Browse Items · Pediatric Palliative Care Library

Children's and adolescents' perspectives on living with advanced cancer: A meta-synthesis of qualitative research

Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families

CONTEXT: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes…

Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer

Background: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical…

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,…

Assessment of knowledge, attitude, and practice and associated factors towards palliative care among health care providers to the pediatric oncology patients in southern Philippines

Background: Palliative care in the Philippines is categorized as 3A, considered to have localized hospice care provision; however, lack of education and awareness are dismal and accounted as the biggest challenges for the health care providers and…

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…

THE DEVELOPMENT OF A CHILDREN'S HOSPICE PERINATAL SERVICE TO IMPROVE PERINATAL PALLIATIVE CARE - 10 YEARS ON

Objectives Perinatal palliative care is an evolving specialty committed to providing care for fetuses and babies with a life limiting condition diagnosed in the antenatal or neonatal period. It also includes supporting the parents and extended…

INTRODUCTION OF A PERINATAL PALLIATIVE CLINICAL NURSE SPECIALIST ROLE ENHANCING PARTNERSHIP WORKING BETWEEN PALLIATIVE CARE AND PERINATAL SERVICES-ONE YEAR ON

Objectives Support such as referral to perinatal palliative care and access to hospice services may promote well-being of families of babies diagnosed with life-limiting conditions.1 2 A children's hospice-based perinatal palliative clinical nurse…

Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review

Background: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a…

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…

The Alluring, Enduring, and Troubling Concept of a "Good Death" in Pediatric Palliative Care

Outcomes: 1. Using a critical historical approach, participants will evaluate why, how, and for/with who the "good death" concept emerged and how it has persisted over time. 2. The interprofessional authorship team will illustrate and deconstruct the…

Rights of the Dying Child: The Nurses' Perception

Aim: The Charter of the Rights of the Dying Child was formulated as a professional guide for caring the child in the final stages. The study examines the nurses' degree of agreement with the Charter's principles and their perception of the…

Collaboration: How does it work according to therapists and parents of young children? A systematic review

Background: Collaboration between therapists and parents of children with developmental disabilities is a key element of family-centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review…

Tags: 2024, April List 2024, Awareness, Bloemen M, Child, Child Parent Relation, Child: Care, Health and Development, de Groot A, Disabled child, Gerrits E, Human, Ketelaar M, Klatte IS, Only Child, Palliative Therapy, paramedical personnel, Preschool Child

Pediatric Cancer and Palliative Care in Conflict Affected Area

Background/aims: Turkey has a population fo 85 million and also hosts the larger number of refugees with 3,7 million mainly from Syrian. Globocan 2020 data estimates 233,000 new cancer cases and 126,000 deaths due to cancer. By the end of the 90s,…

Libyan cancer patients at King Hussein Cancer Center for more than a decade, the current situation, and a future vision

BACKGROUND: Since 2011, the Libyan civil war crisis had affected all dimensions of livelihood including cancer care. This has resulted in a steady incline in the number of Libyan patients with cancer seeking oncologic care and management in Tunisia,…

Tags: 2022, 2023 SE5 - Low Resource Setting, Al-Ani A, Al-Hussaini M, Awareness, breast, Erashdi M, Frontiers in Oncology, gastrointestinal tract, hematolymphoid, King Hussein Cancer Center, Libyan cancer patients, Mansour A, screening programs

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…

Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment

Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus…

The Pediatric Serious Illness Conversation Program: Understanding challenges and experiences for clinicians after advance care planning training

OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges…

Local Paediatric Death Data for Barnet 2015- 2021: Which Children are Potentially Eligible for Hospice Care?

Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at…

Challenges in Establishing Optimal Pediatric Palliative Care at the University Hospital in Slovenia

Abstract
The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early…

Patient Involvement in RSV Research: Towards Patients Setting the Research Agenda

Respiratory syncytial virus (RSV) causes a substantial disease burden among children, elderly and immunocompromised adults. Recognition of patient involvement in research is gradually increasing. Most research is being carried out without active…

Tags: 2022, 2023 SE1 - Parent Perspectives, Adult Aged Child Europe Humans Immunocompromised Host Patient Participation, Awareness, Bont LJ, Derksen-Lazet ND, Human, Journal of Infectious Diseases, Parmentier CEJ, patient involvement, patient network, Patient Participation, Patient Perspective, Respiratory Syncytial Virus, Respiratory Syncytial Virus Infections/prevention & control, Wildenbeest JG

Introduction of triggers for palliative care consultation improve utilization and and satisfaction within a level 4 NICU

The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those…

Tags: 2018, April 2020 List, Awareness, conference abstract, Controlled Study, Human, Infant, Leadership, Medical Record Review, Needs Assessment, Nguyen L T, Nurse, Palliative Therapy, Patient Referral, Pediatrics, Physician, Practice Guideline, Satisfaction, Spear M L

Improving the frequency of symptom assessment in pediatric palliative care patients

High quality symptom management for children receiving palliative care relies on accurate and timely documentation of symptoms. Our pediatric palliative and comfort care team (PACT) previously established a mechanism in to assess and document…

Compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care (PC) providers in the U.S

Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and…

Palliative care in an underserved community: Striving and thriving

Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern…

Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study

BACKGROUND: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. AIM: The…

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…

Development of paediatric palliative care in Uganda

Introduction Issues: Until recently, Paediatric Palliative Care in Uganda was ignored, with less than 5% of patients seen at Hospice Africa Uganda being Paediatric patients. African Palliative Care Association (APCA) and Palliative Care Association…

Tags: 2019, Awareness, Child, conference abstract, Developing World 2019 List, government, Human, Igulu Bandese N, Infant Mortality, Organization, Palliative Therapy, postgraduate student, Respect, Supportive Care In Cancer, uganda

Situational analysis and needs assessment regarding the availability and extent of pediatric palliative care services in the philippines

Background: Around 200,000 pediatric clients are diagnosed with cancer each year globally. Majority (84%) of cancer cases are found in developing countries with 20% average survival rate (Ferlay et al, 2012). Two-thirds of pediatric oncology clients…

Parental knowledge and opinions on palliative care for children

Purpose: A pilot study to ascertain awareness and understanding of palliative care among parents of pediatric patients at a single academic medical center.

Use of electronic media in a pediatric palliative aquatics program: Legacy, teaching, research and caveats

Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in…

Tags: 2018, Awareness, Brother, California, Child, conference abstract, Documentation, Face, February 2020 List, Female, Fisher J M, Grief, hearing, Heat, hot water, Human, literature, Male, Memory, motion, Palliative Therapy, Pediatrics, Photography, Physician, Pyatt S, Sound, Teacher, Teaching, touch, videorecording, Voice

Cognitive abilities of patients with Lesch-Nyhan disease

Parents of 42 patients with Lesch-Nyhan disease completed a questionnaire systematizing caregiver observations of the subject's behavior during a wide variety of daily events. Responses were grouped in nine categories reflecting different aspects of…

Tags: 1992, achievement, Adolescent, Adult, alertness, Anderson L T, attempted suicide, Awareness, Behavior Therapy, behavioral, characteristics, Child, Child Preschool, Combined Modality Therapy, Davis S V, Ernst M, Female, Humans, Intellectual Disability/di [Diagnosis], Intellectual Disability/px [Psychology], Intellectual Disability/th [Therapy], Intelligence, Journal of Autism and Developmental Disorders, Language Development Disorders/di [Diagnosis], Language Development Disorders/px [Psychology], Language Development Disorders/th [Therapy], Lesch-Nyhan syndrome, Lesch-Nyhan Syndrome/di [Diagnosis], Lesch-Nyhan Syndrome/px [Psychology], Lesch-Nyhan Syndrome/th [Therapy], Male, Neuropsychological Tests, Self-Injurious Behavior/di [Diagnosis], Self-Injurious Behavior/px [Psychology], Self-Injurious Behavior/th [Therapy], Social Adjustment, Social Behavior, Social Environment, Suicide, thinking, Trajectory

End of life care in children with neurodisability and concurrent palliative care needs: An audit of local Paediatric palliative services

Aims A proportion of children with neurodisability will have life-limiting conditions, whereby their complex continuing needs increase the intricacy and urgency for providing comprehensive supportive care to these families. Equal access to universal…

Parents' experiences of requests for organ and tissue donation: The value of asking

Objective: A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ…

Pediatric End-of-life Simulation: Preparing the Future Nurse to Care for the Needs of the Child and Family

PURPOSE: Preparing a future nurse to respond to the complex and sensitive needs of a child and family during the end-of-life requires more than didactic content in a classroom. During clinical experiences, students may care for children diagnosed…

Family experiences and viewpoints of palliative and supportive care for children with cancer: Can we do better?

Background/Objectives: Palliative and supportive care needs of children with cancer and their families are unique and require special attention. Development of appropriate services sensitive to the needs of families and based on observed evidence has…

Primary palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members

Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering,…

Changing times-PICU and palliative care

Aims & Objectives: To identify patients admitted to PICU who might benefit from palliative care using the Spectrum of Children's Palliative Care Needs. Methods Prospective study between July 2016-December2017. Cases admitted to the PICU were assessed…

The qualitative study on the experience and perception of healthcare professionals in pediatric palliative care

Introduction: In Italy there are approximately 12000 children affected by life-limiting illnesses, which require palliative care services. The national reality, however, confirms the lack of a proper palliative care services network to ensure relief…

Moral distress, trauma and burnout in staff in relation to changes in picu outcomes, challenging cases and media involvement in disagreements about end-of-life care

Background Technological advances have decreased PICU mortality but increased the number of children surviving with disability or technologically-dependent. Death in PICU most frequently follows withdrawal of life-sustaining therapy (LST),…

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