| Summary: | A research report submitted to the
Faculty of Health Sciences, University of the Witwatersrand, Johannesburg
In partial fulfilment of the requirements for the degree
of
Master of Science in Nursing
Johannesburg, 2016 === The untimely death of a child in a highly technological intensive care unit evokes
exaggerated feelings of devastation, stress, anger, helplessness and hopelessness in the
child’s family. The reasons are that death occurs suddenly and at times following a
decision to withhold or withdraw life sustaining treatment. As a result; end-of-life care
which incorporates principles of family-centred care is an important aspect of paediatric
nursing. Empowering family members to participate in care plans in providing the child
with a dignified death is a crucially important service that paediatric intensive care nurses
can render. Though nurses yearn to nurture and provide the best care possible in end-oflife
there are challenges that hinder this desire.
The purpose of the study was to identify and describe nurses’ perceptions of behaviours
which are obstacles to or support the provision of effective end-of-life care in paediatric
intensive care units (PICU) at two public urban academic hospitals in Johannesburg. The
study utilised a quantitative approach with a descriptive survey design to collect data
means of the self-administered Paediatric Nurses Perceptions of End-of-Life Care (PEDS)
questionnaire developed by Beckstrand et al. (2010). The total population of eighty seven
(87) paediatric nurses working in paediatric and neonatal intensive care units who met the
inclusion criteria were recruited to respond to the PEDS questionnaire. Sixty two (62)
questionnaires were returned, a seventy two percent (72%) response rate. Descriptive
statistics using SPSS’ version 22 was used to analyse, describe, and summarise data in
consultation with a statistician.
All the nurses (62; 100%) reported delivering direct end-of-life care to paediatric and
neonatal patients during their short (less than 5 years; n=31) to long (6 to more than 30
years; n=31) PICU work experience. Most (48; 77 %) of the nurses were qualified with a
vi
Diploma in Nursing, twelve (21%) were Bachelor’s degree graduates and one (2%)
Doctoral degree prepared nurse, had not participated in a specialised end-of-life care
program (53; 85.5%). Nurses identified and ranked; “poor design of units which do not
allow for either privacy of dying patients and their family members”, “the nurses workload
being too heavy to adequately care for the dying child and grieving family” and “dealing
with anxious families” items, as the major and most frequently occurring obstacles to
delivering optimal end-of-life care. Amongst supportive behaviours items the cohort
ranked “allowing family members adequate time to be alone with the child after he/she
dies”, “providing a peaceful, dignified bedside scene for family members once the child
has died” the highest. The most frequently occurring supportive behaviours identified
were all attributes of a good death. Open ended questionnaire responses identified more
helpful behaviours to end-of-life care relating to physician-nurse interactions.
Though nurses in this study were faced with obstacles perceived to hinder their ability to
provide optimal care to the dying child and family members they reported care
demonstrating behaviours which support the provision of optimal end-of-life care and
most valued by family members. Whilst increasing awareness of end-of-life-care in PICU
the findings of the study have contribute positively in decreasing the dearth of South
African literature on the topic. === MT2016
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