Background: Children with tracheotomy receive health care from an array of providers within various hospital and community health system sectors. Previous studies have highlighted substandard health information exchange between families and these sectors. The aim of this study was to investigate the perceptions and experiences of parents and providers with regard to health information management, care plan development and coordination for children with tracheotomy, and strategies to improve health information management for these children.
Methods: Individual and group interviews were performed with eight parents and fifteen healthcare (primary and specialty care, nursing, therapist, equipment) providers of children with tracheotomy. The primary tracheotomy-associated diagnoses for the children were neuromuscular impairment (n = 3), airway anomaly (n = 2) and chronic lung disease (n = 3). Two independent reviewers conducted deep reading and line-by-line coding of all transcribed interviews to discover themes associated with the objectives.
Results: Children with tracheotomy in this study had healthcare providers with poorly defined roles and responsibilities who did not actively communicate with one another. Providers were often unsure where to find documentation relating to a child's tracheotomy equipment settings and home nursing orders, and perceived that these situations contributed to medical errors and delayed equipment needs. Parents created a home record that was shared with multiple providers to track the care that their children received but many considered this a burden better suited to providers. Providers benefited from the parent records, but questioned their accuracy regarding critical tracheotomy care plan information such as ventilator settings. Parents and providers endorsed potential improvement in this environment such as a comprehensive internet-based health record that could be shared among parents and providers, and between various clinical sites.
Conclusions: Participants described disorganized tracheotomy care and health information mismanagement that could help guide future investigations into the impact of improved health information systems for children with tracheotomy. Strategies with the potential to improve tracheotomy care delivery could include defined roles and responsibilities for tracheotomy providers, and improved organization and parent support for maintenance of home-based tracheotomy records with web-based software applications, personal health record platforms and health record data authentication techniques.