The research investigates, qualitatively, the experience of primary caregivers of children who are ventilator-dependent and cared for at home. Advances in medical and nursing knowledge and technology have improved the biological outcome of children who are critically ill. As a result, there is an increasing number of children in hospital who are medically stable, however dependent upon long-term respiratory support. Due to the increasing change from healthcare delivery to home care, some ventilator-dependent children are discharged to their primary caregivers who undertake the medical and technical care of the children in their home. A review of the literature indicates limited research examining and addressing issues of pediatric home ventilation. Information concerning the experience and needs of the primary caregivers of an in-home ventilator-dependent child is thus unavailable for effective and appropriate clinical interventions and policy implementation. To address the gap in the literature, a phenomenographic research approach was used to identify and describe a limited number of qualitatively different ways in which the primary caregivers understood their experience of caring for a ventilator-dependent child at home. An in-depth interview was undertaken with each of those seventeen participants and recorded on audiotape for transcribing verbatim. Data was sorted using a qualitative software program--ATLAS.ti.--and analysed using a series of seven analytical steps recommended for a phenomenographic research (Dahlgren and Fallsberg, 1991). The outcomes of the research are seven categories of description with each representing a conception of the experience, and all categories combined constituting an outcome space that presents the structural relations between conceptions. The seven categories of description representing the care-giving experiences of the primary caregivers are: (1) 'Hospital is another world to me'; (2) 'It's a new world'; (3) An ambiguous social identity;(4) The medical technology associated with my child is frightening but necessary;(5) 'The difficulty is having the carers at home'; (6) Social isolation; and (7) The experience of changing as a person. Discussions on the outcomes of the research indicate a need for increased understanding of the 'new world' of the primary caregivers and a recognition and acknowledgement of the distinctive nature of the experience in caring for a ventilator-dependent child at home. Hence, increased financial, respite, psychological and social support are of central importance, in addition to ongoing healthcare research, education, and practice for appropriate policy development, implementation and evaluation.

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