Table 2 Summary table of included Intervention studies
References | Study type/Intervention | Participants | Setting/context | Outcomes | Results | Methods/Quality |
|---|---|---|---|---|---|---|
Shore et al 2008 [32] | Pre and post Intervention study Content: Seizure and Epilepsy Education (SEE) program- 1st day education about epilepsy, seizures, AED & lifestyle management 2nd day- psychosocial, coping skills, education and employment (n = 17 families) Duration: 2 consecutive weekends days 8 hours per day Delivered by: Robert Mittan who designed the original SEE program for adults | Young people aged 13-18 years old 11 young people 7 boys 4 girls 13 families in total completed the whole study Caucasian African-American | Not stated | Follow up data was obtained at Baseline child n = 9 Parent n = 16 1 month child n = 8 parent n = 14 6 months child n = 9 parent n = 16 | 1. Parent's demonstrated improved knowledge at 1-month and 6-months (adjusted p values = 0.001 and <0.001, respectively 2. Parent's less emotional impact at 6-months (adjusted p value = 0.033) No significant change to young people knowledge about epilepsy (0.05 p level significance adopted) Internal consistency Cronbach's α ranging from 0.74 to 0.97 | Met all criteria however: Parent data strong Young person data weak Intervention not appropriate to the developmental and educational level of the young person 5 families dropped out No follow-up data for 3 young people 1 parent did not complete 1-month follow up |
Vona et al 2009 [33] | Pre and post Intervention study Content: To read a Brochure (English n = 20 and Spanish n = 20) with 6 subsections relating to co morbidities associated with epilepsy N = 40 Duration: Time it took to read complete questionnaires and read Brochure Delivered by: Authors of study | 20 Hispanic mothers 20 Caucasian mothers | Clinic waiting room | Post intervention questionnaire was compared to the pre intervention questionnaire | 1. Mothers demonstrated significantly increased knowledge about co morbidities (F(1.38 = 10.84, p < 0.002) 2. greater knowledge about effective mental health care (F(1.36) = 3.80, p < 0.06) no significant effect in between mother groups (0.05 p level significance adopted) | Questionnaires and Brochure not previously validated Due to recruitment strategy no data on non responders No demographic data on participants |
Buelow 2007 [34] | Feasibility Study Content: Day 1- Introduction and giving information about epilepsy Day 2 & 3- learning advocacy skills Day 4- teaching parents how to influence policy n = 4 Duration: 4 days Delivered by: The author and one parent expert | 4 mothers | Not stated | Open-ended questions to the group at the end of each day, the response data collected and qualitatively analysed | Lifestyle changes-mothers gained knowledge and skills on how they can take control and plan their child's transition and dealing with health, social care and education Thematic analyses | Recruitment strategy weak Intervention validated by conducting a pilot study and focus group with experts |
Jantzen et al 2009 [30] | Pre and post Intervention study 2 day course (14 hour per course) or 2.5 days (16 hour per course) Questionnaires: Parents-Epilepsy Knowledge Profile (EKP-G) 55 true/false items (34 medical knowledge and 21 social knowledge) Children's-modified EKP 27 true/false items medical and social Parent and child questionnaire on knowledge-Internal consistency coefficient of the scale was α = 0.58 in the study sample | 44 young people aged 12-16 years old 72 parents (21 children) control group 31 children, 39 young people and 72 parents | Not stated | Pre intervention questionnaire and 6 months post intervention questionnaire Waiting time control group 6 months prior intervention and just before the intervention | Young people increased medical knowledge (MK) and seizure triggers (ST) post intervention Mean (SD) MK: Baseline 19.52 (4.42) Post 24.91 (3.57) ST: Baseline 8.18 (2.46) Post 9.50 (2.47) Parents increased knowledge on medical and social aspects of epilepsy MK: Baseline 27.54 (3.72) Post 29.83 (2.51) ST: Baseline 12.28 (2.41) Post 14.97 (2.16) | Control group matched Follow up assessment Well researched prior to setting intervention Piloted by children, young people and parents to validate intervention |
Snead et al 2004 [31] | Pre and post Intervention study One hour a week for six weeks, didactic session then follow a group discussion and use of audio visual media and handouts | 1st group total 7 3 boys 4 girls | Neurology department | Pre and post intervention Questionnaire delivered just before intervention and 6 weeks later | Positive trend towards improvement in quality of life Statistical analyses conducted using a paired t test and a nonparametric χ2 test. | Researchers trained in neuropsychology And working with young people Intervention was piloted and amended following feedback from participants to increase validity and reliability |