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Young adults’ narratives about living with home mechanical ventilation – a phenomenological hermeneutical study
University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden;Faculty of Medicine, Department of Health Sciences, Lund University, Lund, Sweden.ORCID iD: 0000-0003-2972-6908
Department of Medical Sciences, Respiratory, Allergy and Sleep Research, Uppsala University, Uppsala, Sweden.
University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden.ORCID iD: 0000-0002-0047-9723
Department of Medical Sciences, Respiratory, Allergy and Sleep Research, Uppsala University, Uppsala, Sweden;Department of Women’s and Children’s Health, Neuropediatric Karolinska Institutet, Stockholm, Sweden.
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2023 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165Article in journal (Refereed) Epub ahead of print
Abstract [en]

Purpose

An increasing number of children and young adults with complex medical conditions and respiratory failure are treated with home mechanical ventilation (HMV). The current study aimed to describe how young adults using HMV experience their everyday life with the ventilator, their physical impairments and their opportunities for an educational and professional career.

Materials and methods

Data were collected via narrative interviews with nine young HMV users (3 females and 6 males, aged 18–31 years) in their homes. Two were ventilated invasively, six were ventilated non-invasively and one was treated with continuous positive airway pressure (CPAP) via facemask. Data were analysed using a phenomenological hermeneutical method.

Result

A multi-professional team contributed to participants’ safety and ability to participate in society through higher education and professional work. A good and valuable life, mostly feeling healthy were experienced but also prejudice and stiffened social society structures.

Conclusion

The findings of this study prove the importance of having long-standing access to a competent and supportive available multi-professional healthcare team when living with a long-term complex condition. These teams provided well-functioning human and technological support in everyday lives.

Implications for Rehabilitation

· An increasing number of children and young adults are treated with home mechanical ventilation due to respiratory failure.

· The home mechanical ventilation treatment provided rest from breathing and improved sleep quality in such a way that work and higher studies could be managed.

· Longstanding access to a supportive multi-professional healthcare team provided feelings of being safe, which in turn boosted self-confidence in life and preparedness to meet new challenges.

Place, publisher, year, edition, pages
2023.
Keywords [en]
Disability, experiences, home mechanical ventilation, long-term mechanical ventilation, mechanical ventilation, neuromuscular disease, spinal muscular atrophy, young adults
National Category
Nursing
Research subject
The Human Perspective in Care
Identifiers
URN: urn:nbn:se:hb:diva-30910DOI: 10.1080/09638288.2023.2278187ISI: 001096830200001Scopus ID: 2-s2.0-85176218777OAI: oai:DiVA.org:hb-30910DiVA, id: diva2:1814008
Available from: 2023-11-22 Created: 2023-11-22 Last updated: 2024-02-01Bibliographically approved

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Israelsson-Skogsberg, ÅsaLindahl, Berit

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