Browse Items · Pediatric Palliative Care Library

Palliative care of children with brain tumors: a parental perspective

OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents…

Ethnicity, race, and advance directives in an inpatient palliative care consultation service.

OBJECTIVE: Although race and ethnic background are known to be important factors in the completion of advance directives, there is a dearth of literature specifically investigating the effect of race and ethnicity on advance directive completion rate…

Tags: 2013, 80 And Over, Adult, Advance Directives/eh [Ethnology], African Americans/statistics & numerical data, Aged, Asian Continental Ancestry Group/sn [Statistics & Numerical Data], Attitude to Death/eh [Ethnology], Backlog, Cooper LB, Cross-cultural Comparison, Decision Making, DNAR, European Continental Ancestry Group/sn [Statistics & Numerical Data], Female, Hispanic Americans/sn [Statistics & Numerical Data], Humans, Journal Article, Lesser ML, Liberman T, Male, Middle Aged, Mir Tanveer P, New York/ep [Epidemiology], Nouryan CN, Palliative & Supportive Care, Palliative Care/og [Organization & Administration], Pekmezaris R, Program Evaluation, Referral and Consultation/og [Organization & Administration], Resuscitation Orders, Sison CP, Spirituality, Terminal Care/og [organization & Administration], Wolf-Klein GP, Zaide GB

Cultural and religious considerations in pediatric palliative care

OBJECTIVE: A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare.…

Assumptive World Views and the Grief Reactions of Parents of Murdered Children

The World Assumptions Scale and the Revised Grief Experience Inventory was administered to parents of murdered children and parents bereaved by sudden accidental death. Compared to parents bereaved by accidents, parents bereaved by homicide showed…

Tags: 2000, Backlog, Journal Article, Marwit SJ, Omega, Spirituality, Wickie SK

Spirituality In Adolescent Patients

Adolescence, the transition between childhood and adulthood, represents a time of rapid biological, neurocognitive, and psychosocial changes. These changes have important implications for the development and evolution of adolescent spirituality,…

Tags: 2017, Adolescent, Annals Of Palliative Medicine, Illness, September 2017 List, Spirituality, Weaver M, Wratchford D

Quantum Nonlocality: Does Nature also Perform the Trick Via a Biological Route?

While we do not yet know how Nature is nonlocal, interdisciplinary research in the areas of physics, biophysics and neuroscience going back over 4 decades, reveals that Nature is nonlocal. Nonlocality appears to have been observed between human…

Tags: 2010, Backlog, death bed visions, deathbed coincidences, Journal Article, Neuroquantology, non-local effects, numinous reality, Spirituality, telepathy, Thaheld FH

Time of Change? The Spiritual Challenges of Bereavement and Loss

Coping with grief can include, in part, trying either to assimilate the loss into the existing worldview and its spiritual and religious components, or changing those components in congruence with the new reality. This spiritual or religious…

Tags: 2006, Backlog, Calhoun LG, Journal Article, Omega, Spirituality, Tedeschi RG

The role of doctors' religious faith and ethnicity in taking ethically controversial decisions during end-of-life care

BACKGROUND AND AIMS: The prevalence of religious faith among doctors and its relationship with decision-making in end-of-life care is not well documented. The impact of ethnic differences on this is also poorly understood. This study compares…

Tags: 2010, Backlog, Journal Article, Journal of Medical Ethics, Seale C, Spirituality

Beacon in the storm: an exploration of the spirituality and faith of parents whose children have cancer

The purpose of this article is to describe the role of spirituality as a coping mechanism in the lives of parents of children with cancer. This exploratory study was conducted using a dominant-less dominant research design with phenomenology as the…

Tags: 2006, Adaptation, Attitude to Health Child Female Health Services Needs and Demand Humans Life Change Events Male Middle Aged, Backlog, Issues Compr Pediatr Nurs, Journal Article, Mannell RC, Neoplasms/psychology Nurse's Role Nursing Methodology Research Oncologic Nursing Ontario Parents/, PedPal Lit, Psychological Adult, psychology Pediatric Nursing Problem Solving Professional-Family Relations Qualitative Research Questionnaires Religion and Psychology Research Design Social Support, Schneider M, Spirituality

Neonatal end-of-life spiritual support care

The death of an infant is a profound loss that may complicate, disrupt, or end relationships between parents; and lead to maladaptive grieving, long-term decreased quality of life, and symptoms related to psychological morbidity. Facing neonatal loss…

Spiritual assessment and spiritual care offerings as a standard of care in pediatric oncology: A recommendation informed by a systematic review of the literature

Children with cancer and their families experience shifts in spiritual wellness from diagnosis through treatment and survivorship or bereavement. An interdisciplinary team conducted a systematic review of quantitative and qualitative research on…

Posttraumatic growth in parents and pediatric patients

BACKGROUND: Pediatric medical experiences are potentially traumatic but may lead to psychological growth. OBJECTIVE: The study objective was to synthesize the published literature regarding posttraumatic growth (PTG) in parents and patients with…

Spiritual Care: Minimizing the Vulnerability of Parents Whose Children With Cancer Face the End of Life

There is a distinct lack of literature related to the spiritual care of parents whose children with cancer are at the end of life. This has led to a dearth in evidence about how nurses may intervene with spiritual care interventions to best support…

Tags: 2019, Cancer, Journal Of Pediatric Oncology Nursing, Oncology 2019 List, Parents, Pediatric, Petersen C L, Spirituality

Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback

OBJECTIVE: To develop a practical set of measures for routine monitoring, performance feedback, and improvement in the quality of palliative care in the intensive care unit (ICU). DESIGN: Use of an interdisciplinary iterative process to create a…

Fatalism revisited

OBJECTIVES: To review the concept of fatalism among African Americans by discussing how religiosity/spirituality may guide them in seeking cancer care in a positive rather than a fatalistic way. DATA SOURCES: Nursing, social science, and medical…

Tags: 2008, African Continental Ancestry Group/psychology, Backlog, Fogel J, Humans, Journal Article, Morgan PD, Neoplasms/psychology/therapy, Seminars In Oncology Nursing, Spirituality, Tyler ID

Psychosocial and spiritual needs of children living with a life-limiting illness

Quality end-of-life care includes the management of distressing symptoms; provisions of care, including the assessment and management of psychosocial and spiritual needs; and respite from diagnosis through death and bereavement. Meeting the…

Application of Critical Race Theory in Palliative Care Research: A Scoping Review

Context: Structural racism negatively impacts individuals and populations. In the medical literature, including that of palliative care, structural racism's influence on interracial differences in outcomes remains poorly examined. Examining the…

Tags: 2022, Curseen KA, Hospice And Palliative Care Nursing, Hospice Care, Johnson K, Journal of Pain and Symptom Management, Kavalieratos D, Kunihiro SK, Marcewicz L, Palliative Care, Racial Groups, racism, September 2022 List, Spirituality

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…

Tags: 2019, Betz J, Chaplaincy, December 2019 List, Decision-making, Desjardins CM, Ferrara B, Grossoehme DH, Journal of Health Care Chaplaincy, Kitamura EA, Malcolm HV, Mueller M, Parents, Ragsdale JR, Spirituality

A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality

To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer…

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…

Near Death Experiences: A New Algorithmic Approach to Verifying Consciousness Outside the Brain

Quantum mechanics arose to explain 'wobbles' in predicted effects of Newtonian physics, such as the stability of electron orbitals. Similarly, scientifically verified phenomena in the field of neuroscience which contradict known theories of brain…

Tags: 2010, Backlog, Consciousness, Journal Article, Laws V, near death experience, Neuroquantology, OBE, out of body experience, Perry E, Spirituality

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

The reflections you get': an exploration of body image and cachexia.

BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people…

Use Of Spiritual Coping Strategies By Gender, Race/ethnicity, And Religion At 1 And 3 Months After Infant's/child's Intensive Care Unit Death

BACKGROUND AND PURPOSE: In the United States, 57,000 children (newborn to 18 years) die annually. Bereaved parents may rely on religious or spiritual beliefs in their grief. The study's purpose was to examine differences in parents' use of spiritual…

Tags: 2017, Advanced Practice Nurse, Bereaved Parents, Brooten D, Emotional Adjustment, Hawthorne D M, Journal Of The American Association Of Nurse Practitioners, Nicu/picu, Nurse Practitioner, October 2017 List, Pediatrics, Spirituality, Youngblut JM

Building a new world: habits and practices of healing following the death of a child

The goal of this interpretive phenomenological study is to describe and understand significant habits and practices developed by families bereaved from the sudden and unexpected loss of their children. Data were primarily collected through the…

Nurses' Experiences Of Spiritual Communication With Seriously Iii Children.

The goal of this study was to explore nurse experiences in communication with children about spiritual topics in order to develop training in this area.
BACKGROUND:
Although spiritual care is essential in pediatric palliative care, few providers…

Exploring The Spiritual Needs Of Families With Seriously Ill Children

Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for…

Non Local Effects in The Process of Dying: Can Quantum Mechanics Help?

Studies in hospices and nursing homes have shown that a number of different phenomena are associated with the mental states of the dying. In the days or weeks before death the dying person may have premonitions, often unrecognised, of their impending…

Tags: 2010, Backlog, death bed visions, deathbed coincidences, Fenwick P, Journal Article, Neuroquantology, non-local effects, numinous reality, Spirituality, telepathy

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…

Tags: 2020, End-of-life Care, Falkenburg J L, Ganzevoort R R, Journal of Health Care Chaplaincy, Pediatric Intensive Care, September 2020 List, Spirituality, Tibboel D, van Dijk M

Spirituality among parents of children with cancer in a Middle Eastern country

PURPOSE: Family caregivers of children with cancer face emotional, psychological, and spiritual challenges coping with their child's illness. For ensuring comprehensive multidisciplinary pediatric care, there is a need to understand and define what…

Tags: 2019, Adaptation, Cancer, Caregivers, Children, Developing World 2019 List, Doumit M A A, European Journal Of Oncology Nursing, Hermeneutics, Lebanon, Majdalani M, Palliative Care, Psychological, Qualitative Study, Rahi A C, Saab R, Spirituality

The Needs Of Children With Life-limiting Conditions: A Healthcare-provider-based Model

Pediatric hospice and palliative care has progressed in recent years with the development of new programs and models of care. Missing from the empirical literature, however is a model of the needs of children. The purpose of the present study was to…

Making sense of loss and benefiting from the experience: two construals of meaning

Theoretical models of the adjustment process following loss and trauma have emphasized the critical role that finding meaning plays. Yet evidence in support of these models is meager, and definitions of meaning have been too broad to facilitate a…

Tags: 1998, Adult, Analysis of Variance, Backlog, Cognition, Davis CG, Female, Grief, Humans, Interpersonal Relations, Journal Article, Journal Of Personality And Social Psychology, Larson J, Life Change Events, Male, Middle Aged, Nolen-Hoeksema S, Social Adjustment, Spirituality

Addressing spirituality in pediatric hospice and palliative care

Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable…

Spiritual Frameworks In Pediatric Palliative Care: Understanding Parental Decision-making

Parents of seriously ill children are charged with making complicated medical decisions, and many of those decisions are made during their children's hospitalizations. As medical staff seek to support parents, it is important for them to understand…

Tags: 2017, Child, Davidson Lindy Grief, Decision Making, June 2017 List, Only Child, Palliative Care, parental decision-making, Pediatric Palliative Care, spiritual frameworks, Spirituality

The Provision Of Spiritual And Pastoral Care Following Stillbirth In Ireland: A Mixed Methods Study

Background The death of a baby is recognised as one of the most difficult bereavements with life-long impact for parents. How bereaved parents are cared for influences their grief journey. Optimal holistic care is provided when the physical,…

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…

Helping Parents Cope: A Model Home-Care Program for the Dying Child

Tags: Book/Book Section, Carlson P, Henry WF, Martinson IM, Simacek M, Spirituality

Evidence for healing interventions with perinatal bereavement

The purpose of this article is to explore the concept of perinatal grief and evidence-based healing interventions for it. The loss of a pregnancy or death of an infant causes profound grief, yet society has long minimized or ignored this grief, which…

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…

Tags: 2023, Calandrino A, Child, Death, Humanities, Humans, J Pain Symptom Manage, October List 2023, Only Child, Pain, Palliative Care, Pediatrics, Poetry, Spiritual therapies, Spirituality

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