The transition from children to young people living with home mechanical ventilation.

PURPOSE: This study aimed to examine how young people living with Home Mechanical Ventilation experience the transition from childhood to young adulthood in relation to everyday life, perceived health and transition into adult professional healthcare. METHODS: Nine young adults (three females and six males aged 18-31) were interviewed, and data was primary analysed using phenomenological hermeneutics. In the actual study, data was reworked using secondary analysis as described by Beck. Two interviewees were ventilated invasively and six non-invasively, and one was treated with continuous positive airway pressure (CPAP). RESULTS: The results are presented in two main categories. First; moving towards adulthood; and second, To handle changes in health and healthcare contacts. The study highlights the importance of ongoing social relations and being part of a socializing and physically active community. The transfer from paediatric to adult healthcare was solid and worked out well but was a process in which the participants struggled to find their own voice. CONCLUSIONS: The transition into adulthood is a sensitive and challenging time for young people with HMV, but stable, close relationships and a well-organized transfer can enable this group to feel safe and able to find and use their own voice.

Young adults' narratives about living with home mechanical ventilation - a phenomenological hermeneutical study.

PURPOSE: An 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 METHODS: Data 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. RESULT: A 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. CONCLUSION: The 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.

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.

A scoping review of older patients' health-related quality of life, recovery and well-being after intensive care.

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.

Children with home mechanical ventilation-Parents' health-related quality of life, family functioning and sleep.

AIM: Children 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. METHODS: Questionnaires 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. RESULTS: There 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. CONCLUSION: Sleep 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.

Siblings' Lived Experiences of Having a Brother or Sister With Home Mechanical Ventilation: A Phenomenological Hermeneutical Study.

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.

'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation.

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.

Personal care assistants' experiences of caring for people on home mechanical ventilation.

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.