Exploring patients' and relatives' needs and perceptions regarding family participation in essential care in the intensive care unit: A qualitative study

Boukje M Dijkstra; Karin M Felten-Barentsz; Margriet J M van der Valk; Johannes G van der Hoeven; Lisette Schoonhoven; Lilian C M Vloet

doi:10.1016/j.iccn.2023.103525

Exploring patients' and relatives' needs and perceptions regarding family participation in essential care in the intensive care unit: A qualitative study

Intensive Crit Care Nurs. 2023 Dec:79:103525. doi: 10.1016/j.iccn.2023.103525. Epub 2023 Aug 18.

Authors

Boukje M Dijkstra¹, Karin M Felten-Barentsz², Margriet J M van der Valk³, Johannes G van der Hoeven⁴, Lisette Schoonhoven⁵, Lilian C M Vloet⁶

Affiliations

¹ Research Department Emergency and Critical Care, HAN University of Applied Sciences, School of Health Studies, Nijmegen, the Netherlands; Intensive Care Unit, Radboud University Medical Center, Nijmegen, the Netherlands. Electronic address: Boukje.Dijkstra@han.nl.
² Research Department Emergency and Critical Care, HAN University of Applied Sciences, School of Health Studies, Nijmegen, the Netherlands; Department of Rehabilitation - Physical Therapy, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, the Netherlands.
³ Research Department Emergency and Critical Care, HAN University of Applied Sciences, School of Health Studies, Nijmegen, the Netherlands.
⁴ Intensive Care Unit, Radboud University Medical Center, Nijmegen, the Netherlands.
⁵ Nursing Science, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands; School of Health Sciences, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, UK.
⁶ Research Department Emergency and Critical Care, HAN University of Applied Sciences, School of Health Studies, Nijmegen, the Netherlands; IQ Healthcare, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, the Netherlands; Foundation Family and Patient Centered Intensive Care, Alkmaar, the Netherlands.

PMID: 37598505
DOI: 10.1016/j.iccn.2023.103525

Abstract

Objectives: To examine the needs, perceptions and influencing factors according to former adult intensive care unit patients and relatives with regard to family participation in essential care in the unit.

Research design: A qualitative interpretive descriptive study using inductive thematic analysis.

Setting: Twelve pairs of former Dutch patients and their relatives were interviewed within two months after the patient's discharge from the unit between December 2017 and April 2018.

Findings: Four themes emerged: the family's history, the patient's condition, supporting the patient and supporting the relative. The family's history, in particular the relationship with the patient and former experience with care, determined the level of participation in essential care. The level of participation was also influenced by the patient's condition, more specifically level of consciousness, stability of the patient's situation and length of the patient's stay. The third theme, supporting the patient, related to presence/being able to 'be there' for the patient and a mostly positive attitude towards family participation. The last theme was supporting the relative, with three subthemes associated with relatives' needs and perceptions: (dis)comfort with participation in essential care, need for invitation and support, and concern about the possible strain experienced by relatives.

Conclusion: Supporting the patient and supporting the relative are reflecting the needs and perceptions of patients and relatives regarding family participation in essential care. Both the family's history and the patient's condition influence the relative's level of participation. Intensive care unit nurses and other healthcare providers could take these themes into account when encouraging family participation in essential care.

Implications for clinical practice: Patients' and relatives' needs and perceptions of family participation in essential care in the intensive care unit vary. Family participation in essential care is influenced by the family's history and the patient's condition. Healthcare providers could take these findings into account when implementing family participation in essential care.

Keywords: Essential care; Family centred care; Family participation; Intensive care unit; Nursing; Relatives.

MeSH terms

Adult
Consciousness*
Health Personnel*
Humans
Intensive Care Units
Patient Discharge
Patients