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  • 1.
    Israelsson-Skogsberg, Åsa
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Barn och ungdomar med hemventilatorbehanling – erfarenheter av dagligt liv2018Inngår i: Livets möjligheter, en nationell konferens om personer med flerfunktionsnedsättning och deras anhöriga. Stockholm, 23-24 april, 2018, 2018Konferansepaper (Fagfellevurdert)
    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.

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  • 2.
    Israelsson-Skogsberg, Åsa
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Children living with Home Mechanical Ventilation: The everyday life experiences of the children, their siblings, parents and personal care assistants2019Doktoravhandling, med artikler (Annet vitenskapelig)
    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.

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  • 3.
    Israelsson-Skogsberg, Åsa
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Everyday-life experiences of children and young people with home mechanical ventilation2018Inngår i: 1st International Conference of German Society of Nursing Science. 2018, Berlin, Germany., 2018Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Background and Purpose Developments in medical technology and treatment have increased the survival rates of children with serious illnesses or injuries. Some of these children fail to breathe independently and require home mechanical ventilation (HMV). Only a small number of studies have been published that allowed HMV assisted children to be heard, i.e. interviewed. The aim of this study was therefore to explore everyday-life experiences of children and young people with HMV.

    Methods and Research Focus The presentation is based on nine interviews with children and young people with HMV.

    Methodological and theoretical focus Photovoice was used to supplement the data collection process. Data were analyzed using an inductive and interpretive approach to qualitative content analysis. A comprehensive and careful analysis revealed that the parent's voice was sometimes a part of the child voice when the child's voice itself was not strong enough to conduct a long conversation.

    Results The participants’ everyday-life’s included major challenges, but they made it perfectly clear that it was their way of living. They did not consider themselves as sick unless something extraordinary happened. But everyday-life was also characterized by vulnerability as there always was a risk of becoming seriously ill by harmless viruses and bacteria. They could be denied personal care assistance, which dramatically would reduce their ability to participate in activities outside home. Various technologies; modern medical technology but also social media, blogs and online computer games made the outside world reachable and possible to attend.

    Conclusions Listening to these children’s and young people’s own voices is a prerequisite for gaining knowledge about how to best offer good-quality care which harmonize with a lifestyle that they appreciate.

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  • 4.
    Israelsson-Skogsberg, Åsa
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Interviewing children with home mechanical ventilation – privileges and challenges2017Inngår i: 23rd Annual Qualitative Health Research Conference 2017, Québec City, Québec, Canada, 2017Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Research that focuses on children living with home mechanical ventilation (HMV) and their own voices and perspective is sparse. Developments in medical technology, care and treatment have increased the survival of children with serious illnesses or injuries. This means that a raising numbers of technology-assisted children can live their lives in their own homes. Children with HMV are a part of this unique population. The underlying medical diagnosis varies and may cause severe functional limitations, for example difficulties to breathe, walk, eat, swallow and in some cases talk. Ventilator support may be required either during sleep or over 24 hours invasively (with tracheostomy) or non-invasively (with a facemask). The aim is to present experiences from interviewing children living with faltering voices and communication problems related to ventilator treatment. Nine interviews with children (age range 7-20 years) with HMV were conducted. Photovoice was used to supplement the data collection process. Challenges with interviewing will be presented such as individually tailoring the interview sessions to each person´s wishes, having a parent or a personal care assistant present at the interviews, and the privileges in being welcome to share a moment in the child´s daily life. Data were analyzed using an inductive and interpretive approach to qualitative content analysis. The comprehensive, careful and slow data analysis revealed that the parent's voice was sometimes a part of the voice of the child and had to be handled as one voice. The child's voice itself was not strong enough to conduct a long conversation.

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  • 5.
    Israelsson-Skogsberg, Åsa
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Personal care assistants’ experiences of caring for people with home mechanical ventilation2017Inngår i: Advances in Health Care Sciences Research Conference Stockholm November 15-16th 2017, 2017Konferansepaper (Fagfellevurdert)
    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.

    Fulltekst (pdf)
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  • 6.
    Israelsson-Skogsberg, Åsa
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Siblings' Lived Experiences of Having a Brother or Sister With Home Mechanical Ventilation: A Phenomenological Hermeneutical Study2019Inngår i: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 25, nr 3, s. 469-492Artikkel i tidsskrift (Fagfellevurdert)
    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.

  • 7.
    Israelsson-Skogsberg, Åsa
    et al.
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Hedén, Lena E
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Lindahl, Berit
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Laakso, Katja
    Department of Health and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg.
    'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation.2018Inngår i: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 1, nr 13Artikkel i tidsskrift (Fagfellevurdert)
    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.

  • 8.
    Israelsson-Skogsberg, Åsa
    et al.
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Lindahl, Berit
    Högskolan i Borås, Akademin för vård, arbetsliv och välfärd.
    Personal care assistants' experiences of caring for people on home mechanical ventilation.2016Inngår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Artikkel i tidsskrift (Fagfellevurdert)
    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.

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