Abstract
To understand the different factors that impact on the involvement of adult family members in the care of critically ill patients from the perspective of patients, families and nurses, with the aim to inform the enactment of a patient- and family-centred care intervention to support the patient-family-nurse partnership in care involvement. Existing evidence lacks theoretical underpinning and clarity to support enactment of patient- and family-centred care and involvement of families in the care of the critically ill patient. Qualitative exploratory design using thematic analysis. This study was conducted at two adult intensive care units in two tertiary university hospitals in the central belt of Scotland. Between 2013-2014, we conducted semi-structured interviews with critically ill survivors (n=19) and adult family members (n=21), and five focus groups with nurses (n=15) across both settings. Data were digitally recorded, transcribed verbatim, and uploaded in NVivo 10. Data were analysed thematically using a constructivist epistemology. Ethical approval was obtained prior to data collection. Data are reported according to the Consolidated Criteria for Reporting Qualitative Research checklist. Family's situational awareness; the perceived self in care partnership; rapport and trust; and personal and family attributes were the main factors that affected family involvement in care. Two key themes were identified as principles to enact patient- and family-centred care in adult intensive care units: "Need for 'Doing family'" and "Negotiations in care involvement." Negotiating involvement in care requires consideration of patients' and family members' values of doing family and the development of a constructive patient-family-nurses' partnership. Future policy and research should consider patients' and family's needs to demonstrate family bonds within a negotiated process in care participation, when developing tools and frameworks to promote patient- and family-centred care in adult intensive care units.
Highlights
An increasing emphasis on improving the service user experience with the focus explicitly on the promotion of Patient and Family-Centred Care (PFCC) across11 the health and social care sector is well supported by international (IHI, 2014, WHO, 2007) and national (CQC, 2008) organisations
Two key themes were identified as principles to 52 enact PFCC in adult intensive care units (ICU); “Need for ‘Doing family’” and “Negotiations in care involvement”
Factors that impact on the operationalisation of Patient and Family-Centred
Summary
An increasing emphasis on improving the service user experience with the focus explicitly on the promotion of Patient and Family-Centred Care (PFCC) across11 the health and social care sector is well supported by international (IHI, 2014, WHO, 2007) and national (CQC, 2008) organisations. 18 beneficial partnerships among health care providers, patients and families (Johnson and Abraham, 2012). Any involvement of a family member (FM) should be grounded in a negotiated and mutually beneficial partnership between patients, families and health care professionals (Kean, 2010). Existing evidence lacks theoretical underpinning and clarity to support enactment of patient and family-centred care and involvement of families in the care of the critically ill patient. 41 communication, (iv) decision-making, and (v) contributing to care (Olding et al., 2016) Both reviews stressed that PFCC interventions were widely diverse, and lacked theoretical underpinning and clarity to support enactment of PFCC throughout the ICU stay
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