The experiences of medically fragile adolescents who require respiratory assistance

Aims: To report a study of the experiences of medically fragile adolescents who require respiratory assistance.

Background: The population of medically fragile adolescents has grown in recent decades because of the sequelae of prematurity, injuries and chronic or terminal illnesses. Medically fragile adolescents who require respiratory assistance are part of this unique population, yet as nurses, we know little about their experiences and the best approaches to use in caring for them.

Design: A qualitative design, interpretive phenomenology was used in this study.

Methods: Interpretive phenomenology was used to describe and interpret the experience of 11 medically fragile adolescents (ages 13-18 years old) who required respiratory assistances of tracheostomies, ventilator support and Bi-level positive airway pressure. Between April 2010-September 2010, audiotaped semi-structured interviews were conducted with the adolescents. Data analysis was completed using a stepped approach to identify themes.

Findings: Five themes were identified from the interviews with the adolescents: 'Get to know me', 'Allow me to be myself', 'Being there for me', 'No matter what, technology helps' and 'I am an independent person'.

Conclusions: Medically fragile adolescents have a clear view of who they are as a person. They want nurses to view them as a person, not just a patient. The adolescents said that friends were there for them when they needed support. Technology had meanings that enhanced daily living and existed as a part of their day, not their whole day. The adolescents were actively engaging in activities and strategies to achieve their goals of independence.