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 101–125 of 236 publications
A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois
BACKGROUND: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. OBJECTIVE: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care …
A quest for meaning: A qualitative exploration among children with advanced cancer and their parents
OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before…
Care practices of specialized outpatient pediatric palliative care teams in collaboration with parents: Results of participatory observations
BACKGROUND: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary…
Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness
Objectives: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach. Study design: We first convened an expert panel of multidisciplina…
Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care
Background: Pediatric palliative cares involve the whole family, along with the interdisciplinary pediatric palliative care (PPC) team. The commitment of the PPC team and the engagement of the family at different levels can play a key role in advancing a bette…
Focuses and trends of the studies on pediatric palliative care:A bibliometric analysis from 2004 to 2018
Objectives: To investigate the focuses and trends of the studies on pediatric palliative care (PPC) and provide directions for future research. Method(s): Relevant papers about PPC published from 2004 to 2018 were analyzed using bibliometric analysis methods, …
From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically
Background: Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's unique nee…
Grieving the loss of a child in times of COVID-19
Given the massive influences of COVID-19 restrictions on people in nearly all nations, we conducted an in-depth qualitative study of 15 Belgian parents who had lost a child prior to the pandemic in order to understand its impact on their ongoing bereavement. A…
Healthcare professionals' experiences of the barriers and facilitators to paediatric pain management in the community at end-of-life: A qualitative interview study
CONTEXTS: Inadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited. OBJECTIVES: To explore the barriers and facilitators to paediatric community-based pain managemen…
Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their paren…
Implementing music therapy in a Norwegian neonatal intensive care unit
BACKGROUND: Neonatal intensive care unit (NICU) music therapy is an emerging discipline. There is a growing evidence base supporting its use, with an emphasis on the immediate and short-term positive effects on infants' physiological responses and parents' exp…
Keeping Hope Possible Toolkit: The Development and Evaluation of a Psychosocial Intervention for Parents of Infants, Children and Adolescents with Life Limiting and Life Threatening Illnesses
BACKGROUND: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children's care becomes the central focus of family life. Inadequate support for parents is detrimental to thei…
Lessons Learned in Implementing Youth and Parent Participatory Action Research in a School-Based Intervention
BACKGROUND: Participatory action research (PAR) empowers youth and parent stakeholders to address school connectedness and school environment inequities to improve educational social determinants of health. OBJECTIVES: To identify lessons learned when implemen…
Living through liminality? Situating the transitional experience of parents of children with mucopolysaccharidoses
BACKGROUND: Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in subsequent …
Nursing interventions for perinatal bereavement care in neonatal intensive care units: A scoping review
BACKGROUND: Despite technological advances and specialist training of neonatal teams, perinatal deaths still occur. Such events are traumatic experiences for the parents and increase the risk of pathological grieving. Nursing is one of the main sources of supp…
Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding
INTRODUCTION: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children. OBJECTIVE: To explo…
Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review
BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support is key to e…
Parental Decision-Making for Children With Medical Complexity: An Integrated Literature Review
CONTEXT: Children with medical complexity (CMC) have multiple significant chronic health conditions that result in functional limitations and high health care utilization. The population of CMC is increasing and parent decision-making for this population is nu…
Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries
OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on self-repo…
Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review
The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review …
Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU
CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved …
Parents’ advice to other parents of children with spinal muscular atrophy: Two nationwide follow-ups
Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of effective t…
Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children with Severe Neurological Impairment During Decision-Making
CONTEXT: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care. OBJECTIVE: …
Parents as Advocates for Pediatric Palliative Care
Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the m…
Parents’ experiences during and after their child’s stay in the paediatric intensive care unit – A qualitative interview study
Background
Having a child admitted to the paediatric intensive care unit (PICU) is often an emotional and stressful experience for parents.
Aim
The aim of the study was to explore parents’ experiences during and after their child’s hospitalization in the PICU …