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'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation.
University of Borås, Faculty of Caring Science, Work Life and Social Welfare.ORCID iD: 0000-0003-2972-6908
University of Borås, Faculty of Caring Science, Work Life and Social Welfare.ORCID iD: 0000-0001-7067-2687
University of Borås, Faculty of Caring Science, Work Life and Social Welfare.ORCID iD: 0000-0002-0047-9723
Department of Health and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg.
2018 (English)In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 1, no 13Article in journal (Refereed) Published
Abstract [en]

Developments in medical technology and treatment have increased the survival rates of children with serious illnesses or injuries, including those receiving home mechanical ventilation, which is a small but growing group. The aim of this study was to explore everyday life experiences of children and young people living with home mechanical ventilation (HMV). Data were obtained through interviews with nine participants. The interviews were supported by photovoice methodology: photographs taken by the participants before or during the interviews were used to facilitate conversation. Interview data were analyzed using qualitative content analysis. The findings revealed that everyday life on a ventilator can be described as including power but simultaneously as characterized by vulnerability to the outside world, comparable to balancing on a tightrope. Various types of technology, both information and communication technology (ICT) and vital medical technology, enabled the participants to engage with the world around them. This study contributes knowledge about the experiences of children and young people with HMV, who depict their lives as good and valuable. The study also underscores, when designing plans and home support, it is necessary to take a sensible approach to personal experiences of what a good life is and what resources are needed to attain and maintain health.

Place, publisher, year, edition, pages
2018. Vol. 1, no 13
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hb:diva-13611DOI: 10.1177/1367493517749328ISI: 000429864300002PubMedID: 29298495Scopus ID: 2-s2.0-85042497737OAI: oai:DiVA.org:hb-13611DiVA, id: diva2:1179560
Available from: 2018-02-01 Created: 2018-02-01 Last updated: 2020-01-08Bibliographically approved
In thesis
1. Children living with Home Mechanical Ventilation: The everyday life experiences of the children, their siblings, parents and personal care assistants
Open this publication in new window or tab >>Children living with Home Mechanical Ventilation: The everyday life experiences of the children, their siblings, parents and personal care assistants
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim of this thesis was to explore the everyday life experiences of living with Home Mechanical Ventilation (HMV) from the perspective of the children and their siblings, parents and personal care assistants.

Methods: Study I describes the experiences of personal care assistants (PCA) working with a ventilator-assisted person at home, based on qualitative content analysis according to Elo and Kyngäs (2008), of 15 semi-structured interviews. Study II, using qualitative content analysis according to Graneheim and Lundman (2004), focuses on exploring everyday life experiences from the perspective of children and young people on HMV, by means of interviews with nine children and young people receiving HMV. Study III, using a phenomenological hermeneutical method, illuminates the everyday life experiences of siblings of children on HMV, based on ten interviews. Study IV explores HRQoL, family functioning and sleep in parents of children on HMV, based on self-reported questionnaires completed by 85 parents.

Results: PCAs working with a person with HMV experienced a complex work situation entailing a multidimensional responsibility. They badly wanted more education, support, and an organisation of their daily work that functioned properly. Children with HMV had the feeling that they were no longer sick, which included having plans and dreams of a future life chosen by themselves. However, at the same time, there were stories of an extraordinary fragility associated with sensitivity to bacteria, battery charges and power outages. The siblings' stories mirror a duality: being mature, empathetic, and knowledgeable while simultaneously being worried, having concerns, taking a lot of responsibility, being forced to grow up fast, and having limited time and space with one’s parents. Parents of children with HMV reported low HRQoL and family functioning in comparison with earlier research addressing parents of children with long-term conditions. One in four parents reported moderate or severe insomnia.

Conclusion: Children receiving HMV may feel that they are fit and living an ordinary life, just like their healthy peers. At the same time the results of this thesis indicate that everyday life in the context of HMV is a fragile construct that in some respects resembles walking a tightrope. The fragility of the construct also affects the everyday lives of the families and the PCAs.

Place, publisher, year, edition, pages
Borås: Högskolan i Borås, 2019
Series
Skrifter från Högskolan i Borås, ISSN 0280-381X ; 101
Keywords
Home Mechanical Ventilation, children, siblings, parents, family, personal care assistants, health, family functioning, everyday life
National Category
Nursing
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-22049 (URN)978-91-88838-60-5 (ISBN)978-91-88838-61-2 (ISBN)
Public defence
2020-01-31, Sparbankssalen, Borås, 10:00
Opponent
Available from: 2020-01-08 Created: 2019-11-20 Last updated: 2020-01-20Bibliographically approved

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Israelsson-Skogsberg, ÅsaHedén, Lena ELindahl, Berit

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