PARENTAL PERCEPTIONS IN PHYSICAL FUNCTIONING, ROLE/SOCIAL, AND GENERAL HEALTH IN CHILDREN WITH CONGENITAL HEART DISEASE.

Abstract

Background Studies show that children with chronic conditions benefit from activity camps, specifically in areas of self-esteem, body image, and physical condition. Objectives To assess the parental perception of physical/behavior/health in children with acquired or congenital heart disease (CHD) following a 4-day medically supervised activity camp. Methods This study included 22 children who attended activity camp. Anonymous questionnaires were given to primary caregivers pre and post camp using the mail out/mail back method. The Child Health Questionnaire-Parent/Guardian version (CHQ-PF50) was used to measure three major areas: physical functioning, role/social, and general health perceptions. Analysis was done with nonparametric tests. Results The study group had 11 girls and 11 boys, with a mean age of 11.4 ± 2.2 years. Caucasian, 12; Hispanic. 4; Asian, 2; and other races, 4. All parents were English speakers. At the initiation of camp, the whole group showed very low scores in all three major areas and did not show important improvement after camp participation. Pre and post scores were in physical functioning (44.1 vs 41.9; 95% CI for US healthy children: 52.1-53.9-), role/social (42.4 vs 39.3; 95% CI for US healthy children: 50.3-52.1-), and general health (54.6 vs 49.8; 95% CI for US healthy children: 71.3-74.7-). There was 100% complete pre CHQ-PF50 and 38% post. Conclusions This group of children with CHD significantly scored lower than the 95% confident interval for normal US counterparts in all three major areas of interest, with no improvement after camp participation. Low parental perception of important changes can be ascribed to short length of camp activities, low parental motivation, or low interest level based on family dynamics. Additional research with a larger sample is necessary to evaluate the effects of activity camps on children with CHD.