PILOT--Computer /family management /type 1 diabetes

Yale University, New Haven CT

Investigators

Linked publications & trials

Abstract

Description: (from applicant's Abstract) Type 1 diabetes is the most common metabolic disorder of childhood, affecting 135,000 children and adolescents in the United States with an annual incidence of 18 new cases for every 100,000 people under the age of 20. Although children with type 1 diabetes are considered to be at risk for maladjustment children with type 1 diabetes are considered to be at risk for maladjustment problems there is strong evidence that the family plays a critical role in the child's adaptation. The management IDD presents families with multiple challenges. Parents are expected to learn new, sophisticated medical information and master a complex treatment regimen. Adding to the complexity of these challenges is the fact that most families strive to implement the treatment regimen in a way that supports child development, family functioning, and quality of life for individual family members. Telehealth systems (TS), which link patients to providers on a 24 hour basis, have the potential to support family management to complex treatment regimens such as the one recommended for children with diabetes. The aim of this pilot study is to: (1) understand how families incorporate a TS into the management a TS into the management of a child's diabetes and (2) demonstrate the feasibility and further develop the design for a larger prospective study testing the effectiveness of a TS intervention to support family management of type 1 diabetes in children, using a collective case study approach, the pilot study will collect data from 7-10 purposively selected families who will be followed for four months. Data collection will include direct observation and intensive interviewing of multiple family members as well as completion of structure measures. In order to situate the family's use of the TS in the broader context of their overall family life, data will be collected on a wide range of topics, including the family's subjective illness experience and use of the TS, child and family adaptation, regimen adherence and disease control, illness knowledge, health care utilization and costs, and quality of life. In addition to contributing to the theoretical basis for understanding family and individual family member response to illness, the study will provide critical insights into the appropriate use of telehealth in health care delivery.