Enabling young 'ventilator-dependent' people to express their views and experiences of their care in hospital

Abstract

Discussion in this paper is drawn from a phenomenological study carried out in England describing the views and experiences of young 'ventilator-dependent' people aged 6-18 years, regarding their health and social care, education, and aspirations for the future. This study presented many methodological and ethical challenges in order to elicit and present their views in a meaningful way. Data were elicited through focused face-to-face interviews with 18 young people. Innovative methods of data collection were used with younger children and those who had a range of communication impairments. In addition, family members of 15 young people were interviewed. Presentation of findings is limited to views and experiences of the young people's care in hospitals. Findings reveal that a significant number of Articles in the United Nations (UN) Convention on the Rights of the Child were not respected or upheld. Young 'ventilator-dependent' people were discriminated against when trying to access health services because of their need for assisted ventilation. They were particularly excluded from making important decisions about their lives and were not always offered the full protection of the Children Act 1989 (England). Some young people were not able to maintain adequate contact with their families, first language, culture, nationality and religion. Almost all spent prolonged periods of time (in some cases years) in hospital when they no longer wanted or needed to be there. All those interviewed wanted to be discharged home far sooner. The generalizability of findings is unknown; however, important questions are posed in relation to nursing practice and research regarding the overall management of this group of young people. Issues include: respecting and upholding human rights; and challenging the boundaries of current nursing practice in order to move towards child-centred, appropriate and effective models of care.