This project will demonstrate that intensive age-specific educational intervention programs will significantly improve the coping abilities and physical health of patients with cystic fibrosis (CF). The educational interventions will be used on four age groups: newly diagnosed infants, pre-adolescents, adolescents and young adults. Parents will be trained to cope with the special psychological needs of the child with CF with individual cognitive behavioral training soon after diagnosis and by computer assisted instruction problem solving training. Adolescent cystic fibrosis patients will be given an intensive program of self-care training to learn to be less dependent on others for their medical needs, to help in their struggles for independence and to increase their compliance with therapy. Young adults with CF will be shown how to live independently while coping with their disease through a comprehensive training program emphasizing development of personal, psychological and social skills. Participants in this program will demonstrate improved physical health, psychological and social function and will show progress at all ages towards living independently and towards normal social relationships. A home monitoring program will follow the day-to-day physical and psychosocial progress of these patients while an extensive medical and demographic database will reveal short and long term benefits. Special attention will be given to physical and immunological changes as demonstrating quantifiable organic changes associated with the psychological and social behavioral changes. The project will also demonstrate how the children will make the transition into new stages in their lives with the knowledge and coping abilities they gain. The interventions used in this project will be integrated to cover an entire CF patient population into a package of tools and techniques that will be transferable to all CF Centers and which will serve as a model for other chronic diseases which affect children and their families.
| Patterson, J M; Budd, J; Goetz, D et al. (1993) Family correlates of a 10-year pulmonary health trend in cystic fibrosis. Pediatrics 91:383-9 |
| Budd, J R; Warwick, W J; Wielinski, C L et al. (1988) A medical information relational database system (MIRDS). Comput Biomed Res 21:419-33 |
