ChILD Family Education

Abstract

The Children's Interstitial Lung Disease (chILD) Foundation and chILD Research Cooperative identified a need for accurate and understandable chILD-related information for families. As a result, collaboration with the University of Alabama at Birmingham (UAB) Pediatric Pulmonary Center (PPC) produced "Get Up And Go With chILD!," a comprehensive, chILD-specific family education resource. Families and clinicians from multiple backgrounds and perspectives submitted content suggestions and copies of currently used family education and health management materials. Families provided information about the helpful and unhelpful information they had received in the past, the information they wished they had received, and their educational preferences. The resultant booklet is comprehensive, containing the education topics identified as critical for inclusion by families and clinicians, and is written at a seventh grade reading level. Available both in print and online, the online version contains live links to interactive Web sites, support groups, teaching videos, and downloadable forms and tools. If health education is to be understandable, useable, efficient, cost-effective, and of superior quality, if it is to improve people's lives by facilitating a change in their attitudes, beliefs, knowledge, skill levels, and behavior, an interdisciplinary, family-centered approach is crucial. This is resource intensive, but the initial costs of producing materials in this manner far outweigh the potential costs of poorly developed and delivered health education. Through an iterative, well-coordinated, collaborative process between families and clinicians from a variety of backgrounds and perspectives, "Get Up And Go With chILD!" exemplified this approach.

Infants and Young Children with Children's Interstitial Lung Disease

“…The American Thoracic Society (ATS) has also recently produced an excellent free handout entitled American Thoracic Society Patient Information Series: What is ILD in children 49 ? Further information on the development of educational material through the collaboration of the chILD Foundation and chILD physicians can be found in the manuscript by McDougal et al 50 The CHILDRN is a multidisciplinary international group of physicians committed to improve the care and create research to provide cures for infants and young children with these disorders. CHILDRN, in partnership with the chILD Foundation and the Children's Hospital in Denver, will soon launch an international registry/database to capture natural history, clinical features, response to therapies, and outcome data on these children.…”

Patient education for individuals with Interstitial Lung Disease: A scoping review.

“…Quality education in health seeks to enhance the lives of individuals through the encouragement of improvement in attitudes, values, awareness, skills, and behaviour. 22 Oxygen therapy, exacerbation control, energy conservation, symptom management, mood disorders, medications, lung transplants, and end-of-life care are all topics covered in educational programs for ILD patients. 23 PE can be broken down into five distinct phases.…”

Expanding Our Understanding of Children's Interstitial Lung Disease

“…6 Another key article is provided by McDougal and Gettys describing the importance of education and the collaboration between family foundations and physicians. 7 The entire chILD series should provide major benefi t to both physician and patient communities in their search for accurate information.…”