Introduction: The number of patients dependent on prolonged mechanical ventilation is still increasing (Chau et al., 2017). Once the child's condition is stabilized, it is possible for him to be discharged to home care and transferred to a home mechanical ventilator. The care of this patients is very difficult, therefore, it is important to prepare family caregivers on all necessary care (Borought a Dougherty, 2016). The aim of thesis: The aim of this thesis was to find out what is included in the educational process in intensive care unit. Secondarily, to get opinion of caregivers on the quality of the education process and finally to present problems, that family caregivers face at home. Methodology: The research was based on the qualitative study. Data collection was conducted by semi-structured interviews with family caregivers, who take care of children on home mechanical ventilation. A total of 9 respondents participated in the research survey. Data analysis was performed in open coding steps followed by categorization and subcategorizations. Result: The research identified important aspects about the education of family caregivers. We found that caregivers perceive the education very positively. However, they also met with several problems - lack of staff time to educate them in hospital, or...

The overall aim of this thesis is to illuminate meanings of the relation between human beings, technology and care, as narrated by critical care nurses and people in need of home mechanical ventilation (HMV). The data are based on narrative research interviews with six intensive care nurses (I), 13 people who were about to start HMV (II), these 13 people were interviewed for a second time six to eight months after HMV had started (III), and nine persons with more than two years HMV experience (IV). The text was analysed using a phenomenological-hermeneutic research method as described by Lindseth and Norberg. The method is developed from the writings of the French philosopher Paul Ricoeur. The findings illuminate meanings of nursing care in an intensive care unit (I) as undertaking the role of advocacy as a caring response to another human being. The basic condition for this caring response depends on the nurses' openness and sensitivity to the needs of patients or patients' next of kin. The nurses were aware of the influence of technology and tried to modify its negative effects. Meanings of becoming dependent on HMV (II) are interpreted and metaphorically expressed as "to get one's breath" and "to hold one's breath" respectively. On the one hand, breathing ensures the cellular oxidation process within the body, but on the other hand there can be "shortness of breath" in "spiritual breathing", and starting HMV will influence patients' whole life situation, body and spirit. After using a ventilator six to eight months, meanings of a life dependent on a ventilator was interpretd as either a closure or an opening of the lived body to oneself, other people and the world. This interpretation is illustrated by two images. A life on a ventilator at home is not to be seen as static being. On the contrary, it is a being which moves and changes over time. Being dependent on a ventilator and living at home, as narrated by adults with more than two years of HMV experience (IV), was interpreted as being able to rise above yourself and your personal boundaries in order to live a good life. These meanings are bound up with experiencing a vital force and interdependency, and despite fragility being able to reach others and the outside world. Design and function of technology had an impact on the lived body. The comprehensive understanding of the four articles (I-IV) unfolded meanings of the relation between human beings, technology and care, as an interchange and a creation of physical and spiritual energy among humans and between human and technology. It could be an experience of the lived body being filled with as well as emptied of energy. This interpretation points at a call for the caring personnel to be attentive and to listen to the voices of the lived body in health and illness, and to bear witness to those who suffer. Technology acts between the person and the world and in order to be embodied, technology must be "transparent", i.e. beautiful and fit to its use.

Improvements in technology have allowed people with tracheostomies to live at home on mechanical ventilation (HMV). Quality of life (QOL) for HMV users has been studied quantitatively, but few qualitative studies have been published. The purpose of this phenomenological study was to explore QOL for individuals with tracheostomies on prolonged HMV focusing on activities of daily living (ADLs) and the role of decision- making. The Roper, Logan, and Tierney activities of living theory were used to categorize activities. Ten participants, 18 years and older, with a tracheostomy and on HMV for at least 6 months were enrolled using purposive sampling. Data were collected through structured, in-depth, face-to-face interviews. Themes that emerged were (a) autonomy, (b) significance of ventilator for well-being, (c) feeling tied up, (d) creating meaning, (e) tipping point, (f) reminiscence, (g) building trust and confidence, (h) adjusting to technology, (i) family support and relationships, and (g) meaning of life. The participants were relatively healthy and their QOL was improved when they were on HMV compared to the hospital. The participants felt empowered that they had control in their daily lives at home when they had competent caregivers and family members for continuity of care. Recommendations for future research would include exploring improved methods of collaboration among health care workers and families in providing holistic care and reducing role strain and isolation in young HMV users. The study may promote positive social change through education for family, health care workers, and the public about strategies to promote independence and subsequent improvement in QOL for individuals on HMV.