The number of children who are ventilator dependent and being cared for at home by their families has risen dramatically in recent years. Parents’ roles are often taken for granted, with little recognition of the effect of the shift from parent to carer on families.

The aim of this literature review was to explore parents’ perceptions of the burden of care placed on them during the transition of their child who depends on a ventilator from hospital to home, the support they received during discharge and any gaps in continuity of care. An electronic database search was undertaken of PubMed, Cumulative Index to Nursing and Allied Health Literature and PsycINFO. After exclusion a total of 14 studies were reviewed and critiqued. The main themes identified were: transition: preparing for discharge; feelings of isolation on transitioning home; and the strive for normality or a sense of control felt by parents and family members.

Where facilitated, families are more than capable of providing skilled, competent care at home to a child who is ventilator dependent. The long-term effects of this arrangement are largely unknown so far, but the literature shows that it has a substantial psychosocial effect on families. More information and education for healthcare professionals is required about the experiences of these families to appreciate the struggles they face after discharge. This may have a positive effect on how nurses and other professionals support parents during the discharge process.