No abstract

When health professionals enter patients' homes, they have to be aware of the risk of transgressing borders of privacy. In addition, devaluing patients' or their informal caregivers' knowledge and their opinions about the care is interpreted as an exercise of institutional power.

Nine adults were interviewed in order to illuminate the meanings of being dependent on a ventilator and living at home. The data were analysed using a phenomenological-hermeneutic method inspired by the philosophy of Ricoeur. Five main themes emerged through the analysis: experiencing home as a safe and comfortable space from which to reach out, experiencing the body as being frail, brave and resilient, striving to live in the present, surrendering oneself to and trusting others, and experiencing technology as a burden and a relief to the lived body. Meanings of being home on a ventilator were interpreted as maintaining autonomy and persistence in interaction with the ventilator and other human beings and being able to rise above yourself and your personal boundaries in order to live a good life. These meanings indicate that aesthetic and ethical values impact on the lived body. They are bound up with experiencing a vital force and interdependency, bringing safety and courage into daily life.

The patients' perspectives and experiences include much useful knowledge of interest for nursing and medical professional practices. More attention needs to be given to these experiences in both home ventilator treatment and research. It is also of great importance for nurses and researchers to encourage manufacturers to develop beautiful and user-friendly design in their products, suitable for 'home use' and not just in hospitals.

In this study, the authors describe the meanings of experiences of being dependent on a ventilator (HMV) and living at home as narrated by 13 people who had been using a ventilator via a mask or tracheostomy for half a year. The analyses revealed various movements across time toward the goal of using the ventilator successfully, and some narratives depicted suffering caused by care. The analyses also yielded different representations of embodiment. These findings were abstracted into two contrasting meanings of the experience of using HMV over time: a closing in or an opening up of the lived body, oneself, to other people and to the world. The authors illustrate this interpretation with two images. Ignorance and negative attitudes on the part of professionals working and/or managing care in the patients' homes are interpreted as causing suffering and intensifying a closed-in mode of being.

No abstract

Children using mechanical ventilation for survival represent a small, but growing, vulnerable population in society. The aim of this study was to describe the existing qualitative research that examined family members' experiences when a child is dependent on ventilator at home. A metasynthesis is an interpretative integration of qualitative research findings based on a systematic literature search. Twelve original research reports focusing on the life situation of ventilator- and technology-dependent children and their families published between 1998 and 2006 were selected as data. Themes from the metasynthesis included experiences of the ill child, siblings, and parents and the meaning of space and place. These findings provide an understanding of the family members' experiences when a child is dependent on a ventilator for survival. Recommendations for future research with this population of families include a greater focus on professional support systems and family strengths and the use of longitudinal research methods using observation and interviews.

Patients in an intensive care unit (ICU) may risk disruption of their circadian rhythm. In an intervention research project a cycled lighting system was set up in an ICU room to support patients' circadian rhythm. Part I aimed to compare experiences of the lighting environment in two rooms with different lighting environments by lighting experiences questionnaire. The results indicated differences in advantage for the patients in the intervention room (n=48), in perception of daytime brightness (p=0.004). In nighttime, greater lighting variation (p=0.005) was found in the ordinary room (n=52). Part II aimed to describe experiences of lighting in the room equipped with the cycled lighting environment. Patients (n=19) were interviewed and the results were presented in categories: "A dynamic lighting environment", "Impact of lighting on patients' sleep", "The impact of lighting/lights on circadian rhythm" and "The lighting calms". Most had experiences from sleep disorders and half had nightmares/sights and circadian rhythm disruption. Nearly all were pleased with the cycled lighting environment, which together with daylight supported their circadian rhythm. In night's actual lighting levels helped patients and staff to connect which engendered feelings of calm.