Background: The number of children with long-term home mechanical ventilation (LTV) is increasing globally. Parents become experts on their children's needs and sometimes know more about LTV treatment than non-specialist healthcare professionals. Nurses caring for LTV-dependent children in intensive care settings adjust to a collaborative caregiving role; however, this interaction has not been described in general paediatric wards.
Aim: To describe nurses' experiences of caring for children and adolescents with established LTV at general paediatric wards.
Study design: We conducted individual semi-structured interviews with 15 participants and analysed the data using qualitative content analysis.
Findings: The study resulted in three categories: 'Building a relationship', 'Working hand in hand with the family', and 'Doing one's best despite the LTV', interpreted into the theme 'Working for reciprocal trust despite frail confidence', which can be seen as foundational to nursing both the child and the family.
Conclusions and relevance to clinical practice: Reciprocal trust between families, nurses and the respiratory team could and should be established swiftly after admission with a discussion of each party's immediate responsibilities and back-up roles.