Hospital Staff and Family Perspectives Regarding Quality of Pediatric Palliative Care

Contro, Nancy; Larson, Judith; Scofield, Sarah; Sourkes, Barbara M.; Cohen, Harvey J.

doi:10.1542/peds.2003-0857-l

Cited by 286 publications

(275 citation statements)

References 19 publications

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“…Studies of physicians at all career levels, from incoming residents to attending staff, have described physicians' self-reported discomfort with communicating bad news, limited training, and need for more education in this area (5)(6)(7)(8)(9)(10). Studies of parents and families of pediatric patients in both intensive and palliative care settings have described families' need for honest and complete information as well as their general dissatisfaction with the quality of physician communication near the time of their child's death (6,11,12).…”

Section: -Bereaved Parent 2006mentioning

confidence: 99%

“…Studies of parents and families of pediatric patients in both intensive and palliative care settings have described families' need for honest and complete information as well as their general dissatisfaction with the quality of physician communication near the time of their child's death (6,11,12). General guidelines for effective communication of bad news have been described (4,13); however, such guidelines may not apply to all healthcare contexts (1).…”

Section: -Bereaved Parent 2006mentioning

confidence: 99%

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Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit*

Meert

Eggly

Pollack

et al. 2008

Pediatric Critical Care Medicine

216

188

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Objective-Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians communicate more effectively. Our objective is to describe parents' perceptions of their conversations with physicians regarding their child's terminal illness and death in the pediatric intensive care unit (PICU).Design-A secondary analysis of a qualitative interview study. Participants-Fifty-six parents of 48 children who died in the PICU 3-12 months before the study. Setting-SixInterventions-Parents participated in audio recorded semistructured telephone interviews. Interviews were analyzed using established qualitative methods. Measurements and MainResults-Of the 56 parents interviewed, 40 (71%) wanted to provide feedback on the way information about their child's terminal illness and death was communicated by PICU physicians. The most common communication issue identified by parents was the physicians' availability and attentiveness to their informational needs. Other communication issues included honesty and comprehensiveness of information, affect with which information was provided, withholding of information, provision of false hope, complexity of vocabulary, pace of providing information, contradictory information, and physicians' body language.Conclusions-The way bad news is discussed by physicians is extremely important to most parents. Parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend. Withholding prognostic information from parents often leads to false hopes and

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Section: -Bereaved Parent 2006mentioning

confidence: 99%

Section: -Bereaved Parent 2006mentioning

confidence: 99%

Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit*

Meert

Eggly

Pollack

et al. 2008

Pediatric Critical Care Medicine

216

188

View full text Add to dashboard Cite

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“…A stillborn baby can be dealt with in the same manner as a live birth. Following the child's death, there are religious, social and bereavement rituals that are explained in detail by al-Shahri and al-Khenaizan 1415. The bereavement care should include not only the parents but also siblings, grandparents, other relatives, friends, nurses, physicians, and other staff members who have cared for the child.…”

Section: Cultural Sensitivity and Spiritual Supportmentioning

confidence: 99%

The need for hospital-based neonatal palliative care programs in Saudi Arabia

Al‐Alaiyan

Al-Hazzani

2009

Annals of Saudi Medicine

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The terms palliative care, supportive care, and comfort care are used to describe individualized care that can provide a dying person the best quality of life until the end. The term “end-of-life care” is also used in a general sense to refer to all aspects of care of a patient with a potentially fatal condition. While the concept of palliative care is not new, it has only recently been applied to the neonatal population. To the best of our knowledge, none of the neonatal intensive care units (NICUs) in Saudi Arabia have adopted a neonatal program for palliative care. We believe the main reason is lack of knowledge of such programs and the fear of being accused of being heartless and cruel by providing comfort care for dying babies. Comfort care begins with the diagnosis of a life-threatening/terminal condition, and continues throughout the course of illness regardless of the outcome. In this perspective, our aim is to introduce these programs for caregivers in the NICUs in Saudi Arabia. For this purpose, we have reviewed the current recommendations in establishing neonatal palliative care programs and discussed some of the social and religious aspects pertaining to this issue.

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“…Others feel compelled to put grief aside to immediately return to work without having the opportunity to talk about what they have experienced. Further, professionals experience a lack of emotional, psychological, and social support from colleagues and management [2,4] despite expressing a need to talk with others about their experiences to vent their emotions [2] . They try to protect themselves from unwanted feelings by keeping themselves busy with other tasks [2,12] .…”

mentioning

confidence: 99%

“…Emotionally, it is very stressful to take part in a child's illness and death [2,3] . Health care professionals often become emotionally drained and on the edge of burnout.…”

mentioning

confidence: 99%

Supportive interventions and their impact on pediatric health care professionals’ emotional well-being: A systematic literature review

Melin‐Johansson

Day

Axelsson

et al. 2014

Clinical Nursing Studies

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The aim of this systematic literature review was to describe interventions supporting pediatric health care professionals to manage emotional strain when caring for children at the end-of-life. The review included five quantitative studies. Two categories were identified within the results: 1) Supportive interventions with the subcategories of educational interventions, peer support for grief, intensive training course, peer supported storytelling, and debriefing sessions; and 2) Effects of interventions, with the subcategories of increased understanding, increased confidence, creating meaning, grief management, and sense of well-being. Interventions that combine education and dialogue seem supportive, but debriefing might have the most impact on health care professionals' emotional well-being. Future research should focus on deepening the understanding of the meaning of education and dialogue for health care professionals, further investigate the effects of debriefing, and focus on educational training around existential issues.

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Hospital Staff and Family Perspectives Regarding Quality of Pediatric Palliative Care

Cited by 286 publications

References 19 publications

Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit*

Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit*

The need for hospital-based neonatal palliative care programs in Saudi Arabia

Supportive interventions and their impact on pediatric health care professionals’ emotional well-being: A systematic literature review

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