Browse Items · Pediatric Palliative Care Library

"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care

Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT…

"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice Care

BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. OBJECTIVE(S): This study explored US…

"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer

PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely…

A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

A Sociocultural Approach to Children's Perceptions of Death and Loss.

By employing the phenomenographic approach, the present study explored children's cognitive understanding of and emotional responses to death and bereavement. Participants included 52 Korean, 16 Chinese, and 16 Chinese American children ages 5-6.…

Aims And Tasks In Parental Caregiving For Children Receiving Palliative Care At Home: A Qualitative Study

In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear…

Assessing HeartSong as a Neonatal Music Therapy Intervention: A Qualitative Study on Personal and Professional Caregivers' Perspectives

Abstract Background: The music therapy HeartSong intervention pairs newborn infant heartbeats with parents' Song of Kin. Formal evidence on professional and personal caregiver perspectives of this intervention is lacking. Purpose: This survey study…

Associations between Music Therapy, Pain and Heart Rate for Children Receiving Palliative Care

Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established.…

Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study

Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team…

Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers

Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers…

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…

Bittersweet: a qualitative exploration of mothers' experiences of raising a single surviving twin

Loss of a child from a multiple birth pregnancy is not uncommon yet the idiographic experience of parents who have lost a single twin from a multiple birth pregnancy is underexplored. This novel study sought to explore the experiences of mothers…

Brazilian Neonatal Nurses' Palliative Care Experiences

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study

BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare…

Challenges experienced by paediatricians providing palliative care to children; A thematic analysis

Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with…

Children with palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study

Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be…

Tags: 2023, 2023 SE5 - Low Resource Setting, acute lymphoblastic leukemia/di [Diagnosis], Adolescent, Adult, Anga G, Article, BMC Palliative Care, bronchiectasis/di [Diagnosis], Cerebral Palsy/di [Diagnosis], Child, Child Health Care, Clinical Article, congenital heart disease/di [Diagnosis], congenital malformation/di [Diagnosis], Controlled Study, Descriptive Research, Duke T, dyspnea/co [Complication], Female, germ cell tumor/di [Diagnosis], Guillain Barre syndrome/di [Diagnosis], health care need, Health Care Personnel, Health Care Quality, hemosiderosis/di [Diagnosis], Human, Human immunodeficiency virus infection/di [Diagnosis], Infant, Interview, job experience, Kilalang C, knowledge gap, Male, malignant neoplasm/di [Diagnosis], Medical Record, Melanesia, neuroblastoma/di [Diagnosis], Only Child, Pacific Islands, Pain/co [complication], Palliative Care, Palliative Therapy, Papua New Guinea, Parent, pediatric ward, Preschool Child, pulmonary hypertension/di [Diagnosis], Pulsan F, Qualitative Research, retinoblastoma/di [Diagnosis], School Child, thalassemia/di [Diagnosis], Thematic Analysis, tuberculosis/di [Diagnosis], Vince JD, Watch V

Children's complex health: Maternal experiences of care and decision making

An increasing number of children with complex life-limiting and life-threatening conditions are being cared for at home by their parents. Negative impacts on maternal health are now being recognised. This study sought to voice parental experiences to…

Consulting parents bereaved by childhood cancer: A qualitative study to improve bereavement services

Twelve Australian parents bereaved by childhood cancer were interviewed

Tags: 2023, 2023 SE3 - Oncology, Bereavement, Childhood Neoplasms, Communication, Death studies, Empathy, Human, Interviews, Loxton I, Oxlad M, Parents, Patient Care, Perry A, Psychosocial Factors, Qualitative Studies, Referral And Consultation, Thematic Analysis

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.…

Dying At Lifes Beginning: Experiences Of Parents And Health Professionals In Switzerland When An ’in Utero' Diagnosis Incompatible With Life Is Made.

OBJECTIVE:
The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of…

Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital.…

Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media

Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on…

Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: A qualitative study

Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are…

Grief and coping of parents whose child has a constant life-threatening disability, hypoplastic left heart syndrome with reference to the Dual-Process Model

This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and…

Tags: 2018, Cantwell-Bartl A, Child, Coping, Death studies, Grief, Human, Hypoplastic Left Heart Syndrome -- Diagnosis, Hypoplastic Left Heart Syndrome -- Psychosocial Factors, Hypoplastic Left Heart Syndrome -- Therapy, Interviews, July 2018 List, Models, Parent-child Relations, Parental Attitudes, Psychological, Recovery, Secondary Analysis, Thematic Analysis

Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review

Background: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric…

Healthy siblings' perspectives about paediatric palliative care: A qualitative systematic review and meta-synthesis

Background: Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide…

Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents

Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's…

How do children’s nurses working in hospices manage emotional labour and professional integrity in long-term relationships with parents?

Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care…

I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child

Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s,…

Identifying the Types of Support Needed by Interprofessional Teams Providing Pediatric End-of-Life Care: A Thematic Analysis

Background: Despite the number of interprofessional team members caring for children at the end of life, little evidence exists on how institutions can support their staff in providing care in these situations. Objective: We sought to evaluate which…

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…

Interdisciplinary Perspectives on the Value of Massage Therapy in a Pediatric Hospice

Canuck Place Children's Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist…

It Was a Shared Duty': Bereaved Fathers' Perspectives, Experiences and Practices in Relation to their Partner's Lactation after Infant Death

This exploratory study targets a significant gap in the lactation and bereavement literature by exploring bereaved fathers' experiences, perspectives and practices in relation to their partner's lactation after stillbirth, neonatal or infant death.…

Juggling amidst complexity' – Hospice staff's experience of providing palliative care for infants referred from a neonatal unit

Hospice has been pivotal to children's palliative care provision in the United Kingdom (UK) for more than 3 decades. Some hospices have recently expanded to include care of infants transferred from neonatal units as well as antenatal referrals.…

Tags: 2019, Attitude of Health Personnel -- Evaluation, England, Focus Groups, Hospice Care -- In Infancy and Childhood, Hospital Units, Human, Infant, Infant Care, Journal of Neonatal Nursing, Mendizabal-Espinosa R M, Neonatal Nursing, October 2019 List, Palliative Care -- In Infancy and Childhood, Price J E, Qualitative Studies, Referral And Consultation, Thematic Analysis, Work Experiences

Max's legacy: an evaluation of the impacts of baby loss on staff and families

Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as…

Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices

AIM: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally, there are a growing number of young…

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…

My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own Condition

Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language…

Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies

This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the…

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