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 3026–3050 of 4332 publications
Professional Bereavement Photography in the Setting of Perinatal Loss: A Qualitative Analysis
Perinatal loss, including fetal and infant death, is a devastating experience for parents, resulting in long-term adverse physical and psychosocial outcomes. However, little is known about what services might best support grieving parents. We aimed to understa…
Providing cost-effective and coordinated care for children with medical complexity
Introduction: Many paediatric hospitals are treating increasing numbers of children with medical complexity (CMC), diagnosed with chronic life-limiting illnesses and requiring life-sustaining home medical technology. These medically fragile children and famili…
Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nurses
Background: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.
Aim: To …
Psychometric properties of the Chinese mainland version of the Palliative Care Spiritual Care Competency Scale (PCSCCS-M) in nursing: a cross-sectional study
BACKGROUND: Spiritual care competencies are among the primary professional skills that enable best practices in nursing. Assessing these competencies and identifying those that are insufficient are important tasks. The traditional Chinese version of the Pallia…
Psychosocial factors related with caregiver burden among families of children with chronic conditions
Background: The impact of looking after children who live with complex chronic conditions is a growing public health issue. However, it is unclear whether sociodemographic and psychosocial variables can be used to predict the burden on the caregiver and how th…
Qualitative situational analysis of palliative care for adolescents with cancer and HIV in South Africa: healthcare worker perceptions
OBJECTIVES: The unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to examine palliat…
Racial and Ethnic Differences in Parental Decision-Making Roles in Pediatric Oncology
Background: Prior work in adult oncology suggests minority patients are less involved in decision making than preferred. However, few studies have explored decision-making experiences of minority parents in pediatric oncology. Objective: To determine whether p…
Rapid response physiotherapy service in patients with life limiting conditions
Background Children with chronic illness and life limiting conditions are often more prone to respiratory illnesses due to problems with increased secretions and reduced ability to clear them. The aim of rapid response physiotherapists (RRP) in this patient de…
Reliability and predictive validity of the Standardized Infant NeuroDevelopmental Assessment neurological scale
AIM: To assess reliability and predictive validity of the neurological scale of the Standardized Infant NeuroDevelopmental Assessment (SINDA), a recently developed assessment for infants aged 6 weeks to 12 months. METHOD: To assess reliability, three assessors…
Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research
OBJECTIVE: Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qua…
Resilience as a predictive factor towards a healthy adjustment to grief after the loss of a child to cancer
INTRODUCTION: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common non-acciden…
Retrospective Review of the Use of Transdermal Buprenorphine Patches (Butrans) in a Pediatric Population
Background: Buprenorphine is an opioid medication used for the treatment of moderate to severe pain. In Canada, buprenorphine is not indicated for use in the pediatric population and literature surrounding its use in pediatrics is limited. Our aim was to evalu…
Scoping Review of Memory Making in Bereavement Care for Parents After the Death of a Newborn
OBJECTIVE: To summarize and synthesize extant literature on memory making in bereavement care for parents who experience the death of a newborn and to identify opportunities for future research. DATA SOURCES: We conducted a systematic search of four health-rel…
Scoping review of symptoms in children with rare, progressive, life-threatening disorders
Background Q3 conditions are progressive, metabolic, neurological or chromosomal childhood conditions without a cure. Children with these conditions face an unknown lifespan as well as unstable and uncomfortable symptoms. Clinicians and other healthcare profes…
Sibling Relationships Over the Life Course: Growing Up With a Disability
The research explores sibling relationships, and the ways in which they are shaped over the life course by family members, in families with a lifelong disability. In-depth, semistructured interviews were conducted with 15 family units including a parent, a sib…
Simulation and skills training for pediatric fellows: Improving confidence in high-stakes care at end of life
Background: End-of-life (EOL) care for a child is a high-stakes situation that requires careful planning and practice; there is only one chance to get it right. Additionally, distress is often high in those caring for dying children. Despite the fact that trea…
Simulation-Based Palliative Care Communication for Pediatric Critical Care Fellows
BACKGROUND: Pediatric palliative care (PPC) education is lacking in pediatric critical care medicine (PCCM) fellowships, despite the desire of many program directors and fellows to expand difficult conversation training. Simulation-based training is an experie…
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…
Social media use in adolescents and young adults with serious illnesses: an integrative review
OBJECTIVES: Adolescents and young adults with life-limiting or life-threatening conditions are often socially isolated because of the demands of their illness. Although adolescents and young adults have a noticeable online and social media presence, their moti…
Socioeconomic Status and Health Services Utilization for Children With Complex Chronic Conditions Liable to Receive Nurse-Led Services: A Cross-Sectional Study
AIM: To analyze the use of health services for children with severe chronic diseases, seeking to identify patterns of use according to sociodemographic and clinical conditions, and to identify unmet needs of care coordination that could benefit from nursing ca…
Sowing Across a State: Development and Delivery of a Grassroots Pediatric Palliative Care Nursing Curriculum
BACKGROUND: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services. OBJECTIVES: To develop a pediatric palliativ…
Spiritual assessment and spiritual care offerings as a standard of care in pediatric oncology: A recommendation informed by a systematic review of the literature
Children with cancer and their families experience shifts in spiritual wellness from diagnosis through treatment and survivorship or bereavement. An interdisciplinary team conducted a systematic review of quantitative and qualitative research on spiritual asse…
Spiritual Care: Minimizing the Vulnerability of Parents Whose Children With Cancer Face the End of Life
There is a distinct lack of literature related to the spiritual care of parents whose children with cancer are at the end of life. This has led to a dearth in evidence about how nurses may intervene with spiritual care interventions to best support these vulne…
Spirituality among parents of children with cancer in a Middle Eastern country
PURPOSE: Family caregivers of children with cancer face emotional, psychological, and spiritual challenges coping with their child's illness. For ensuring comprehensive multidisciplinary pediatric care, there is a need to understand and define what spiritualit…
Supportive care in children with spinal muscular atrophy type 1: Results from a french multicentric study
Introduction: This National Hospital Clinical Research Program (PHRC) was conducted in France between 2012 and 2016 to depict palliative practices in spinal muscular atrophy type 1 (SMA-1). New drugs (Nusinersen) have been developed and may modify its natural …