Browse Items · Pediatric Palliative Care Library

"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities

Purpose: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to…

Tags: 2024, Ahmed A, Annals Of Family Medicine, August List 2024, Batres R, CBPR, Communication, Community-Based Participatory Research, Culhane-Pera KA, de la Parra P, Focus Groups, health disparity, Jinhee C, Needle J, pediatric healthcare, Pergament S, Professional-family Relations, Qualitative Research, Sey L

Nursing Perspective of Providing Palliative Care to the Children—A Narrative Review

Introduction Palliative care of children (PCC) is a philosophical and a structured approach to providing tailored care to children with life-threatening diseases. Understanding the role of nurses and empowering them to take up the role of palliative…

Health anxiety by proxy - through the eyes of the parents

Abstract Health anxiety by proxy is a newly described phenomenon where parents worry excessively that their child suffers from a serious illness. In a former study, six parents with distressing worries about their child's health were interviewed to…

Fathers' experiences in the neonatal intensive care unit: a search for control.

OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male…

Engaging Fathers in Pediatric Palliative Care Research

Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A…

Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review

Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric…

Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study

BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by…

Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care

Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in…

Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents

Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect…

Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study

BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and…

Focuses and trends of the studies on pediatric palliative care:A bibliometric analysis from 2004 to 2018

Objectives: To investigate the focuses and trends of the studies on pediatric palliative care (PPC) and provide directions for future research. Method(s): Relevant papers about PPC published from 2004 to 2018 were analyzed using bibliometric analysis…

Tags: 2021, April 2021 List, Bibliometrics, Communication, Decision Making, Hospice And Palliative Care Nursing, International Journal of Nursing Sciences, Li X, Neoplasms, Parents, Pediatrics, Professional-family Relations, Zhang M

Having Therapeutic Conversations With Fathers Grieving the Death of a Child

A child's death is a traumatic life experience for parents. Health-care professionals (HCPs) have sought guidance on how to intervene with grieving parents, particularly with fathers. Having therapeutic conversations is an effective way for HCPs to…

Tags: 2021, April 2021 List, Bereavement, Carnevale F, Castiglione S, Child, Conversation, Death -- In Infancy and Childhood, Dupuis F, Father-child Relations, Fathers -- Psychosocial Factors, Grief, Legault A, Martinez AM, Omega: Journal Of Death & Dying, Professional-family Relations, Proulx MC, Support Psychosocial -- Methods

Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care

BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not…

Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents

Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect…

Long-term nurse-parent relationships in paediatric palliative care: a narrative literature review

BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality,…

Tags: 2019, Anstey S, August 2020 List, Brimble M J, Davies J, Hospice And Palliative Care Nursing, Humans, International Journal of Palliative Nursing, Nurse-patient Relations, Nurses, Object Attachment, Parents, Professional-family Relations, professionalism, Trust

Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit

BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new…

From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional

OBJECTIVE: To understand the meanings assigned by bereaved parents to their relationships with healthcare professionals during the end-of-life hospitalization of their child. METHOD: Qualitative-interpretative study based on hermeneutics. Data were…

Tags: 2019, Bereavement, Child, Death, Family Nursing, Hospitalization, Hospitalized, Misko M D, Neoplasm, Oncology 2019 List, Professional-family Relations, Revista da Escola de Enfermagem da USP, Sa N N, Santos M R D, Szylit R, Wiegand D L

Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff

OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect…

Who are the children using hospice care?

PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics…

Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care

PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses…

Sharing the care: the key-working experiences of professionals and the parents of life-limited children

AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric…

The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring

Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and…

Relational autonomy: moving beyond the limits of isolated individualism

Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical…

Communicating about prognosis: ethical responsibilities of pediatricians and parents

Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because…

Tags: 2014, Adolescent, Adult, Backlog, Child, Communication, Female, Humans, Joffe S, Journal Article, Mack JW, Male, Parents, Pediatrics, Physician-patient Relations, Professional-family Relations, Prognosis, Terminal Care

Because statistics don't tell the whole story: a call for comprehensive care for children with cancer

Meeting the needs of siblings of children with life-limiting illnesses

Siblings of children with life-threatening or life-limiting illnesses can face a number of challenges, yet this is a group that is often unacknowledged as needing specific support. It is essential that the needs of siblings are recognised and…

Tags: 2014, Adaptation, Backlog, Child, Health Services Needs And Demand, Humans, Journal Article, Lane C, Mason J, Nursing Children and Young People, Patient-centered Care, Professional-family Relations, Psychological, Siblings, Social Support, Terminal Care

Parent perceptions of the quality of information received about a child's cancer

BACKGROUND: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. PROCEDURE: We conducted a cross-sectional survey of 194 parents of children with cancer…

Medical ethics in pediatric critical care

Ethically charged situations are common in pediatric critical care. Most situations can be managed with minimal controversy within the medical team or between the team and patients/families. Familiarity with institutional resources, such as hospital…

Advanced care planning discussions with adolescents and young adults with cancer

Exploring perceptions of psychological services in a children's hospice in the United Kingdom

BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers…

Characteristics of family conferences at the bedside versus the conference room in pediatric critical care

OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians…

Prognostic categories and timing of negative prognostic communication from critical care physicians to family members at end-of-life in an intensive care unit

Negative prognostic communication is often delayed in intensive care units, which limits time for families to prepare for end-of-life. This descriptive study, informed by ethnographic methods, was focused on exploring critical care physician…

Tags: 2013, Adolescent, Adult, Aged, Backlog, Communication, Critical Care, Family, Female, Gutierrez KM, Humans, Intensive Care Units, Journal Article, Male, Middle Aged, Nursing Inquiry, Professional-family Relations, Prognosis, Terminal Care

Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?

Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive…

Tags: 2013, Backlog, Brierley J, Child, Conflict (Psychology), Culture, Humans, Intensive Care Units, Journal Article, Journal of Medical Ethics, Linthicum J, Medical Futility, Pediatric, Petros A, Professional-family Relations, Religion and Psychology, Retrospective Studies, Terminal Care, Withholding Treatment

Parents' perspectives on the deaths of their children in two Brazilian paediatric intensive care units

OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative,…

Parental explicit heuristics in decision-making for children with life-threatening illnesses

OBJECTIVE: To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by…

Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol

REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting…

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