Pediatric Nurses' Individual and Group Assessments of Palliative, End-of-Life, and Bereavement Care

Abstract

Background: Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital. Objective: To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units. Method: A cross-sectional survey of nurses at a freestanding children's hospital in 2005. Results: Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics. Conclusions: Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs.

The needs of professionals in the palliative care of children and adolescents

“…For team members, as well, there should be an opportunity to receive support following the death of a child. In contrast to the frequently reported reluctance of HCPs, particularly physicians, to consider a palliative care approach in an individual patient [4,30] or to involve existing specialized PPC teams [12,21], the generally positive and open-minded attitude of our study participants toward PPC is remarkable. Besides the recognition and acceptance of boundaries of what medicine can offer and achieve, PPC emerged as a conceivable and distinct concept of care that offers a service and network across different settings and thus meets the needs of families affected by life-limiting illness.…”

“…These included an uncertainty about when to start palliative care, uncertain prognoses in many children, and -probably closely related -unease about communicating a "palliative situation" to parents or to use the word "dying". The discomfort related to the term "palliative" and insufficient communication skills are well known difficulties or even barriers to the provision of PPC [4,5,24,30]. To overcome these, education in basic palliative care and communication skills in addition to PPC specialist support on site have been highlighted in previous studies [13,28].…”

Clinician Perspectives of Barriers in Perinatal Palliative Care

“…The National Consensus Project for Quality Palliative Care (2009) developed guidelines to address barriers and recommends provision of an interdisciplinary team to provide services consistent with a care plan and develop relationships with care takers in the community. Tubbs-Cooley et al (2011) convey importance of tailoring and "selling" palliative care interventions to different groups of providers so that they are willingly and enthusiastically implemented. Some successful programs have used a nurse coordinator to oversee and arrange team meetings, manage referrals both in-house and in the community, and ensure continuity of care (Leuthner & Jones, 2007;Ramer-Chrastek & Thygeson, 2005).…”

Self-Rated Anxiety and Attitude Responses of Pediatric Nurses Surveyed about Providing End of Life Care

“…Pediatric nurses who working in children's hospitals often provide care for terminally ill children. Little is known regarding their beliefs and experiences as hospital staff concerning providing care for those patients [18]. So, this study was undertaken to identify the association between self-rated anxiety and attitudinal responses of pediatric nurses providing care regarding end of life.…”