Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 1–25 of 33 publications
Circle of light education model: Death education for children in end of life care
This study delves into the Circle of Light educational framework, focusing on death education for children receiving end of life care. It highlights the importance of such education in fostering psychological and spiritual well-being and alleviating death-rela…
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 intervention. Key…
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 growth, espe…
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 explored their p…
Pediatric Perspectives on Palliative Care in the Neurocritical Care Unit
Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional overload,…
Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients
OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research invest…
Palliative care for children: methodology for the development of a national clinical practice guideline
Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update…
Pediatric Palliative Care Program Implementation in Low- and Middle-income Countries: A Systematic Review Using a Strengths, Weaknesses, Opportunities and Threats Analysis
Background/aims: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and…
The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes
Background and objectives: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient…
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 of psychos…
Cultivating Gratitude in Bereaved Families: Description of the Impact of the Bereavement Workshop on Families of Deceased Patients in the Pediatric Palliative Care Program
Background and Aims: 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 to paren…
Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's understanding of th…
"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 (Paediatr…
Pediatric and Adult Cardiologists' and Respirologists' Referral Practices to Palliative Care
Context: Children and adults with advanced cardiac or respiratory disease may benefit from specialized palliative care (SPC), but there has been little SPC research in this area. Objective(s): To explore pediatric cardiologists' and respirologists' (pediatric …
Pediatric End of Life Care and Bereavement During COVID- 19: The Experiences of Moral Distress
From the onset of the COVID-19 pandemic, psychosocial oncology providers have experienced various types of moral distress. Challenges include difficulty building rapport with telephone/computer replacing face-to-face connections, lack of clarity around who is …
Racial Disparities in the Provision of Pediatric Psychosocial End-of-Life Services: A Systematic Review
Background: When compared with White patients, racial and ethnic minorities experience greater barriers to quality end-of-life care. Each year, approximately 52,000 children die in the United States, yet little is known about the disparities in pediatric palli…
Advances in pediatric psychooncology
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of patient-reported outcom…
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 in the Phi…
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 become mo…
Integrating palliative care into the care of paediatric patients at a referral hospital in ghana
Background/Objectives: Caring for children with life threatening diseases can be difficult and also it could be compounded by insufficient training and competence in symptom management and communication skills by staff members. This affects the quality of care…
Pediatric palliative care-child life beyond the hospital
Program Goals: Historically Child Life Specialists (CCLS) have done the majority of their work in healthcare settings such as pediatric acute care hospitals and clinics. As children are living longer with chronic diseases, CCLS are using their knowledge and sk…
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