Caregivers' experiences at home with a ventilator-dependent child.

ABSTRACT

With advancing technology and transformation in health care delivery, more chronically ventilator-dependent children are being discharged to home. Pediatric home health care aims to increase the quality of life of patients and families, decrease cost and duration of hospital stay, and promote community participation in health care delivery. The authors aimed to describe and identify the qualitatively different experiences of primary caregivers who support ventilator-dependent children at home. Through phenomenographic inquiry 17 primary caregivers described their experiences through interviews that were later analyzed using accepted qualitative methods. Seven categories of description and an outcome space were identified, with findings highlighting the unique experience of this group and providing insight into their personal, social, and collective experiences. Outcomes reveal the significant and distinctive nature of understanding and have implications for clinical practice development, health education, policy formulation, social support, and future research in pediatric home health care.