Parents’ lived experience of living with and caring for their burn-injured child in a home setting

PURPOSE: When a burn injured child is discharged from hospital to its home, the responsibility for the after-care treatment is transferred to the parent(s). A knowledge gap exists concerning how parents experience caring for a burn-injured child at home after discharge. The aim is to gain an in-depth understanding of parents’ lived experience of living with and caring for their burn-injured child in a home setting. METHODS: Twenty-four parents of burn-injured children treated at a Norwegian burn centre were interviewed 74 to 195 days after the burn accident (June 2017 to November 2018). A phenomenological hermeneutic approach was chosen, using a Ricoeur-inspired textual in-depth analysis method. NVivo 12 Plus and COREQ were used. RESULTS: Four themes emerged. The parents’ experienced feelings had been embodied and would stay forever. They felt left alone to continue the medical treatment at home without having the necessary skills. The parents grieved over the lost past and feared the unknown future. They longed to meet or be contacted by staff members who knew them and their life situation. CONCLUSIONS: Healthcare professionals should see returning home as part of the course of illness and that right support during the hospital can prevent challenges after discharge.