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

ABSTRACT

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.

KEYWORDS:

• Burns
• home care
• lived experience
• needs
• pediatric
• parents
• phenomenology
• qualitative research
• ricoeur
• support

Acknowledgments

A sincere “Thank you” to all participating parents for sharing open-heartedly their lived experiences. And a “Thank you” to the Western Norway Regional Health Authority [Helse Vest] for granting LST Lernevall a fully paid PhD grant.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

As part of Lina S. T. Lernevall’s Ph.D. study, this work was supported by the Western Norway Regional Health Authority [grant number 912138].

Notes on contributors

Lina Sophie Toft Lernevall

Lina S.T. Lernevall (RN, MScN, PhD Student) is a true Scandinavian speaking Norwegian, Swedish and Danish fluently. She was born in Sweden, drew up in Denmark and from 2016-2020 she lived in Norway. Her focus has always been patients lived experience in relation to a life with a wound. On 7. November 2022, she defended her doctoral thesis “Support needs of parents of children with burns – A qualitative study of parents’ experiences and need for support in relation to their child’s burn injury during hospitalisation and after discharge” from Department of Global Public Health and Primary Care, the University of Bergen and Department of Plastic, Hand and Reconstructive Surgery, National Burn Centre Haukeland University Hospital, in Norway.

Asgjerd Litleré Moi

Asgjerd L. Moi (CCRN, PhD, Professor) is employed at the Department of Health and Caring Sciences at Western Norway University of Applied Sciences, Norway. Her main research interest is burn care and outcomes research in both critically ill patients and their families, using both quantitative and qualitative methods.

Eva Gjengedal

Eva Gjengedal, (CCRN, PhD Professor Emerita) is affiliated with the Department of Global Public Health and Primary Care at the University of Bergen. She is an intensive care nurse and her main research interests are illness experiences (critically and chronically ill patients), health care providers’ interaction with people with dementia and the role of art in dementia care.

Pia Dreyer

Pia Dreyer (RN, MScN, PhD, Professor in Nursing) is employed both at the Department of Public Health, Section of Nursing, Aarhus University, Denmark; Intensive Care Unit at Aarhus University Hospital, Denmark and Department of Global Public Health and Primary Care at the University of Bergen, Norway. She is a nurse researcher within the context of ICU nursing and Home Mechanical Ventilation. She has a special interest in humanizing ICU nursing and patients lived experiences with mechanical ventilation. Methodologically she works with phenomenology and hermeneutics and has developed a Ricoeur-inspired interpretation method. She is currently Chairman of The Danish Nursing Society (DASYS).