Parents of children who have both epilepsy and significant learning problems (SLP) have a high rate of stress and need assistance to manage their child's complex medical and mental health problems. Our preliminary research has shown that sources of stress include the need for information, and lack of partnerships with school personnel and health care providers. We propose that through the cognitive behavioral intervention, """"""""Creating Avenues for Parent Partnership, (CAPP)"""""""" parents will develop the knowledge, skills and self-efficacy to :(a) build partnerships with health care providers and school personnel, (b) be better able to effectively manage their children's health care and school needs, and (c) report less stress associated with their child's condition.. The major goal of this of this proposal is to pilot test the CAPP intervention in parents of children who have both epilepsy and SLP. The CAPP intervention consists of a one-day cognitive behavior program and three follow-up sessions. The primary sample will be 50 primary care giving parents whose children have both epilepsy and SLP. Parents will be recruited through a partnership with the Epilepsy Foundation of Greater Chicago. We will use an experimental design randomly placing 25 parents in the intervention group or 25 parents in a wait-list control group. Variables measured include stressors (child seizure condition), existing resources (SES, social support), perception of the problem, stressor pile up (knowledge, skills and self-efficacy) and adaptation (distress, family quality of life, and family need). Data will be analyzed using an ANCOVA model, with the change from baseline to post-booster groups as the outcome, and treatment group (intervention or wait-list) as the explanatory variable. To our knowledge no previous intervention studies have been developed for parents of children with epilepsy and SLP. Findings from this study will provide essential information to build a more extensive trial. Public Health Statement Creating Avenues for Parent Partnership (CAPP) is a health promotion intervention that is designed to give parents the skills to seek appropriate medical care and education opportunities for their children with epilepsy and low IQ. This will be accomplished through heath education and work with expert parents who have learned to traverse the health care system. With the appropriate help, these children can learn to be productive members of society. ? ? ?
| Buelow, Janice M; Johnson, Cynthia S; Perkins, Susan M et al. (2013) Creating Avenues for Parent Partnership (CAPP): an intervention for parents of children with epilepsy and learning problems. Epilepsy Behav 27:64-9 |
| Miller, Wendy; Buelow, Janice M (2011) Psychometric testing of self-efficacy for partnership scale: an example of instrument development. Clin Nurse Spec 25:11-4 |
