First name
Myra
Last name
Bluebond-Langner

Title

Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children.

Year of Publication

2019

Date Published

2019 Dec 05

ISSN Number

1098-4275

Abstract

<p>Most pediatric clinicians aspire to promote the physical, emotional, and developmental well-being of children, hoping to bestow a long and healthy life. Yet, some infants, children, and adolescents confront life-threatening illnesses and life-shortening conditions. Over the past 70 years, the clinician's response to the suffering of these children has evolved from veritable neglect to the development of pediatric palliative care as a subspecialty devoted to their care. In this article, we review the history of how clinicians have understood and responded to the suffering of children with serious illnesses, highlighting how an initially narrow focus on anxiety eventually transformed into a holistic, multidimensional awareness of suffering. Through this transition, and influenced by the adult hospice movement, pediatric palliative care emerged as a new discipline. Becoming a discipline, however, has not been a panacea. We conclude by highlighting challenges remaining for the next generation of pediatric palliative care professionals to address.</p>

DOI

10.1542/peds.2019-1741

Alternate Title

Pediatrics

PMID

31806669

Title

Challenges and Priorities for Pediatric Palliative Care Research in the United States and Similar Practice Settings: Report from a Pediatric Palliative Care Research Network Workshop.

Year of Publication

2019

Date Published

2019 Aug 21

ISSN Number

1873-6513

Abstract

<p><strong>CONTEXT: </strong>In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship.</p>

<p><strong>OBJECTIVES: </strong>The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities.</p>

<p><strong>METHODS: </strong>The workshop focused on PPC research topics and methods, including: outcomes measurement, qualitative inquiry, analyses of "big data," prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report.</p>

<p><strong>RESULTS: </strong>Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research upon participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision-making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education.</p>

<p><strong>CONCLUSION: </strong>These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.</p>

DOI

10.1016/j.jpainsymman.2019.08.011

Alternate Title

J Pain Symptom Manage

PMID

31445136

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