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 26–50 of 236 publications
Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers
Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing.
Aim:…
Development and Feasibility Evaluation of a Family-Centred Neonatal End-of-Life Care Protocol
AIM: To develop a family-centred end-of-life care protocol and evaluate its feasibility. DESIGN: The draft protocol was created by integrating literature review results and existing protocols and interviewing bereaved parents. A Delphi study and an experts' re…
Exploring Parents' Experiences and Needs During Disclosure of a Cerebral Palsy Diagnosis of Their Young Child: A Scoping Review
BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent and the chi…
Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research
BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in health re…
Family characteristics and childcare patterns associated with early social functioning in cancer-bereaved parents
BACKGROUND: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have …
Health anxiety by proxy - through the eyes of the parents
Abstract
Health anxiety by proxy is a newly described phenomenon where parents worry excessively that their child suffers from a serious illness. In a former study, six parents with distressing worries about their child's health were interviewed to develop the…
Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review
Background: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a long-term change l…
Impact of disability-based discrimination in healthcare on parents of children with medical complexity.
AIM: To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC)., METHOD: In this qualitative study, we conducted in-depth, semi-structured interviews with the parents of CMC. Da…
It's about living a normal life: parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study
BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim o…
'Managing an unexpected life - a caregiver's career': Parents' experience of caring for their child with a non-malignant life-limiting condition
Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper explores th…
'Of course you crash' Parenting a young child with neurodevelopmental difficulties.
BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of neurodevelopmental dis…
Parental Perceptions of the Impact of a Child’s Complex Chronic Condition: A Validation Study of the Impact on Family Scale
The diagnosis of a child’s complex chronic illness may impact family relationships and cohesion. The Impact on Family Scale (IFS) is an instrument used to assess the parental perception of the effects of children’s chronic illness on family life. With a sample…
Parent perspectives on education to support hospital discharge for children with invasive mechanical ventilation.
BACKGROUND: Children with invasive mechanical ventilation (IMV) often live at home, but for safety, parents must be prepared to assume primary responsibility for all aspects of their child's medically complex care. Prior studies have described discharge educat…
Parents' descriptions of labouring with an antepartum fetal death: Findings from the Birthing in Grief study
Abstract
Background: Evidence to guide intrapartum care when an unborn baby has died is limited.
Aims: To explore parents' experiences of care during labour of an antepartum stillbirth.
Materials and methods: Semi-structured interviews with 18 bereaved paren…
Parents, Grandparents and Siblings: A Pilot Psychological Intervention Study in Pediatric Palliative Care
Portugal has approximately 8,000 children with life-limiting conditions. A need to psychological support has been identified, so an innovative online intervention study for families was developed. The aim is to explore potential effects of three intervention p…
Parents providing palliative care for children with cancer
Parents of children with cancer provide paediatric palliative care (PPC). However, the activities they perform remain underexplored, especially in low- and middle-income countries (LMICs) where the care heavily relies on family involvement. The aim of this stu…
Professional bereavement photography for perinatal loss: A mixed-methods study
Abstract
This study addresses research gaps regarding the impact of professional bereavement photography for perinatal loss. Utilizing a mixed-methods research design, 504 parents completed an online survey measuring their attitudes toward bereavement photogra…
Psychosocial factors affecting the quality of life of parents who have children with home mechanical ventilation
INTRODUCTION: Most children with medical complexity have to live with home mechanical ventilation (HMV). Undertaking the care of a child with HMV creates a psychosocial burden on parents. This study investigated the impact of selected potential determinants on…
"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition
BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves…
A Systematic Review of Educational Interventions to Equip Health and Social Care Professionals to Promote End-of-Life Supportive Care when a Parent with Dependent Children is Dying with Cancer
OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for parents dying…
Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home
The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely il…
Consulting parents bereaved by childhood cancer: A qualitative study to
Twelve Australian parents bereaved by childhood cancer were interviewed