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Israelsson-Skogsberg, ÅsaORCID iD iconorcid.org/0000-0003-2972-6908
Publications (4 of 4) Show all publications
Israelsson-Skogsberg, Å. (2019). Children living with Home Mechanical Ventilation: The everyday life experiences of the children, their siblings, parents and personal care assistants. (Doctoral dissertation). Borås: Högskolan i Borås
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
Israelsson-Skogsberg, Å. (2018). Barn och ungdomar med hemventilatorbehanling – erfarenheter av dagligt liv. In: Livets möjligheter, en nationell konferens om personer med flerfunktionsnedsättning och deras anhöriga. Stockholm, 23-24 april, 2018: . Paper presented at Livets möjligheter, en nationell konferens om personer med flerfunktionsnedsättning och deras anhöriga. Stockholm, 23-24 april, 2018.
Open this publication in new window or tab >>Barn och ungdomar med hemventilatorbehanling – erfarenheter av dagligt liv
2018 (Swedish)In: Livets möjligheter, en nationell konferens om personer med flerfunktionsnedsättning och deras anhöriga. Stockholm, 23-24 april, 2018, 2018Conference paper, Oral presentation only (Refereed)
Abstract [sv]

Bakgrund Utvecklingen inom medicinsk teknik och behandling har ökat överlevnaden för barn med allvarliga sjukdomar eller skador. En del av barnen har behov av ventilatorbehandling i hemmet. Gruppen ökar i antal i hela världen (1-3). Det finns ingen exakt kunskap om hur många barn som behandlas i Sverige idag, men ett uppskattat antal är cirka 300 (4). Gruppen växer stadigt, i nivå med trenden som ses internationellt. Det saknas idag forskning i Sverige som fokuserar på hur det dagliga livet kan vara för barn med hemventilatorbehandling.

Syfte Presentationen baseras på nio intervjuer med barn och ungdomar med hemventilator.

Metod Nio barn och ungdomar har intervjuats. Photovoice (5) har använts som komplement i datainsamlingen. Intervjuerna är analyserade med kvalitativ innehållsanalys.

Resultat Deltagarna berättade om en vardag med stora utmaningar, men gjorde samtidigt klart att det var deras sätt att leva. De betraktade sig inte som sjuka, om inte något extraordinärt hände. Vardagen kännetecknades dock av en sårbarhet då det alltid fanns risk att bli allvarligt sjuk, av för andra, ofarliga virus och bakterier. De kunde bli nekade personlig assistans, vilket drastiskt skulle minska möjligheten att delta i aktiviteter utanför hemmet. Modern medicinsk teknologi och sociala medier, bloggar och onlinedataspel var viktigt för att tillgång till och vara en del av omvärlden

Slutsats Studiens resultat visar att barn och ungdomar kan uppleva sitt liv som gott och innehållsrikt trots en svår sjukdom. Genom att lyssna på barnens och ungdomarnas egna röster om vad de anser vara ett gott liv kan vi få mer kunskap och insikt i hur en god och individanpassad vård kan utformas som harmonerar med individuella önskemål om livsstil.

National Category
Nursing
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-14256 (URN)
Conference
Livets möjligheter, en nationell konferens om personer med flerfunktionsnedsättning och deras anhöriga. Stockholm, 23-24 april, 2018
Available from: 2018-05-25 Created: 2018-05-25 Last updated: 2018-06-29Bibliographically approved
Israelsson-Skogsberg, Å., Hedén, L. E., Lindahl, B. & Laakso, K. (2018). 'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation.. Journal of Child Health Care, 1(13)
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
Israelsson-Skogsberg, Å. & Lindahl, B. (2016). Personal care assistants' experiences of caring for people on home mechanical ventilation.. Scandinavian Journal of Caring Sciences
Open this publication in new window or tab >>Personal care assistants' experiences of caring for people on home mechanical ventilation.
2016 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed) Epub ahead of print
Abstract [en]

AIM: The aim of this study was to describe personal care assistants' (PCA) experiences of working with a ventilator-assisted person at home. METHODS: Data were collected from fifteen audiotaped semistructured interviews with PCAs supporting a child or adult using home mechanical ventilation (HMV). Thirteen women and two men participated; their working experience with HMV users ranged from one to 17 years (median 6 years). Data were subjected to qualitative content analysis in an inductive and interpretive manner. FINDINGS: Five categories emerged from the data: 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. CONCLUSIONS: The participants felt very close to the person they worked with, both physically and emotionally. They had a great responsibility and therefore a commensurate need for support, guidance and a well-functioning organisation around the HMV user. There is international consensus that advanced home care will continue to expand and personal care assistance is key in this development. We suggest that one way to move forward for PCAs working with HMV users is to create multiprofessional teams led by a key-person who coordinates the individual needs. More research is needed within this area from a broad perspective including the HMV-assisted persons, relatives, personal care assistants and management organisations.

Keywords
assistive technolog, home health aides, home health care, qualitative studies, ventilator care
National Category
Medical and Health Sciences
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-11463 (URN)10.1111/scs.12326 (DOI)000394988700003 ()27126367 (PubMedID)2-s2.0-85014024192 (Scopus ID)
Available from: 2016-12-14 Created: 2016-12-14 Last updated: 2018-12-21Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-2972-6908

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