Of the 74% of UK childhood deaths that occur in hospital, an increasing number – up to 65% – occur in PICU. There is little information about the impact of this on those who provide minute-to minute care of the children and their families, the bedside nurses.
The objectives of this study were to explore the lived experiences, attitudes and practice of nurses delivering PICU end-of-life care (EOLC).
Maximum variation sampling: range of roles and clinical experience to identify potential participants who may hold different views. Qualitative approach with face-to-face semi-structured interviews away from the bedside. (Build rapport, tackle hierarchy and enable undiluted, in depth, exploration.)
Researcher introduced broad topic areas, then specific questioning responsive to participant replies.
Areas: clinical background (‘ice-breaker’); experiences caring for children at EOLC; view of what good outcome entails; any experiences taking children home or to hospice for EOLC.; challenges faced providing EOLC; discussions surrounding EOLC (who/when/how documentation. Recollected case EOLC done well and one where done badly
Interview process designed to maximise richest data. Face-to-face interviews to obtain detailed investigation of participant’s personal perspectives within complex systems. Qualitative methodology sought and preserved original lived experience of participants and offer insight into individuals’ subjective lived-experiences, providing rich descriptions contextualised to participants personal settings and social meanings. Data recorded, transcribed and analysed thematically.
Seven participants. Main themes were facilitating factors and challenges faced providing optimal EOLC for children and families. Themes included: offering choice to families; meeting family’s needs; past experience; relationships with families; conflict in a few hard cases; communication; uncertainty and lack of time. Participants consider they do this well most of the time and find this aspect of work hugely satisfying when done well but extremely hard when there are difficulties
This study provided rich insights into the lived experiences of nurses caring for children at end of life in PICU. We demonstrated the values and models of good practice as well as the barriers encountered. There continues to be a need to advance the evidence base in order to improve this aspect of care.