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Children living with Home Mechanical Ventilation: The everyday life experiences of the children, their siblings, parents and personal care assistants
University of Borås, Faculty of Caring Science, Work Life and Social Welfare.ORCID iD: 0000-0003-2972-6908
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 [en]
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: urn:nbn:se:hb:diva-22049ISBN: 978-91-88838-60-5 (print)ISBN: 978-91-88838-61-2 (electronic)OAI: oai:DiVA.org:hb-22049DiVA, id: diva2:1371515
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
List of papers
1. Personal care assistants’ experiences of caring for people with home mechanical ventilation
Open this publication in new window or tab >>Personal care assistants’ experiences of caring for people with home mechanical ventilation
2017 (English)In: Advances in Health Care Sciences Research Conference Stockholm November 15-16th 2017, 2017Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

BACKGROUND Research which focus personal care assistants’ (PCA) experience of caring for people with HMV are sparse. Today’s trend to move advanced care from hospital to home will continue to expand. This study will create knowledge about a growing group of PCAs working within this area. Developments in medical technology, care and treatment have increased the survival of people with serious illnesses or injuries which have contributed to a shift of health care interventions. This means that a raising numbers of technology-assisted people with chronic illnesses can live their lives in their own homes. One such group comprises those using HMV. Ventilator support may be required either during sleep or over 24 hours invasively (with tracheostomy) or non-invasively (with a facemask).

AIM The aim of this study was to describe PCAs’ experiences of working with a ventilator-assisted person (adult or child) at home.

METHOD Fifteen semi- structured interviews with PCAs supporting a child or adult using home mechanical ventilation (HMV) were conducted. Two men and thirteen women participated. Their working experience with HMV users ranged from one to 17 years (median 6 years). The analysis has an inductive and interpretive approach to qualitative content analysis as described by Elo and Kyngäs.

RESULTS The results are presented as five categories: Being part of a complex work situation; Taking on a multidimensional responsibility; Caring carried out in someone’s home; Creating boundaries in an environment with indistinct limits; and Being close to another’s body and soul.

CONCLUSION There is international consensus that advanced home care will continue to expand. Well-prepared PCAs is a prerequisite in this development which brings into focus issues concerning organization, management and the field of knowledge and responsibilities of the PCAs. It is important to gain more knowledge and understanding of the field in order to plan and perform good quality care.

National Category
Nursing
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-14255 (URN)10.1111/scs.12326 (DOI)27126367 (PubMedID)2-s2.0-85014024192 (Scopus ID)
Conference
Advances in Health Care Sciences Research Conference, Stockholm, November 15-16, 2017
Available from: 2018-05-25 Created: 2018-05-25 Last updated: 2020-01-08Bibliographically approved
2. 'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation.
Open this publication in new window or tab >>'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation.
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.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hb:diva-13611 (URN)10.1177/1367493517749328 (DOI)000429864300002 ()29298495 (PubMedID)2-s2.0-85042497737 (Scopus ID)
Available from: 2018-02-01 Created: 2018-02-01 Last updated: 2020-01-08Bibliographically approved
3. Siblings' Lived Experiences of Having a Brother or Sister With Home Mechanical Ventilation: A Phenomenological Hermeneutical Study
Open this publication in new window or tab >>Siblings' Lived Experiences of Having a Brother or Sister With Home Mechanical Ventilation: A Phenomenological Hermeneutical Study
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.

Keywords
child, family, home mechanical ventilation, sibling relationships, family nursing
National Category
Medical and Health Sciences
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-22052 (URN)10.1177/1074840719863916 (DOI)
Available from: 2019-11-20 Created: 2019-11-20 Last updated: 2020-01-08Bibliographically approved

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Israelsson-Skogsberg, Åsa

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