Browse Items · Pediatric Palliative Care Library

Bereaved parent preferences on quality end-of-life care for children with cancer in the South

Purpose: The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South. Method(s): Semi-structured interviews were conducted with parents of children who died 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

Realities and ideals: Experiences and needs of pediatric oncology nurses in communication processes with children and their families at the end-of-life period: A photovoice qualitative study

Effective communication in end-of-life care for pediatric cancer patients is crucial. Yet, limited research focuses on the communication experiences of pediatric oncology nurses during this period. This study aims to investigate the communication…

The Impact of Qualification and Hospice Education on Staff Attitudes during Palliative Care in Pediatric Oncology Wards-A National Survey

Background: Our knowledge about the attitudes of healthcare staff to palliative care in pediatric oncology is scarce. We aimed to assess their perceptions of palliative care in Hungary and find answers to the question of how to provide good…

The role of 'familiarity' and 'normality' in supporting transition to end of life care in paediatric oncology: A qualitative study

Aim: The aim of this study was to explore factors that helped when a child with cancer transitioned to end of life care in a hospital setting. Design: Qualitative exploratory design using reflexive thematic analysis. Methods: In-depth,…

Decision-Making Factors in Advanced or Incurable Childhood Cancer Diagnosis in Low- and Middle- Income Countries

Outcomes: 1. Using a structured approach, participants will self-report the ability to understand the static and dynamic factors that influence treatment decision-making at diagnosis for children presenting with advanced cancer in LMICs. 2.…

Developing a toolkit to support parents' involvement in child death review: an experience-based co-design study

Abstract Background: Understanding why children die is important for grieving parents and for informing system improvements aimed at prevention and future care. Many countries have child death review (CDR) process, but little is known about how best…

"Who Has the Relationship?": Caring for a Shared Population of Children with Medical Complexity

Background: Many academic pediatric centers care for children with medical complexity (CMC) through established complex care and palliative care programs. There are little prior data investigating best practices for collaboration between these two…

Beyond treatment: Understanding family experiences in pediatric palliative care

OBJECTIVES: This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the…

"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…

Living with Pompe disease: results from a qualitative interview study with children and adolescents and their caregivers

Background: Children and adolescents with Pompe disease (PD) face chronic and progressive myopathy requiring time-intensive enzyme replacement therapy (ERT). Little is known about their perspectives on the disease and its treatment. This study…

Tags: 2024, Adolescent, Adult, Article, Caregiver, Child, Clinical Article, cognitive behavioral therapy, Content Analysis, content validity, Disease Severity, Dyspnea, Emotion, emotional appraisal, enzyme replacement, Fatigue, February List 2025, Female, glycogen storage disease type 2, Hahn A, Hennermann JB, Home Care, Huemer M, Human, inborn error of metabolism, Lagler FB, Landolt MA, Life Expectancy, Male, MAXQDA software, Moslinger D, Multicenter Study, Muscle Weakness, musculoskeletal pain, Orphanet Journal Of Rare Diseases, Pain, Pain Intensity, Palliative Therapy, Perception, Pfrimmer C, psychosocial care, Qualitative Analysis, Qualitative Research, Quality Of Life, Questionnaire, Rohrbach M, School Child, Semi Structured Interview, Severity Of Illness Index, social exclusion, Social Support, sore throat, Truninger MI, Vomiting, Werner H, Young Adult

Beyond the healthcare system: The societal and contextual factors impacting parents' participation in decision-making for neonates with life-threatening conditions

Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social…

Drivers that decrease hospital-delivered care in children with medical complexity: Parental perspectives

Background and objective: Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a…

The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study

Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in…

CARING FOR DYING CHILDREN: EXPERIENCES OF FAMILY CAREGIVERS OF CHILDREN RECEIVING PEDIATRIC PALLIATIVE TREATMENT

INTRODUCTION: Caring for children living with life-threatening and life-limiting illnesses can be challenging for families. Parents' roles as primary caregivers can be complex, with extensive responsibilities. METHOD(S): A mixed-design study was…

Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit

Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective(s): To examine sources of and changes in stress among…

Tags: 2024, Adolescent, Adult, Article, Barton KS, Bogetz J, brain ventricle peritoneum shunt, Child, Child Parent Relation, Clinical Article, Cohort Analysis, confusion (uncertainty), Controlled Study, Disease Severity, ethnic background, Father, feeding tube, Female, Health Survey, Home Care, Hospital Admission, hospital discharge, Human, implanted vagus nerve stimulator, intrathecal baclofen pump, Journal of Palliative Medicine, legal guardian, Length Of Stay, Life Expectancy, Male, mortality risk, Neurodisability, noninvasive positive pressure ventilation, October List 2024, Oslin E, Palliative Therapy, Parental Stress, Patient Advocacy, Pediatric Hospital, Pediatric Intensive Care Unit, Personal Experience, Prospective Study, Qualitative Research, Quantitative Study, Rosenberg AR, Semi Structured Interview, Tracheostomy, Trowbridge A, United States, VULNERABILITY, Watson RS, Yi-Frazier J

The impact, perceptions and needs of parents of children with epidermolysis bullosa

Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a…

Barriers to initiating and implementing palliative and end-of-life care for children with life-limiting conditions: a mixed-methods study in a UK children's hospital

Background: To ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges experienced by paediatric healthcare…

Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity

Context: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they…

Grasping the meaning of perinatal palliative care for the multiprofessional team

Objective: To grasp the meaning of perinatal palliative care for the multidisciplinary team. Methods: This is a qualitative study guided by content analysis. The study included 56 health professionals working in maternal and child units of a public…

Understanding and Optimizing Rest and Rejuvenation for Family Caregivers of Children with Medical Complexity

Outcomes: 1. Participants will be able to define and summarize the major themes characterizing CMC family caregivers' experiences of rest, rejuvenation, and respite and then illustrate examples of those themes from family caregivers' stories. 2.…

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is…

People don't realise how much their past experiences affect them in adulthood': A qualitative study of adult siblings' experiences of growing-up with a sister/brother with a childhood life-limiting condition and their perceived support needs

Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite…

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…

Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates

Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations…

Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study

Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured…

What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis

Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual…

A psychological experience assessment protocol of parent caregivers in paediatric palliative care

Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the…

A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers

Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are…

Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study

Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences…

The care for oncologic patients undergoing pediatric palliative care and the griefs of a health team

Introduction: The health care offered to children and adolescents with cancer has been expanded, giving space to orthothanasia and palliative care, with a comprehensive look at the subject facing the threat to the continuity of life, as well as…

Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers

Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada,…

A qualitative exploration of parental perspectives on quality of care for children with serious illnesses

Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate…

Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study

Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative…

What constitutes 'good quality care' from the perspectives of children and young people with life-limiting and life-threatening conditions?

Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of…

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took…

"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions

BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known…

Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation

Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at…

The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team

The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric…

Siblings and End-Of-Life Decision Making in the NICU

Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the…

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