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.

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.

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.