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 115 publications
Qualitative Study of Paediatric Advance Care Planning Through Simulation: How We Did It and the Lessons Learned
Background/aims: Simulation allows clinicians to experience a replication of reality, enabling feasible and ethical study of complex phenomena, such as communication and care around the end of life. There is a paucity of literature describing how to design a s…
The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility
BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a…
The Dutch Multidisciplinary Clinical Practice Guideline for Pediatric Palliative Care
Background and Aims: Pediatric palliative care is concerned with relief of suffering of all children with a life threatening disease and their families in all domains (physical, psychological, social and spiritual). This includes pediatric oncology patients. I…
Transition to adult services for young people suffering from life-limiting neurodevelopmental disabilities: A case series
Due to advances in medical care, a growing number of young people with life-limiting neurodevelopmental disabilities (LLNDDs) are now surviving into adulthood. However, the traditional model of care between pediatrics and adult medicine was fragmented and did …
Views and experiences of young people, their parents/carers and healthcare professionals of the advance care planning process: A summary of the findings from a qualitative study
BACKGROUND: Advance care planning for young people is relatively new in the UK. There is a lack of understanding about the engagement of young people in their own planning process, optimal timing of discussions and the facilitators and barriers to the engageme…
Advance care planning for adolescents with cancer and their parents: study protocol of the BOOST pACP multi-centre randomised controlled trial and process evaluation
BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for…
A novel combined resilience and advance care planning intervention for adolescents and young adults with advanced cancer: A feasibility and acceptability cohort study
BACKGROUND: Few evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the feasibility and acce…
Clinician Identified Barriers and Strategies for Advance Care Planning in Seriously Ill Pediatric Patients
CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing barriers to AC…
Initiation of Paediatric Advance Care Planning: Cross Sectional Survey of Health professionals reported behaviour
BACKGROUND: Globally initiation of paediatric advance care planning discussions is advocated early in the illness trajectory however evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevale…
Intergenerational Decision Making: The Role of Family Relationships in Medical Decision Making
A symposium held at the 42nd annual Society for Medical Decision Making conference on October 26, 2020, focused on intergenerational decision making. The symposium covered existing research and clinical experiences using formal presentations and moderated disc…
Mothers' Support Preferences With Their Chronically Ill Child's Health Care Team
Children living with medical complexities are a growing population in the United States. Supportive pediatric health care team members are arguably the single most important factor in helping mothers manage their child's multifaceted condition. To better under…
Palliative care for children and young people with stage 5 chronic kidney disease
Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliative care pra…
Parents' experiences of initiation of paediatric advance care planning discussions: a qualitative study
Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the …
Participatory development of a modular advance care planning program in pediatric palliative care (MAPPS)
CONTEXT: Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES: Advance care planning (ACP) …
Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effe…
Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provi…
The Road to Readiness: Guiding Families of Children and Adolescents with Serious Illness Toward Meaningful Advance Care Planning Discussions
Seriously ill children, adolescents, and young adults (C-AYA) live with a heavy symptom burden, uncertain or poor prognoses, and evolving expectations of their disease course that require health care professionals (HCPs) to facilitate and maintain meaningful c…
The role of perinatal palliative care following prenatal diagnosis of major, incurable fetal anomalies: a multicentre prospective cohort study
OBJECTIVE: To describe prenatal decision-making processes and birth plans in pregnancies amenable to planning perinatal palliative care. DESIGN: Multicentre prospective observational study. SETTING: Nine Multidisciplinary Centres for Prenatal Diagnosis of the …
Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals
Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professi…
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 …
"Can you tell me why you made that choice?": A qualitative study of the influences on treatment decisions in advance care planning among adolescents and young adults undergoing bone marrow transplant
BACKGROUND: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature.
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Differences in perspectives of pediatricians on advance care planning: a cross-sectional survey
BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due…
Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit
AIM: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). METHODS: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paedi…
Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review
BACKGROUND: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often avoid or d…