Perspectives and wishes for patient and family centred care as expressed by adult intensive care survivors and family-members: A qualitative interview study

OBJECTIVES: To explore perspectives and wishes for patient and family centred care among adult patients and family-members with recent experience of admission to an adult intensive care unit.

RESEARCH DESIGN: An explorative descriptive study using an inductive thematic analysis. Semi-structured interviews with adults (≥18 years) who had experienced admission ≥48 hours to an adult intensive care unit as a patient or family-member within the previous three months. Interview data were analysed used the six phases of thematic analysis, described by Braun and Clarke. Semi-structured interviews with adults (≥18 years) who had experienced admission ≥48 hours to an adult intensive care unit as a patient or family-member within the previous three months. Interview data were analysed used the six phases of thematic analysis, described by Braun and Clarke.

SETTING: Participants were recruited from six general (mixed surgical and medical) units in the Capital Region of Denmark.

FINDINGS: From fifteen interviews a total of 23 participants (8 patients and 15 family-members) described their perspectives and wishes for patient- and family-centred care. Three main themes were identified: 1) Ongoing dialogue is fundamental. Both scheduled and spontaneous information-sharing is important. 2) Humanizing. High-quality treatment was especially evident for participants when staff maintain a humanized attitude. 3) Equipping family to navigate. We found a range of specific suggestions of attention that may help patients and family-members to navigate during admission.

CONCLUSIONS: We found that patients' and family-members' perspectives and wishes for PFCC centred around ongoing dialogue with staff and the importance of humanizing the ICU environment. Patients and family members needed to share and have their knowledge, concerns and perspectives brought forth and acknowledged by staff. Participants emphasized the pivotal role staff have in equipping patients and family-members to cope in the unit and supporting specifically family-members in fulfilling their role as advocates and supporters of the patient.