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 351–375 of 4332 publications
An Interprofessional Approach to Developing Family Psychosocial Support Programs in a Pediatric Oncology Healthcare Setting
Background: The Standards for the Psychosocial Care of Children with Cancer and their Families provide a framework for the delivery of psychosocial care to families experiencing pediatric cancer. Similarly, the Pediatric Psychosocial Preventative Health Model …
A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study
Background: Outcome measurement is pivotal to person-centred assessment, quality improvement and research. Children and young people with life-limiting and -threatening illness have high needs and service use, yet there is a lack of evidence for interventions …
Anxiety, depression, and quality of life of caregivers of palliative care patients with cancer
Introduction: Palliative care has recently gained importance in the context of life-threatening diseases, such as cancer, that affect the mental health of patients and their caregivers. Psychological symptoms, such as anxiety and depression, are the most preva…
A Parent's Perspective on Systemic Gaps in Supporting Complex Pediatric Care at Home
Children with complex medical needs often require substantial medical care, including at home, where family members perform many procedures typically reserved for licensed nurses. This article presents a caregivers' perspective of navigating the healthcare sys…
A preliminary evaluation of a group compassion-focused intervention for individuals affected by perinatal loss
The United Kingdom (UK) National Health Service’s (NHS) long term plan established Maternal Mental Health Services (MMHS) to provide specialist psychological assessment and intervention for perinatal loss, birth trauma, and fear of childbirth. Perinatal loss i…
A Quality Improvement Approach to Perinatal Palliative Care: Using Standardized Criteria and Education to Increase Early NICU Palliative Care Consultation
Background: Perinatal palliative care (PC) provides comprehensive, interdisciplinary, and planned care for infants with life-limiting or chronic critical conditions. Poor utilization of PC services was seen at our Level IV neonatal intensive care unit (NICU), …
A Rapid Review Exploring Overnight Camps for Children with Chronic or Serious Illness as a Palliative Care Intervention for Caregivers
Background: Strong evidence supports the benefits of overnight camp for children with chronic and serious illness, yet little research exists on the role of these camps as a palliative, non-hospice intervention for caregivers. With nearly 25 million children a…
Assessment of Caregiver Burden and Burnout in Pediatric Palliative Care: A Path Toward Improving Children's Well-Being
Pediatric palliative care (PPC) is an evolving field that focuses on supporting children with life-limiting conditions, where the quality of care is vital. This study is a retrospective observational investigation that examines the experiences of caregivers to…
Assisted dying in the UK: please don't ignore the impact on children and young people
"The Leadbeater Terminally Ill Adults (End of Life) Bill, the latest UK bill on assisted dying, passed its second reading in the House of Commons in November 2024 after a short period of intense debate and extensive high-profile media coverage. However, these …
Association of Palliative Care Timing with End-of-Life Quality in Children with Heart Disease
Abstract
Context: Children with heart disease are at risk for early mortality and parents often perceive suffering at end-of-life (EOL). Involvement of pediatric palliative care (PPC) is a proposed quality measure at the EOL in children with cancer, and early …
Associations of Losing a Child With the Couple Relationship, Maternal Mental Health, and the Emotional Development of the Subsequent Baby
The loss of a child can impact maternal mental health and the emotional development of a subsequent baby. Couple relationship can help women to cope with this loss. This study investigates the association among child loss, maternal mental health (including pro…
A structured comparison and reflection on international position statements and professional guidance for the management of periviable infants
Background: Survival rates and clinical approach to periviable infants are rapidly evolving at certain centres, but there remains variation in definition, approach and management of these infants worldwide. This review aims to narratively review and discuss pr…
A Systematic Review of Grief Experiences of Children Who Have Lost a Sibling
Background: Children who lose a sibling often receive inadequate attention, leading to lasting psychological and emotional challenges. Health care providers recognize the importance of comprehensive bereavement support but may lack knowledge for effective deli…
A Unique Approach to Interdisciplinary Programmatic Palliative Care Development: Extending Into the Realm of Pediatric Palliative Oncology
Barriers to pediatric palliative care (PPC) integration in pediatric oncology encompass resource availability, provider attitudes, patient/family hesitancy, and timing. We report on a unique multistep approach for the creation of a pediatric palliative oncolog…
Autonomy in adolescents in palliative care and its biopsychosocial impact: A systematic review
BACKGROUND: Adolescence is a period of significant physical, psychological, and social changes, which can be intensified by the diagnosis of serious or chronic illnesses. This makes promoting autonomy in palliative care particularly challenging. AIM: The prese…
Awakening the Spiritual Identity in Adolescents With Cancer: A Phenomenological Study
Background Awakening the spiritual identity in adolescents with cancer is a phenomenon that has not been fully explored. Nevertheless, empirical research shows that spirituality is associated with positive health outcomes for adolescents with cancer. This find…
Barriers to and Facilitators of Pediatric Palliative Care in Mainland China, Hong Kong, and Taiwan: A Document Analysis
BACKGROUND: Although progress has been made, substantial barriers exist in the development and implementation of pediatric palliative care (PPC) in mainland China, Hong Kong, and Taiwan. Possible explanations include the idea that cultural taboos erect barrier…
'Being a Good Parent' for Seriously Ill Children in Brazil: A Qualitative Semantic Analysis
BACKGROUND: Most studies on 'being a good parent' focus on North American populations, leaving a gap in understanding parents' cultural beliefs and definitions in other regions. Cultural values, societal norms and personal experiences shape these beliefs, infl…
Bereaved Parents as Communication Workshop Facilitators for Clinicians Caring for Seriously Ill Children
Introduction: The Serious Illness Conversation Guide-Pediatrics (SICG-Peds) is a validated tool and training program that increases clinicians’ confidence in leading complex conversations with seriously ill pediatric patients and their families. We initiated a…
Bereaved parents' perspectives of factors influencing decision-making about place of end-of-life care for children with life-limiting, life-threatening conditions: an all-Ireland qualitative study
BACKGROUND: The need for children's palliative care and end-of-life services is increasing. However, there is limited evidence to inform health and social care professionals about parental preferences for place of end-of-life care for their child, or on factor…
Bereaved Parents' Perspectives on Financial Toxicity at End of Life for Children with Cancer: A Qualitative Study
Objective: To explore financial toxicity (FT) experienced by the parents of children with cancer at end-of-life (EOL), including exploring differences by race and ethnicity.
Study design: We performed secondary analysis of semistructured interviews of bereave…
Beyond the Label: How Naming and Framing Impact Pediatric Palliative Care Acceptance
Context: Pediatric palliative care (PPC) underutilization persists despite proven benefits. Some barriers stem from the misconception that PPC is exclusively for end-of-life, causing parental distress and reticence to engage. This study explores the origins of…
Biography Writing in the Pediatric Palliative Care Context: Review and Feasibility Data
Abstract
Background: Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of applying a biog…
Bittersweet encounters. A qualitative exploration of parents’ unexplainable grief experiences after child loss
When a loved one dies, some grievers report experiencing phenomena for which no rational explanation seems to exist. This qualitative study, based on a secondary analysis of interview data, aimed to contribute to a deeper understanding of the value and meaning…
Blended Pediatric/Adult Palliative Care for Young Adult With Autism and Pancreatic Cancer
Pediatric and adult palliative care clinicians can learn valuable lessons from each other.(1-3) However, pediatric and adult teams tend to function separately, and feel unprepared to care for the other population.(4) Many patients across the age spectrum, espe…