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 126–150 of 236 publications
Parents' experiences of care offered after stillbirth: An international online survey of high and middle-income countries
BACKGROUND: Stillbirth, the death of a baby before birth, is associated with significant psychological and social consequences that can be mitigated by respectful and supportive bereavement care. The absence of high-level evidence to support the broad scope of…
Pediatric palliative care parents' distress, financial difficulty, and child symptoms
CONTEXT: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and…
Perceptions of the parents of deceased children and of healthcare providers about end-of-life communication and breaking bad news at a tertiary care public hospital in India: A qualitative exploratory study
BACKGROUND: Parents of dying children face unique challenge and expect compassionate support from health care providers (HCPs). This study explored the experiences of the parents and HCPs about the end-of-life care and breaking bad news and related positive an…
Perinatal palliative care: a dedicated care pathway
OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and E…
Perinatal Palliative Care: Cultural, Spiritual, and Religious Considerations for Parents-What Clinicians Need to Know
For perinatal palliative care (PPC) to be truly holistic, it is imperative that clinicians are conversant in the cultural, spiritual and religious needs of parents. That cultural, spiritual and religious needs for parents should be sensitively attended to are …
'Starting out in haziness': Parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition in Ireland
PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data fro…
The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions
BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. Ho…
The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review
CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical health of paren…
Understanding the Bereavement Process: Voices of Bereaved Parents
Analysis of in-depth qualitative interviews with 20 bereaved parents and 11 service providers revealed a more holistic conceptualization of the bereavement process for parents who have lost a child. Holistic ?states? included: ?helplessness prior to the death,…
'A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care
Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains subopt…
An evaluation of By My Side: Peer support in written form is acceptable and useful for parents bereaved by childhood cancer
CONTEXT: Cancer is the leading cause of non-accidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides wr…
A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support Intervention
OBJECTIVES: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We compared pa…
Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity
ImportanceAdvance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing …
Bereaved Parents, Hope, and Realism
The article presents a discussion between bereaved parents on the Quality of Life Steering Council at a large academic pediatric cancer center and interdisciplinary pediatric palliative care clinicians about the coexistence of hope and realism. Topics covered …
Caregiver-Child Discrepancies in Reports of Child Emotional Symptoms in Pediatric Chronic Pain
OBJECTIVE: Pediatric chronic pain evaluation includes self-reports and/or caregiver proxy-reports across biopsychosocial domains. Limited data exist on the effects of caregiver-child discrepancies in pediatric pain assessment. In children with chronic pain, we…
Communication between neonatologists and parents when prognosis is uncertain
OBJECTIVE: When an infant's prognosis is uncertain, communication between neonatologists and parents surrounding goals of care and decision-making can be challenging. This qualitative study explored communication between neonatologists and parents to discover …
Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting condition
Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for help with…
Concerns of Parents with Children Receiving Home-Based Pediatric Palliative Care
CONTEXT: Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious…
Consulting with a folk deity before making decisions: spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction
Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with e…
COVID-19 Pandemic Restrictions and the Use of Technology for Pediatric Palliative Care in the Acute Care Setting
The COVID-19 pandemic has caused health care facilities to restrict visitors for patients in all care settings. Most pediatric care facilities have restricted visitation to one parent at a time, unfortunately even if the child is in critical condition or is te…
Differing needs of mothers and fathers during their child's end-of-life care: secondary analysis of the "Paediatric end-of-life care needs" (PELICAN) study
BACKGROUND: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during their chi…
End-of-life decisions in neonatal care: a conversation analytical study
OBJECTIVE: To understand the dynamics of conversations between neonatologists and parents concerning limitation of life-sustaining treatments. DESIGN: Formal conversations were recorded, transcribed and analysed according to the conventions and methods of conv…
Experiences and needs of parents of palliative paediatric oncology patients: A meta-synthesis
INTRODUCTION: Despite palliative care being offered to paediatric cancer patients, it has limited utilisation and often excludes parental support. Therefore, this review aims to consolidate evidence regarding experiences and needs of parents of end-of-life pal…
Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families rece…