Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 1–25 of 47 publications
Circle of light education model: Death education for children in end of life care
This study delves into the Circle of Light educational framework, focusing on death education for children receiving end of life care. It highlights the importance of such education in fostering psychological and spiritual well-being and alleviating death-rela…
An Evolutionary Concept Analysis of Pediatric Hospice and Palliative
Purpose: This study aimed to clarify the concept of pediatric hospice and palliative care through conceptual analysis. It also sought to identify the differences between related concepts such as pediatric death care and pediatric spiritual care, in order to pr…
Discussion of Spirituality in Family Conferences of Infants with Neurologic Conditions
INTRODUCTION: Spirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences. OBJECTIVES: We sought to characterize the frequency an…
Exploring the experiences of children's palliative care for forced migrant families in the United Kingdom: an interpretative phenomenological study
Introduction: This study focused on understanding the experiences of forced migrant families and the health care professionals who care for them within palliative care. Palliative care for children requires an active, holistic approach to care, with a focus up…
Respecting Spirituality During Extubations: Holding Space for Miracles and Legacy with Reactive Comfort Plans
Baby M experienced hypoxic ischemic encephalopathy with four subsequent unsuccessful extubations. He would not survive without potentially irreversible long-term ventilation. His parents lovingly decided against interventions that would not "fix" his underlyin…
Short Term Coping-Behaviors and Postpartum Health in a Population-Based Study of Women with a Live Birth, Stillbirth, or Neonatal Death
Objective: Responding to the National Institutes of Health Working Group's call for research on the psychological impact of stillbirth, we compared coping-related behaviors by outcome of an index birth (surviving live birth or perinatal loss - stillbirth or ne…
Spiritual Care in PICUs: A U.S. Survey of 245 Training Fellows 2020-2021*
OBJECTIVES:
To understand the perspectives of pediatric fellows training in critical care subspecialties about providing spiritual care.
DESIGN:
Cross-sectional survey of United States National Residency Matching Program pediatric fellows training in critical…
The Spiritual Dimension of Parents' Experiences Caring for a Seriously Ill Child: An Interview Study
BACKGROUND: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these parents are co…
Utilization of a prenatal palliative care consultation pathway for congenital heart disease
Background: A large Midwestern hospital has no consistent process for prenatal integration of palliative care for parents carrying a fetus diagnosed with complex congenital heart disease. The palliative care team is typically consulted postnatally when infants…
Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home
The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely il…
Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life
Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children…
End of Life in Pediatrics: The "Relief" of Poetry on Pain by Reaching Children's Spirituality
This article provides a brief overview on the role of poetry into the pediatric palliative and end-of-life care setting. Starting from examples, the author deepens possible applications to the world of children and offers a poem, from his direct experience, wh…
In every detail: spiritual care in pediatric palliative care perceived by healthcare providers
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country.
Objectives: To identify spi…
Physician Perceptions of and Barriers to Pediatric Palliative Care for Children with Cancer in Brazil
PURPOSEEarly integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early integration…
Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions
This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected through s…
Pediatric and Adult Cardiologists' and Respirologists' Referral Practices to Palliative Care
Context: Children and adults with advanced cardiac or respiratory disease may benefit from specialized palliative care (SPC), but there has been little SPC research in this area. Objective(s): To explore pediatric cardiologists' and respirologists' (pediatric …
Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provi…
“Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine
Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Par…
'I'm praying for a miracle': characteristics of spiritual statements in paediatric intensive care unit care conferences
CONTEXT: Supporting spiritual needs is a well-established aspect of palliative care, but no data exist regarding how physicians engage with patients and families around spirituality during care conferences in paediatric intensive care units (PICU). OBJECTIVES:…
Shared spiritual beliefs between adolescents with cancer and their families
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an i…
Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study
Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion.
Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with t…
The fragile spirituality of parents whose children died in the pediatric intensive care unit
Spiritual care is recognized as a relevant dimension of health care. In the context of pediatric palliative end-of-life care, spirituality entails more than adhering to a spiritual worldview or religion. Interviews with parents whose critically ill child died …
Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning
In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound imp…
Parental Use of Religion and Spirituality in Medical Decision-Making
New medical technology has extended children's lives, creating challenges for parental decision-making. Many parents utilize religion or spirituality (R/S). This study examined the semi-structured interviews of 24 parents who made significant medical decisions…
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