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 901–925 of 4332 publications
End-of-Life Care for Newborn Infants: A Multicenter Real-Life Prospective Study
Introduction: Most neonatal deaths in industrialized countries follow a process of redirection of care. The objectives of this study were to describe how neonates die in a middle-income country, whether there was redirection of care, and the reason for this de…
End of life care in a level IV outborn neonatal intensive care unit
OBJECTIVE: Describe care surrounding the end of life (EOL) in the neonatal intensive care unit (NICU). STUDY DESIGN: Retrospective chart review of 208 infants who died in a level IV referral-only NICU over 5 years. RESULTS: A goals of care (GOC) conversation w…
Enhancing Quality of Life in Pediatric Palliative Care: Insights, Challenges, and Future Directions—A Systematic Review
Pediatric palliative care (PPC) programs are essential in encompassing not only the affected children but also their family system and the healthcare and educational professionals involved. Despite the field’s significance, there is a notable scarcity in curre…
Epidemiological Assessment of a Pediatric Palliative Care Clinic at a Brazilian Quaternary Hospital: 20 Years of Experience
Background: The pediatric palliative care (PPC) sets up an interdisciplinary approach of chronic complex diseases throughout birth to adolescence. It encompasses countless contrasts in development and diagnosis scopes, which make this area a challenge to nonpe…
Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement
Background: Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are important.
…
Evaluation of a perinatal palliative care program by SWOT analysis
Background: Perinatal Palliative Care (PPC) is individualized medical-nursing care aimed at improving the quality of life of newborns with life-limiting conditions and to support their families. This study draws on the analysis of the experience gained over te…
Evaluation of paediatric palliative care ambulance plans: A retrospective study
Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding…
Evaluation of serum vitamin B12 and D, iron, ferritin, folate, calcium, phosphorus and magnesium levels in children in palliative care clinic: a single-center cross-sectional study
Pediatric palliative care (PPC) patients are at an elevated risk of malnutrition. Nutritional inadequacy can also cause micronutrient deficiencies. These factors can lead to weight loss, stunted growth, and poor quality of life. Despite the prevalence of these…
Everyday Ethics or Deference to Expertise: Experiences of Pediatric Palliative Care Teams with Ethics Consultancy
Background: Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Objective: Describe the extent to which PPC team members serve in pediatr…
Everything But: A Case Series of Strategies to Care for the Pediatric Chronically, Critically Ill Patient and Family
Outcomes: 1. Use strategies to understand family's hopes, wishes and worries for their chronically and often critically ill child and what they perceive to be prolonging life versus prolonging death. 2. Utilize specific language to make recommendations to help…
Examining Emotional and Behavioural Trajectories in Siblings of Children with Life-Threatening Conditions
Abstract Background Healthy siblings of children with life-limiting conditions often experience emotional and behavioral struggles over the course of the ill child’s condition(s). Resources to support these siblings are limited due to the lack of understanding…
Experience of caregivers and healthcare professionals using a telemedicine programme in a paediatric palliative care unit
BACKGROUND: Telemedicine is a means of providing efficient treatment for children with complex chronic conditions and/or subsidiary palliative paediatric care. AIM: To evaluate how satisfied families and healthcare professionals are with a telemedicine program…
Experiences in Coping with Stress-A Qualitative Study of Family Caregivers of Children with Medical Complexity
OBJECTIVE: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. METHODS: We conducted a cross-sectional qualitative study among family caregiv…
Experiences of Fathers in Norway Attending an Online Course on Therapeutic Writing After the Death of a Child
After the unexpected death of a child, bereaved parents require prompt access to helpful support systems. Online therapeutic writing courses can make such support accessible. Because few studies have included bereaved fathers as participants, we explored the e…
Experiences of music therapy in paediatric palliative care from multiple stakeholder perspectives: A systematic review and qualitative evidence synthesis
BACKGROUND: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by ch…
Experiences of Nurses and Midwives Who Support Bereaved Parents During Perinatal Deaths in Ghana: A Descriptive Phenomenological Study
IntroductionGlobally, perinatal death presents a profound challenge for healthcare and healthcare professionals, requiring enormous clinical expertise and mental fortitude. The complexity involved in balancing professionalism, empathy, and the human face pose …
Experiences of nursing students providing end of life care for children and young people: A focus group study
BACKGROUND: End of life care for Children and Young People (CYP) is known to be an emotive area of practice. Previous studies involving qualified nurses have demonstrated that nurses feel they need more end-of-life care education, as well as a platform for sha…
Experiences of pregnancy loss in Israeli first-time expecting fathers: A qualitative study
Abstract
The aim of this study was to explore the experiences of pregnancy loss in first-time expecting fathers. Participants were 14 Jewish Israeli men who experienced pregnancy loss that occurred at least 3 months before their participation and who had no ot…
Experiences with a national team-based learning program for advance care planning in pediatric palliative care
Background: Advance Care Planning (ACP) enables patients and relatives to define and share values, goals and preferences for future medical treatment and care. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT), developed in the Netherlands, is …
Exploring Bereavement in Pediatric Nursing: A Systematic Review
Introduction: The management of parent’s and family’s bereavement, before, during and after the death of a
child is a great challenge for health care professionals (HCPs).
Aim: The purpose of this study was to investigate bereavement in pediatric nursing befor…
Exploring critical factors in pediatric palliative care in Latin America: A scoping review
This scoping review aimed to provide an overview of the current landscape of pediatric palliative care in Latin America, including policies, regulations, available resources, challenges, barriers, and evidence-based recommendations. We conducted a comprehensiv…
Exploring Parent Experiences With Early Palliative Care Practices in the NICU
BACKGROUND: The anxiety and uncertain outcome of an admission of a seriously ill infant to the neonatal intensive care unit (NICU) can cause great stress for parents and contribute to poor mental health outcomes. Early implementation of family-centered palliat…
Exploring Parents' Experiences and Needs During Disclosure of a Cerebral Palsy Diagnosis of Their Young Child: A Scoping Review
BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent and the chi…
Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life
Context: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences.
Objective: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language.…