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 1001–1025 of 4332 publications
Managing CHD in Tertiary NICU in Collaboration with a Cardiothoracic Center
Increasingly non-cardiac tertiary neonatal intensive care units (NCTNs) manage newborns with CHD prior to planned transfer to specialist cardiac surgical centres (SCSC). It improves patient flow in SCSCs, enables families to be nearer home, and improves psycho…
Mapping Surgical Intervention Trajectories in Seriously Ill Children Receiving Palliative Care
BACKGROUND/PURPOSE: Despite the prevalence of surgical intervention in seriously ill children, data is scarce regarding interventions performed based on type of serious illness. We therefore sought to evaluate the surgical interventions performed from the time…
Meaningful Display of Legacy Items Among Families Experiencing a Perinatal, Neonatal, or Infant Death
Outcomes: 1. Discuss how families use perinatal palliative legacy items after they return to the community. 2. Understand how perinatal palliative legacy items can affect deceased infant identity in the family. Key Message: Current literature does not address …
Meaning-Making Among Parents of Children With Severe Neurologic Impairment in the PICU
BACKGROUND AND OBJECTIVES: Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time of their ch…
Medication Management Through Collaborative Practice for Children With Medical Complexity: A Prospective Case Series
OBJECTIVE Care coordination for children and youth with special health care needs and medical complexity (CYSHCN-CMC), especially medication management, is difficult for providers, parents/caregivers, and patients. This report describes the creation of a clini…
Meta-synthesis of ethnic minority families' experiences of children's palliative care across developed countries
OBJECTIVES: Meeting the needs of people accessing healthcare from ethnic minority (EM) groups is of great importance. An insight into their experience is needed to improve healthcare providers' ability to align their support with the perspectives and needs of …
Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer
OBJECTIVES: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associate…
Monitoring of physiologic features and treatment aspects of children on home invasive mechanical ventilation
Pediatric home invasive mechanical ventilation patients are a small but resource-intensive cohort, requiring close monitoring and multidisciplinary care. Patients are often dependent on their ventilator for life support, with any significant complications such…
Moral Distress and Pediatric Palliative Care
Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional association's) …
Mortality following admission to the paediatric intensive care unit: A Swedish longitudinal cohort study
Aim: This study aimed to compare outcomes post-admission to a Swedish paediatric intensive care unit (PICU) in children with complex chronic conditions (CCC) and without CCC. Methods: In this observational registry-based study, consecutive admissions to the As…
Mortality in the neonatal intensive care setting: Do benchmarks tell the whole story?
AIM: Australian neonatal mortality data are collected and shared within collaborative networks. Individual unit outcomes are benchmarked between units and presented in quarterly or yearly reports. Low mortality is commonly interpreted as optimal performance. H…
Mothering a Child With Complexity and Rarity: A Narrative Inquiry Exploring Prader-Willi Syndrome.
Daily experiences of mothers caring for children with Prader-Willi syndrome (PWS) are largely unknown and unvoiced. Knowledge of PWS has generally focused on pathology of the disorder. This emphasis overlooks the challenging moments of everyday life caring for…
Musculoskeletal injections for palliative treatment of neuromuscular hip dysplasia patients: how I do it
This review describes our institution's standardized technique as well as potential pitfalls for therapeutic steroid injections in children with symptomatic neuromuscular hip dysplasia. Symptomatic, painful neuromuscular hip dysplasia can dramatically affect q…
“My child is my job now” – Care, work and careers of mothers with disabled children in the Norwegian welfare state
In this article, we investigate how mothers of disabled children in Norway experience the work–family conflict and its impact on their careers, highlighting the role of provision of health and welfare services. We use a qualitative multiple case study of 11 mo…
'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition
BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each i…
National characteristics of emergency care for children with neurologic complex chronic conditions
Abstract
Introduction: Most pediatric emergency care occurs in general emergency departments (GED), where less pediatric experience and lower pediatric emergency readiness may compromise care. Medically vulnerable pediatric patients, such as those with chronic…
Navigating the Hidden Curriculum: Reflections from Graduates of a Multidisciplinary Postgraduate Diploma in Pediatric Palliative Care
Discovering some of the impact of the hidden curriculum (HC) while doing a postgraduate diploma in pediatric palliative care (PPC) in South Africa (SA), six graduates reflected on their formal and informal learning. To navigate the HC the transformative learni…
Navigating the shadows: medical professionals' values and perspectives on end-of-life care within pediatric intensive care units in Croatia
Background and aim: This study explores healthcare professionals' perspectives on end-of-life care in pediatric intensive care units (ICUs) in Croatia, aiming to illuminate their experiences with such practices, underlying attitudes, and major decision-making …
Navigating the Unique Challenges of Caregiving for Children with Rare Diseases: Are the Care Experiences of All Caregivers the Same? A Focus on Life-Limiting Rare Diseases
Background: Caregiving experiences in rare diseases (RDs) vary based on factors such as specific clinical entity, disease severity, the child's age, and available support and resources, leading to challenges that significantly impact caregivers' lives. This st…
'New worlds open up': A qualitative study on Wonder Lab practices in Dutch paediatric palliative care with parents, healthcare professionals, and students
Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each other's fr…
Non-invasive respiratory support in children and young adults with complex medical conditions in pediatric palliative care
Objective: Dyspnoea and sleep-disordered breathing (SDB) are common in children with life-limiting conditions but studies on treatment with non-invasive ventilation (NIV) or continuous positive airway pressure (CPAP) are scarce. The aim of the study was to des…
Not Just Small Adults: The Birth and Early Years of a Pediatric Hospice Program
Outcomes: 1. Participants will be able to describe the need for dedicated pediatric hospice support as well as the differences in care needs of children versus adults. 2. Participants will be able to identify at least three tangible actions to promote delivery…
Nurses' beliefs in the care of newborns at the end of life in the neonatal intensive care unit
Objective: To describe nurses' beliefs and attitudes related to care during the end-of-life process and death in a neonatal intensive care unit.
Method: Descriptive and qualitative study with nurses working in a neonatal intensive care unit who experienced ca…
Nurses' experiences of providing palliative care for children with life-limiting conditions
BACKGROUND: Paediatric palliative care (PPC) has evolved in response to the increased prevalence of children who have been diagnosed with life-limiting conditions. Nursing care is a fundamental aspect of PPC and understanding nurses' experiences is imperative …
Nurses' knowledge of paediatric palliative care in a children's hospital
BACKGROUND: Effective training of health professionals is essential to end-of-life care. AIMS: To explore the level of knowledge on paediatric palliative care (PPC) of nurses in a children's monographic hospital.
METHOD(S): Cross-sectional observational analyt…