Browse Items · Pediatric Palliative Care Library

Storytelling to support legacy making for bereaved parents of children with cancer

Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of…

What Are the Psychosocial Needs of Adolescents and Young Adults with Cancer? A Systematic Review of the Literature

Adolescents and young adults with cancer (AYACs) have become recognized as a unique group in recent years. The unique developmental context and related challenges of being a young person with a cancer diagnosis can lead to a distinct and diverse set…

Tags: 2023, 2025 SE1 - Oncology, administrative health data, Adolescent, Adult, Analgesia, Anticipation, Body Image, cancer center, Cancer Chemotherapy, Cancer Diagnosis, Cancer Palliative Therapy, Cancer Patient, Cancer Prognosis, cancer radiotherapy, Cancer Therapy, Checklist, Childhood Cancer, Chinese Version of the Medical Coping Mode Questionnaire, clinical assessment, clinical evaluation, Condren C, Coping, Data Base, data extraction, Demographics, Depression, Depression Anxiety and Stress Scale-21, developmental stage, Disease Burden, Disease Severity, Distress Syndrome, Dying, Edmonton Classification System of Cancer Pain, emotional support, Fatigue, Female, financial management, Follow Up, Gender Identity, Guerin S, Health Care, Health Personnel Attitude, Hematologic Malignancy, Hospital Anxiety and Depression Scale, Human, illness trajectory, Journal Of Adolescent And Young Adult Oncology, Looney K, Male, malignant neoplasm/rt [Radiotherapy], Mental Health, mood change, Neylon K, occupation, Oncology, Patient Autonomy, Patient Referral, patient-reported outcome, Pediatric Quality of Life Inventory, Personal Experience, Population, Prevalence, program appropriateness, Prospective Study, Psycho-Oncology, psychological aspect, psychosocial care, Psychosocial Intervention, Qualitative Analysis, Qualitative Research, quantitative analysis, Questionnaire, Review, Self Report, Semi Structured Interview, sexual health, Short Form 12, Side Effect, social needs, Social Support, Social Support Rating Scale, Social Worker, solid tumor, Study Design, Symptom, Systematic Review, Terminal Care, Thematic Analysis, unmet medical need, Western Australia, workshop, Young Adult

A Feasibility Study Examining Storytelling Through Music with Bereaved Parents of Children with Cancer (RP212)

Outcomes: 1. Participants will be able to demonstrate knowledge about the gaps in parental bereavement support. 2. Participants will be able to describe the feasibility and process of implementing a community-based expressive arts bereavement…

Paediatric oncologists' perspectives on Strategic solutions to develop Integrated Cancer Palliative Care: feedback intervention theory as an explanatory Framework

Background Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative…

"Death is Not a Dirty Word:" A Qualitative Study of Emergency Clinician End-of-Life Communication

OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is…

DMD-YOUNG: paediatric palliative care for children with a slowly progressive neuromuscular disorder in transition to adulthood

Duchenne muscular dystrophy (DMD) is a severe genetic neuromuscular disease that causes progressive loss of muscle function. As life expectancy in DMD has gradually increased to a current median of 21-39 years, the disease serves as an example of…

From worries to resilience: a qualitative study of the psychosocial experiences of diverse adolescents and young adults with heart failure and their caregivers

BACKGROUND AND OBJECTIVES: Despite advances in treatment and outcomes for paediatric heart failure, both physical and psychosocial comorbidities remain notable among this patient population. We aimed to qualitatively describe the psychosocial…

Tags: 2024, Blume ED, Cardiology In The Young, Coping, Cousino MK, difficulties, February List 2025, Glenn T, Heart Failure, Lumeng J, Miller VA, resiliency, Schumacher KR, Smith C, Wolfe J

Certified Child Life Specialists in Hospice and Palliative Care Organizations: A State of the Profession

Background: Certified Child Life Specialists (CCLSs) provide developmentally appropriate psychosocial care to children to promote positive coping. However, little is known about the current professional landscape and opportunities for professional…

Listen to our voice!' using co-creation and art-based methods to explore the welfare and wellbeing of siblings of children with life-limiting conditions

Sibling of children with a life-limiting condition (LLC) face challenge. Yet there is relatively little research specifically investigating the psychosocial impact on siblings living with a child with an LLC. A qualitative participatory methodology…

Living-loss: A narrative synthesis review of the grief process in parents

Problem: Realizing that a child has a lifelong developmental condition like Autism Spectrum Disorder (ASD) can create feelings of sadness and grief for the parents. It remains unclear, however, how parents deal with and understand these emotions. The…

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 -…

Exploring Bereavement in Pediatric Nursing: A Systematic Review

Introduction: The management of parent’s and family’s bereavement, before, during and after the death of a child is a great challenge for health care professionals (HCPs). Aim: The purpose of this study was to investigate bereavement in pediatric…

Improving Pediatric Residency End-Of-Life Education: A Quality Improvement Approach

Outcomes: 1. Participants will be able to understand that a quality improvement model is an effective method for developing graduate medical education curricula for end-of-life care. 2. Participants will be able to recognize the lack of pediatric…

Experiences of Fathers in Norway Attending an Online Course on Therapeutic Writing After the Death of a Child

After the unexpected death of a child, bereaved parents require prompt access to helpful support systems. Online therapeutic writing courses can make such support accessible. Because few studies have included bereaved fathers as participants, we…

Has Pediatric Palliative Care Become Too Deferential? A Challenge To and For the Field

Outcomes: 1. Utilizing a case-based approach plus content expert didactic presentation, participants will self-report ability to identify 3 defensive mechanisms utilized by caregivers and providers during shared decision making (SDM) that can…

Experiences of pregnancy loss in Israeli first-time expecting fathers: A qualitative study

Abstract The aim of this study was to explore the experiences of pregnancy loss in first-time expecting fathers. Participants were 14 Jewish Israeli men who experienced pregnancy loss that occurred at least 3 months before their participation and who…

Cultivating Gratitude in Bereaved Families: Understanding the Impact of the Bereavement Workshop on the Families of Deceased Patients in the Pediatric Palliative Care Program

Abstract Background Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement care…

Flourishing, religion, and burnout among caregivers working in pediatric palliative care

Introduction: Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not…

The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care

In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are…

Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study

Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an…

The most painful estrangement: Death at birth

More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense,…

Culturally and linguistically diverse men's experiences of support following perinatal death: A qualitative study

Aims and objectives: To explore culturally and linguistically diverse men's experiences of support after perinatal death, including barriers and facilitators to support and how healthcare providers, systems and policies can best support families.…

Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study

Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick…

Coping with cystic fibrosis: An analysis from the sibling's point of view

Abstract Background Cystic fibrosis (CF) is a chronic, life-threatening condition that results in life-long morbidity and premature mortality. CF has a significant impact on healthy siblings' adaptation and well-being. Siblings of patients with a…

Tags: 2021, 2029 SE2 - Parent Perspectives, Child: Care, Health and Development, Chronic Illness, Coping, Cystic Fibrosis, Grounded Theory, Lucidi V, Milo F, psychological adjustment, Ranocchiari S, Siblings, Tabarini P

Parents' Views on What Facilitated or Complicated Their Grief after Losing A Child to Cancer

OBJECTIVES: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to…

Tags: 2020, 2021 Special Edition - Oncology, Bereavement, Coping, Grief, Kreicbergs U, Lövgren M, Palliative & Supportive Care, Parents, Pediatric Oncology, Pohlkamp L, Sveen J

Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer

BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with…

Learning to Hold a Paradox': A Narrative Review of How Ambiguous Loss and Disenfranchised Grief Affects Children in Care

Separation and loss characterise a child's experience in care, yet losses in the care-experienced population have rarely been studied as a possible source of trauma or as events that may justify a grief response. A literature search of five databases…

Sudden Unexpected Death in Childhood in Greater Manchester (United Kingdom): A Five-Year Review (2015–2020)

The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater…

Palliative and end of life care for a child: understanding parents' coping strategies

AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical…

Tags: 2020, 2022 Special Edition 2 - Parent Perspectives, Acta Paediatrica, Child, Coping, Darlington AS, End Of Life, Koh M, Leppard L, Parent, Randall D

Death of an Infant: Accessing the Voices of Bereaved Mothers to Create Healing

AIMS AND OBJECTIVES: To describe the health challenge for mothers whose infants have died and approaches and resources they used to manage the loss. BACKGROUND: The death of an infant is a devastating experience for families. Bereaved mothers have…

Tags: 2020, 2022 Special Edition 2 - Parent Perspectives, Bereavement, Coping, Death and Dying, Gaucher E, Hawthorne DM, Infant, Journal of Clinical Nursing, Joyner R, Liehr P, Nursing, Qualitative Study, Women’s Health

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…

Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer

This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13…

The Challenges, Coping Mechanisms, and the Needs of the Inhospital Parents Caring for Children with Life-limiting Neurological Disorders: A Qualitative Study

OBJECTIVES: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to…

Tags: 2021, Beng KT, challenges, Chan LC, Child, Coping, February 2022 List, Indian Journal Of Palliative Care, Life-limiting Condition, Need, Neurology, paediatric palliative care, Taib F

The Phenomenon of Bereaved Parenting: An Integrative Review of Literature

Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial…

Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer

This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13…

Analysis of how nurses cope facing the death of a paediatric patient

AIMS: To evaluate how nurses cope with the death of a paediatric patient, relate it to the different sociodemographic variables, and to describe personal coping strategies used by nurses in managing the process and accepting the death of the patient.…

Tags: 2020, Afrontamiento, Bosch-Alcaraz A, Coping, Death, Enfermera, Enfermeria Intensiva, Lledó-Morera À, Muerte, Nurse, October 2020 List, Paciente, Paediatrics, Patient, Pediatría

Palliative and end of life care for a child: understanding parents' coping strategies

AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical…

Tags: 2020, Acta Paediatrica, August 2020 List, Child, Coping, Darlington A S, End Of Life, Koh M, Leppard L, Parent, Randall D

Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit

Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of…

Tags: 2020, Advances in Neonatal Care, care planning, Coping, Crist J D, Fortney C A, June 2020 List, neonatal intensive care, Neonate, Palliative Care, Parent, Quinn M, Shared Decision-making, Weiss A B

Mothers of angels: (re)living the death of the child as a coping strategy

Objective: To describe the experiences lived by mothers facing the death of their children. Method: A qualitative, exploratory and descriptive research conducted in Guarapuava-PR, with six participants of the "Marias" group that brings together…

Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration

The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand…

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