The lived experience of family-centred care by primary caregivers of critically ill children in the pediatric intensive care unit

The unexpected admission of a child to the pediatric intensive care unit (PICU) creates feelings of uncertainty, distress, and fear and is a devastating experience for primary caregivers. Health care providers must address primary caregivers` concerns to enhance primary caregivers’ coping abilities. While a family-centred approach to care can assist in diminishing uneasy feelings experienced by primary caregivers, this philosophy of care is not consistently used in everyday practice. The PICU is a unique area of care that focuses on restoring the health of critically ill children with the use of machines and equipment. However, the use of technology for life sustaining measures creates additional responsibilities for health care providers, potentially compromising the quality of patient care. There is evidence to support that the involvement of the primary caregiver in the care of the critically child can address the gap that commonly exists between technology and holistic patient care. Furthermore, involvement in care increases primary caregivers’ satisfaction with the care their child receives and may also improve patient outcomes. Most importantly, the involvement of primary caregivers in the care of the critically ill child encompasses a family-centred approach to care. By increasing health care provider’s awareness of family-centred care within the PICU, primary caregiver’s needs may be more effectively addressed during this devastating and vulnerable time. Health care providers are key players in the promotion of family-centred care in the PICU; however, they are often faced with multiple challenges and barriers. Increasing health care providers’ awareness around the components of family-centred care can facilitate its implementation into practice by understanding how primary care givers define and experience ii family-centred care. Accordingly, a qualitative study guided by the philosophy of hermeneutic phenomenology was conducted to elicit a detailed descrip