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 51–75 of 236 publications
Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitati…
Employment and leave while parenting children with medical complexity.
INTRODUCTION: Children with medical complexity (CMC) require frequent medical care and are at risk of recurrent hospitalizations. The Family Medical Leave Act (FMLA) allows some workers to take unpaid leave from work to care for family members. This study exam…
Existential experiences and perceptions of death among children with terminal cancer: An interpretative qualitative study
BACKGROUND: Exploring the experience and understanding of death in children with terminal cancer is important to provide them with appropriate care. However, most studies have focused on the perspectives of parents and healthcare professionals, and few have fo…
External second opinions: building trust between health professionals and families
In medicine, external second opinions are frequently sought to inform decisions around a patient's proposed course of treatment. However, they are also sought in more challenging circumstances such as when disagreement arises between the healthcare team and th…
Fatal fetal anomaly: Experiences of women and their partners
OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland., METHODS: A qualitative study using in-depth semi-structured inte…
Fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options: A qualitative systematic review
AIM: To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions). DESIGN: Systematic review …
Grieving Parents' Meaning-Making Narration in Relation to Value Orientations: A Cross-Cultural Study
This study investigated the association between prolonged grief (PG) severity and meaning-making narration in a cross-cultural context, and specifically aimed to illustrate the role of value orientation in shaping the grieving process. 30 Chinese and 22 Swiss …
How do children’s nurses working in hospices manage emotional labour and professional integrity in long-term relationships with parents?
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care have been re…
Impact of compounded drugs on the caregivers' burden of home therapy management in pediatric palliative care: A descriptive study
BACKGROUND: Children with medical complexity need complex assistance, that considerably affects caregivers' quality of life. They often need multiple medications, with a consequent relevant risk of errors or poor compliance. Galenic (or compounded) drugs are b…
Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol
INTRODUCTION: Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for PPC was deve…
Including Goals of Care in Treatment Decisions —Meeting Them Where They Are Involves Moving.
Asking about the guiding goal of care (GOC) offers health care professionals a perspective on how an individual patient or a family prioritizes health care decisions and is an essential component of shared-decision making. Listening to the patient and family r…
“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents
Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years …
Parental knowledge and views regarding palliative care for children with cancer in Greece
Introduction: Palliative care (PC) refers to interventions aimed to improve the quality of life (QoL) of children and their families by the prevention and relief of suffering. The purpose of this study was to explore the knowledge and views of parents of child…
Parental perspectives on the clinician's approach to serious illness communication: A qualitative study
OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was used, employ…
Parents' hope in perinatal and neonatal palliative care: a scoping review
Background: The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, surviv…
Pediatric Goals of Care Communication: A Socioecological Model to Guide Conversations
The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics (ie, quality …
Protective and risk factors in the grieving process among cancer-bereaved
This Norwegian nationwide study explored cancer-bereaved parents'
Shared decision-making in pediatric palliative care
Shared decision-making (SDM) with parents and adolescents is normative in pediatric practice in North America. In this article we discuss how it is applicable to the practice of pediatric palliative care (PPC). As PPC itself is exemplary of patient-and-family-…
Social support and prolonged grief disorder symptoms in parents who lost their only child from urban and rural China
Objective: The one-child policy has existed in China for more than 30 years. It brought benefits to the country's economic development and reduced the magnitude of the population within a short period. However, it has led to the emergence of a significant numb…
The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers
BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based…
The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study
BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for chi…
The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life
Purpose Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL and grief.…