Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery

Abstract

BackgroundNeonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision should include identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressed while also enhancing facilitators. The current study qualitatively explored perceptions of neonatal nurses about facilitators and barriers to delivery of palliative care and also the impact of the regional location of the unit.MethodsThe study was conducted at the Townsville Hospital, which is the only regional tertiary neonatal unit in Australia. Semi-structured interviews were conducted with a purposive sample of eight neonatal nurses. Thematic analysis of the data was conducted within a phenomenological framework.ResultsSix themes emerged regarding family support and staff factors that were perceived to support the provision of palliative care of a high quality. Staff factors included leadership, clinical knowledge, and morals, values, and beliefs. Family support factors included emotional support, communication, and practices within the unit. Five themes emerged from the data that were perceived to be barriers to providing quality palliative care. Staff perceived education, lack of privacy, isolation, staff characteristics and systemic (policy, and procedure) factors to impact upon palliative care provision. The regional location of the unit also presented unique facilitators and barriers to care.ConclusionsThis study identified and explored facilitators and barriers in the delivery of quality palliative care for neonates in a regional tertiary setting. Themes identified suggested that a strengths-approach, which engages and amplifies facilitating factors while identified barriers are addressed or minimized, would be successful in supporting quality palliative care provision in the neonatal care setting. Study findings will be used to inform clinical education and practice.

Perception of health professionals about neonatal palliative care

“…One of the aspects covers the possible introduction of amendments/ optimization of the physical structure and changes in the current operating regulations. Data collected is in accordance with another study accessed and showed that there are some obstacles that hinder the full implementation of NPC: the absence of facilities that would provide the child and his parents with the right isolation and privacy and some factors associated with the department's procedures and policies (27) . The ideal situation would be to have the NB and his family transferred to a private room and make sure that relatives will be protected and will not be forgotten (6) .…”

“…There is a wide range of suggestions for improving the team performance that focus mainly on the need for training (27)(28) . Another important aspect is team sharing and reflection.…”

“…The experience in caring for newborns in an end-of-life situation is reflected in feelings and difficulties. The feelings related to the NB's severe clinical condition are associated with technological imperatives and with the yielding to the temptation of using any technology available, even when one knows that it will but hopelessly prolong the NB's life (27) . The feelings related to the parents come from the empathy provided by health professionals but also from the awareness that dealing with the parents' expectations and desires is one of the most difficult areas in health care provision.…”

Perception, Knowledge and Barriers to End of Life Palliative Care among Neonatal and Pediatric Intensive Care Physicians

“…It is often evidenced by lack of staff and adequate care even though it is easy for the immediate family members to access the hospital [19]. In our opinion, this situation makes the neonatal care more complicated especially when the local nurses decide whether or not the neonates will be transferred to the local hospital.…”

“…In our opinion, this situation makes the neonatal care more complicated especially when the local nurses decide whether or not the neonates will be transferred to the local hospital. As discussed by Kilkulen M and coauthors, the use of telemedicine and the use of documented guidelines are the most critical factors that facilitate the smooth transfer of neonates to a palliative care unit close to their home [19][20][21].…”