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- Israelsson-Skogsberg, Åsa, 1968-, et al.
(author)
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'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation
- 2018
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In: Journal of Child Health Care. - : SAGE Publications. - 1367-4935 .- 1741-2889. ; 22:1, s. 6-18
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Journal article (peer-reviewed)abstract
- 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.
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| 2. |
- Israelsson-Skogsberg, Åsa, 1968-, et al.
(author)
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Siblings' Lived Experiences of Having a Brother or Sister With Home Mechanical Ventilation: A Phenomenological Hermeneutical Study
- 2019
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In: Journal of Family Nursing. - : SAGE Publications. - 1074-8407 .- 1552-549X.
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Journal article (peer-reviewed)abstract
- 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.
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| 3. |
- Israelsson-Skogsberg, Åsa, 1968-, et al.
(author)
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Children with home mechanical ventilation : parents' health-related quality of life, family functioning and sleep
- 2020
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In: Acta Paediatrica. - : John Wiley & Sons. - 0803-5253 .- 1651-2227. ; 109:9, s. 1807-1814
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Journal article (peer-reviewed)abstract
- AimChildren requiring home mechanical ventilation (HMV) have grown in number and complexity. Parents of children with HMV are often responsible for the advanced homecare. This study explored the health‐related quality of life (HRQoL), family functioning and sleep in parents of children with HMV. A secondary aim was to explore the impact on HRQoL, family functioning and sleep of selected potential determinants.MethodsQuestionnaires were completed by 45 mothers and 40 fathers, to 55 children receiving HMV. Parents were identified via respiratory clinics in the Swedish national quality register for oxygen and home respiratory treatment and invited to participate between December 2016 and December 2018.ResultsThere were no differences between mothers and fathers overall HRQoL or family functioning reports, although differences within the physical (P < .043) and cognitive (P < .009) functioning dimensions were found. One of four parents reported moderate or severe insomnia. The variability in HRQoL and family functioning was predicted by HMV mode and sleep quality to an extent of 45% and 21%, respectively.ConclusionSleep quality and the child's HMV mode predicted parental HRQoL and family functioning. The results underscore the importance of evaluating parents' sleep and of being aware that invasive ventilation influences parental HRQoL and family functioning.
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| 4. |
- Israelsson-Skogsberg, Åsa, 1968-
(author)
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Interviewing children with home mechanical ventilation – privileges and challenges
- 2017
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In: 23rd Annual Qualitative Health Research Conference 2017, Québec City, Québec, Canada.
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Conference paper (peer-reviewed)abstract
- 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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