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 description of the lived experience of family-centred care from the perspective of the primary caregiver. Participants in this study consisted of those primary caregivers who had previously had a child admitted to the PICU. Participants were recruited from a large mid-western hospital. In total nine primary caregivers ranging in age from 33 to 44 years with the mean age being 37 years participated in the study. Nine of the participants were mothers and two were fathers. All participants took part in semi-structured, open-ended interviews. A total of nine interviews were conducted with two of the interviews involving both parents. Demographic data and field notes were recorded. All field notes and interview data were transcribed. The transcripts were reviewed repeatedly for significant statements in an attempt to find meaning and understanding through themes. The data analysis revealed the essence of the lived experience of family-centred care to be being present. Three themes communicated the essence and included: (a) physical presence, (b) participation in care and, (c) advocating. Three themes from the data emerged around how primary caregivers defined family-centred care and included: (a) collaboration, (b) being updated and, (c) continuity of care. Finally, primary caregivers identified four conditions that needed to be in place to experience family-centred in the PICU which included: (a) being present for rounds, (b) caring behaviours, (c) feeling welcomed and, (d) support. The findings from this study may be used to guide policy around family-centred care and improve on, or bring new insights around interventions related to family-centred care. Future recommendation for nursing practice, education and research are presented.

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