Jane Noyes1. 1. Centre for Health-Related Research, College of Health and Behavioural Sciences, School of Healthcare Sciences, University of Wales, Bangor, UK. jane.noyes@bangor.ac.uk
Abstract
AIM: This paper reports a qualitative study with ventilator-dependent children and their parents, describing their experiences and meanings concerning the children's health and quality of life. BACKGROUND: Recent medical advances have enabled children to survive premature birth, congenital anomalies, critical illness and accidents with long-term use of mechanical ventilation to support breathing. In economically developed countries, the number of ventilator-dependent children is increasing and many require nurse-led home healthcare services. Debate has been polarized as to whether life on a ventilator is in the best interests of all children. The perspectives of ventilator-dependent children are largely absent in the literature. METHODS: Principles derived from Heideggerian phenomenology were used to describe how children and their parents interpreted and rationalized the quality of the child's 'ventilator-dependent' life and their health. The study had two phases with data collection commencing in 1998 and completed in 2004. RESULTS: The participants were 35 ventilator-dependent children, and 50 mothers and 17 fathers of 53 children. Emergent themes revealed some common features across this heterogeneous group. Ventilation made the children feel better and if they had sufficient breath, they experienced better quality of life. It was not possible to delineate the magnitude of health gain or benefit, especially amongst preverbal children and those with profound sensory impairments. Quality of life equated to quality of life experiences, but some children experienced negative social impacts and low self-esteem. Home healthcare services were not designed to bring about the desired social outcomes that children identified. Parent's accounts showed subtle more negative differences. CONCLUSION: The acceptance of children's dependence on machines to live has brought about the need for nursing, medical, social and biological boundaries to be redefined, especially around children's meanings of their health, what they understand to be good quality of life, and what they need to achieve it. Flexible, high quality child-focused homecare is likely to improve children's outcomes.
AIM: This paper reports a qualitative study with ventilator-dependent children and their parents, describing their experiences and meanings concerning the children's health and quality of life. BACKGROUND: Recent medical advances have enabled children to survive premature birth, congenital anomalies, critical illness and accidents with long-term use of mechanical ventilation to support breathing. In economically developed countries, the number of ventilator-dependent children is increasing and many require nurse-led home healthcare services. Debate has been polarized as to whether life on a ventilator is in the best interests of all children. The perspectives of ventilator-dependent children are largely absent in the literature. METHODS: Principles derived from Heideggerian phenomenology were used to describe how children and their parents interpreted and rationalized the quality of the child's 'ventilator-dependent' life and their health. The study had two phases with data collection commencing in 1998 and completed in 2004. RESULTS: The participants were 35 ventilator-dependent children, and 50 mothers and 17 fathers of 53 children. Emergent themes revealed some common features across this heterogeneous group. Ventilation made the children feel better and if they had sufficient breath, they experienced better quality of life. It was not possible to delineate the magnitude of health gain or benefit, especially amongst preverbal children and those with profound sensory impairments. Quality of life equated to quality of life experiences, but some children experienced negative social impacts and low self-esteem. Home healthcare services were not designed to bring about the desired social outcomes that children identified. Parent's accounts showed subtle more negative differences. CONCLUSION: The acceptance of children's dependence on machines to live has brought about the need for nursing, medical, social and biological boundaries to be redefined, especially around children's meanings of their health, what they understand to be good quality of life, and what they need to achieve it. Flexible, high quality child-focused homecare is likely to improve children's outcomes.
Authors: Rafael González; Amaya Bustinza; Sarah N Fernandez; Miriam García; Silvia Rodriguez; Ma Ángeles García-Teresa; Mirella Gaboli; Silvia García; Olaia Sardón; Diego García; Antonio Salcedo; Antonio Rodríguez; Ma Carmen Luna; Arturo Hernández; Catalina González; Alberto Medina; Estela Pérez; Alicia Callejón; Juan D Toledo; Mercedes Herranz; Jesús López-Herce Journal: Eur J Pediatr Date: 2017-08-12 Impact factor: 3.183
Authors: Janet Mattson; Johan Lunnelie; Tim Löfholm; Elina Scheers Andersson; Ragnhild E Aune; Gunilla Björling Journal: SAGE Open Nurs Date: 2022-04-26