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Siblings' Lived Experiences of Having a Brother or Sister With Home Mechanical Ventilation: A Phenomenological Hermeneutical Study
University of Borås, Faculty of Caring Science, Work Life and Social Welfare. (Vårdande i högteknologiska miljöer)ORCID iD: 0000-0003-2972-6908
2019 (English)In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 25, no 3, p. 469-492Article in journal (Refereed) Published
Abstract [en]

Over the past few decades, there has been an increase in the number of children receiving home mechanical ventilation (HMV), and in many ways, families have taken responsibility for the required advanced homecare, which has placed considerable time demands on the family unit. Little is known about the life situation of the siblings of HMV-assisted children; their own voices and an insider perspective are missing. The aim of this study was to illuminate the everyday life experiences of siblings of HMV-assisted children. Data were obtained via interviews with 10 siblings with a median age of 9 years. Data were analyzed using a phenomenological hermeneutical method inspired by the French philosopher Ricoeur. Four themes emerged, all of which suggest that a complex and profound intertwined sibling bond develops that links the past, present, and future. The findings of this study provide valuable information from an insider’s perspective about the meaning of having an HMV-assisted sibling. Family-focused care with particular attention and support for siblings of HMV-assisted children can encourage the development of internal strengths, self-confidence, and resilience.

Place, publisher, year, edition, pages
2019. Vol. 25, no 3, p. 469-492
Keywords [en]
child, family, home mechanical ventilation, sibling relationships, family nursing
National Category
Medical and Health Sciences
Research subject
Människan i vården
Identifiers
URN: urn:nbn:se:hb:diva-22052DOI: 10.1177/1074840719863916ISI: 000479436000001PubMedID: 31354023Scopus ID: 2-s2.0-85070380966OAI: oai:DiVA.org:hb-22052DiVA, id: diva2:1371551
Available from: 2019-11-20 Created: 2019-11-20 Last updated: 2020-01-29Bibliographically 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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