Ventilator dependent young people had unnecessarily prolonged time in hospital resulting in educational and social exclusion
QUESTION: What are young peoples' views and experiences of their health and social care when they are dependent on a ventilator?
18 participants aged 6–18 years (56% boys) who were ventilator dependent. 9 participants had spinal injury, and 9 had a congenital diagnosis.
Face to face focused interviews were done with the 18 participants where they lived and with the family members of 15 participants. Because some participants had communication impairments, alternative methods (eg, draw or play), caregiver help, and interpreters were used when needed. Interviews were reflexive and explored participants' health, social, environmental, and educational needs, and their future aspirations. The researcher took or obtained photographs and other materials, and kept a field diary. Interviews were taped, transcribed, and analysed for thematic content. A graphic artist was used to illustrate common experiences in cartoon format; these cartoons were verified for accuracy. A patient centred needs assessment framework was …