themes and associated sub-themes: 1. Relationship Difficulties (Intra-family Responsibilities, Marital Concerns, and Social Isolation Issues); 2. Support System Needs (Talking to Others who Understand, Ability to Learn New Information, and Venting about Troubles); and 3. Health Care System Related Issues (Physician-Related Concerns, Service-Related Problems, and a General Lack of Information). Although parents recognized value in attending a PSG, potential barriers included childcare difficulties, the precarious status of their child s health, and difficulty prioritizing their own needs over those of the family. Conclusions: Parents of children with intractable epilepsy identified broad concerns, highlighting relationship issues, complex demands of parenting, and support requirements. Parents reported that their primary concern is their child s health, and a PSG will not meet all of their needs. Addressing health-care system issues was identified as a crucial factor in supporting families. This information will be used towards improving program-based systems and developing a PSG model that accounts for potential barriers to participation identified by parents.