The Meaning of Food and Multicultural Implications for Perinatal Palliative Care

Chichester, Melanie; Wool, Charlotte

doi:10.1111/1751-486x.12204

Cited by 7 publications

(6 citation statements)

References 57 publications

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“…feeling plagued by “what ifs” in decision making or never having the opportunity to feed one’s baby in the neonatal intensive care unit (NICU)). 9,22,23 Others describe distress parents experience when considering management of symptoms and side effects of a child’s disease and mismanagement of such symptoms. 24 In addition, parents expressed angst over their role of being a parent to multiple children.…”

Section: Resultsmentioning

confidence: 99%

Parent moral distress in serious pediatric illness: A dimensional analysis

Mooney-Doyle

Ulrich

2020

Nurs Ethics

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Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child’s serious illness. Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author’s IRB approved study at the Children’s Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors’ clinical experiences. Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child’s illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.

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Section: Resultsmentioning

confidence: 99%

Parent moral distress in serious pediatric illness: A dimensional analysis

Mooney-Doyle

Ulrich

2020

Nurs Ethics

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“…Families are given private rooms that enable them to spend time with their infant, performing parenting tasks such as holding, bathing, dressing, and taking pictures. Feeding, when possible, is encouraged as part of the bonding process ( 16 ).…”

Section: Nccp’s Guidelines Focused On Comfortmentioning

confidence: 99%

Perinatal palliative care: focus on comfort

McCarthy,

Kenis,

Parravicini

2023

Front. Pediatr.

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Providing comfort while a patient is living with a life-limiting condition or at end of life is the hallmark of palliative care regardless of the patient's age. In perinatal palliative care, the patient is unable to speak for themselves. In this manuscript we will present guidelines garnered from the 15-year experience of the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families along the perinatal journey. We will describe essential tools and strategies necessary to consider in assessing and providing comfort to infants facing a life-limiting diagnosis in utero, born at the cusp of viability or critically ill where the burden of care may outweigh the benefit.

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“…Christianity In Christianity, Jesus is considered the savior, and although beliefs vary between sub-denominations, most Christians view illness as a natural process of the body and even as a testing of their faith. While the death of an infant represents profound loss, most Christians view death as being part of the will of God (7). Table 4 provides guidance for clinicians caring for infants of Christian families, especially for both the infant and the parents.…”

Section: Christianitymentioning

confidence: 99%

“…A prematurely born infant is referred to as a "Nefel": the same word is often applied to an abortus or an infant born with major life-incompatible defects. The word Nefel, in Jewish Chichester and Wool (7) and Wolfson (24).…”

Section: Judaismmentioning

confidence: 99%

Perinatal Palliative Care: Cultural, Spiritual, and Religious Considerations for Parents—What Clinicians Need to Know

Kain

2021

Front. Pediatr.

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For perinatal palliative care (PPC) to be truly holistic, it is imperative that clinicians are conversant in the cultural, spiritual and religious needs of parents. That cultural, spiritual and religious needs for parents should be sensitively attended to are widely touted in the PPC literature and extant protocols, however there is little guidance available to the clinician as to how to meet these needs. The objective of this review article is to report what is known about the cultural, spiritual and religious practices of parents and how this might impact neonates who are born with a life-limiting fetal diagnosis (LLFD). The following religions will be considered—Islam, Buddhism, Hinduism, Judaism, and Christianity—in terms of what may be helpful for clinicians to consider regarding rituals and doctrine related to PPC. Data Sources include PubMed, Ovid, PsycInfo, CINAHL, and Medline from Jan 2000–June 2020 using the terms “perinatal palliative care,” “perinatal hospice,” “cultur*,” and “religiou*.” Inclusion criteria includes all empirical and research studies published in English that focus on the cultural and religious needs of parents who opted to continue a pregnancy in which the fetus had a life-limiting condition or had received perinatal palliative care. Gray literature from religious leaders about the Great Religions were also considered. Results from these sources contributing to the knowledge base of cultural, spiritual and religious dimensions of perinatal palliative care are considered in this paper.

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The Meaning of Food and Multicultural Implications for Perinatal Palliative Care

Cited by 7 publications

References 57 publications

Parent moral distress in serious pediatric illness: A dimensional analysis

Parent moral distress in serious pediatric illness: A dimensional analysis

Perinatal palliative care: focus on comfort

Perinatal Palliative Care: Cultural, Spiritual, and Religious Considerations for Parents—What Clinicians Need to Know

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