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

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.