| 1. |
- Gustafsson, Anna, et al.
(författare)
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Oral health plays second fiddle in palliative care: an interview study with registered nurses in home healthcare
- 2021
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Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Oral health is crucial to the experience of well-being, and symptoms from the mouth are common at the end of life. Palliative care aims to identify and treat symptoms early to avoid unnecessary suffering and is thus an important part of nursing in home healthcare. The aim of this study was to illustrate the professional reflections of registered nurses about oral health amongst patients in palliative care, who are being cared for in a home healthcare setting.Results: The results showed oral health in end-of-life care, to be an area marked by responsibility and ethical considerations. This was seen in all four partly overlapping themes that emerged through the analysis: Oral health is easily overlooked in palliative care, Oral health is everybody’s but in reality nobody’s responsibility, Patient integrity can be an obstacle for oral health, and Focus on oral health is urgently needed. The mouth is often not included as part of the daily basic care routine, by the registered nurses and the home healthcare staff, until the patient is near end of life. Moreover, neither does the patient tell about symptoms from the mouth. The interpreted whole indicates that the registered nurses had a bad conscience about not doing what they are actually responsible for and ought to do.Conclusion: The oral health of patients at the end of life risks being forgotten or falling between the cracks, due to the nurses’ scattered tasks and unclear delimitations between their, and other professionals’ responsibilities. The responsibilities of registered nurses are also ethically demanding, since their intent to respect the patient’s integrity could mean that in some cases the patients does not allow them to help with oral health. To reduce the risk that oral health is overlooked, clearer demarcation and guidelines on the division of responsibilities are required. Routines that clearly implement early and recurring oral health assessments in home healthcare as well as continuing education updates on oral health and oral care are also needed.
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| 2. |
- Israelsson-Skogsberg, Åsa, et al.
(författare)
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A scoping review of older patients' health-related quality of life, recovery and well-being after intensive care
- 2023
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Ingår i: Nursing Open. - 2054-1058. ; 10:9, s. 5900-5919
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Forskningsöversikt (refereegranskat)abstract
- Aims: In the present study, we aimed to determine how Health-Related Quality of Life (HRQoL), recovery (function and capacity in daily life) and well-being are followed up and characterised in persons ≥65 years of age who were being cared for in an intensive care unit (ICU). Design: A scoping review. Methods: CINAHL, MEDLINE (Ovid) and PsycINFO databases were searched in October 2021. 20 studies met the inclusion criteria. The scoping review followed the principles outlined by Arksey and O'Malley, and the Preferred Reporting Items for Systematic Review and Meta-analyses (PRISMA) checklist and Joanna Briggs Institute (JBI) framework were used. Results: Results are presented under five subheadings: Study characteristics, Type of studies, Methods for follow-up, health-related quality of life, and Recovery. Time seems to be an important factor regarding HRQoL among older patients being cared for in an ICU, with most elderly survivors perceiving their HRQoL as acceptable after 1 year. Nevertheless, several studies showed patients' willingness to be readmitted to the ICU if necessary, indicating that life is worth fighting for. Patient or Public Contribution: Due to the design of the study, this study involves no patient or public contribution.
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| 3. |
- Israelsson-Skogsberg, Åsa
(författare)
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Barn och ungdomar med hemventilatorbehanling – erfarenheter av dagligt liv
- 2018
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Ingår i: Livets möjligheter, en nationell konferens om personer med flerfunktionsnedsättning och deras anhöriga. Stockholm, 23-24 april, 2018.
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Konferensbidrag (refereegranskat)abstract
- 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 omvärldenSlutsats 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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| 4. |
- Israelsson-Skogsberg, Åsa
(författare)
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Children living with Home Mechanical Ventilation : The everyday life experiences of the children, their siblings, parents and personal care assistants
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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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| 5. |
- Israelsson-Skogsberg, Åsa, 1968-, et al.
(författare)
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Children with home mechanical ventilation : parents' health-related quality of life, family functioning and sleep
- 2020
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Ingår i: Acta Paediatrica. - : John Wiley & Sons. - 0803-5253 .- 1651-2227. ; 109:9, s. 1807-1814
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Tidskriftsartikel (refereegranskat)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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| 6. |
- Israelsson-Skogsberg, Åsa, 1968-, et al.
(författare)
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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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Ingår i: Journal of Child Health Care. - : SAGE Publications. - 1367-4935 .- 1741-2889. ; 22:1, s. 6-18
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Tidskriftsartikel (refereegranskat)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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| 7. |
- Israelsson-Skogsberg, Åsa, 1968-
(författare)
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Interviewing children with home mechanical ventilation – privileges and challenges
- 2017
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Ingår i: 23rd Annual Qualitative Health Research Conference 2017, Québec City, Québec, Canada.
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Konferensbidrag (refereegranskat)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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| 8. |
- Israelsson-Skogsberg, Åsa, et al.
(författare)
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Personal care assistants' experiences of caring for people on home mechanical ventilation.
- 2016
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712.
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 9. |
- Israelsson-Skogsberg, Åsa, 1968-, et al.
(författare)
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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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Ingår i: Journal of Family Nursing. - : SAGE Publications. - 1074-8407 .- 1552-549X.
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Tidskriftsartikel (refereegranskat)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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| 10. |
- Israelsson-Skogsberg, Åsa, et al.
(författare)
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Young adults’ narratives about living with home mechanical ventilation – a phenomenological hermeneutical study
- 2023
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Ingår i: Disability and Rehabilitation. - 0963-8288 .- 1464-5165.
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Tidskriftsartikel (refereegranskat)abstract
- PurposeAn increasing number of children and young adults with complex medical conditions and respiratory failure are treated with home mechanical ventilation (HMV). The current study aimed to describe how young adults using HMV experience their everyday life with the ventilator, their physical impairments and their opportunities for an educational and professional career.Materials and methodsData were collected via narrative interviews with nine young HMV users (3 females and 6 males, aged 18–31 years) in their homes. Two were ventilated invasively, six were ventilated non-invasively and one was treated with continuous positive airway pressure (CPAP) via facemask. Data were analysed using a phenomenological hermeneutical method.ResultA multi-professional team contributed to participants’ safety and ability to participate in society through higher education and professional work. A good and valuable life, mostly feeling healthy were experienced but also prejudice and stiffened social society structures.ConclusionThe findings of this study prove the importance of having long-standing access to a competent and supportive available multi-professional healthcare team when living with a long-term complex condition. These teams provided well-functioning human and technological support in everyday lives.Implications for Rehabilitation· An increasing number of children and young adults are treated with home mechanical ventilation due to respiratory failure.· The home mechanical ventilation treatment provided rest from breathing and improved sleep quality in such a way that work and higher studies could be managed.· Longstanding access to a supportive multi-professional healthcare team provided feelings of being safe, which in turn boosted self-confidence in life and preparedness to meet new challenges.
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