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 4251–4275 of 4332 publications
Resilience and death: the nursing professional in the care of children and adolescents with life-limiting illnesses
The purpose of this article is to analyze the resilience of the nursing staff in providing care for children and adolescents with chronic diseases, including coping with their deaths. The participants of this qualitative research were nursing professionals wor…
Some general considerations of a human-based medicine's palliative approach to the vulnerability of the multiply disabled child before the end of life
Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must be questi…
Who are the children using hospice care?
PURPOSE: The purpose was to examine the characteristics of children who use hospice care.
DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics of 76 chil…
Cultural and religious considerations in pediatric palliative care
OBJECTIVE: A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is e…
Neonatal end-of-life care: A single-center NICU experience in Israel over a decade
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and redirection…
Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH involves dying ad…
Pediatric palliative care-when quality of life becomes the main focus of treatment
Pediatric palliative care (PPC) focuses on children and adolescents with life-limiting diseases. It may be initiated at various points of the disease trajectory, if possible early enough to support living with the best possible quality of life despite a limite…
The Impact of a Child's Special Health Care Needs on Maternal Work Participation during Early Motherhood
Abstract Background Many women temporarily reduce work hours or stop working when caring for small children. However, mothers of children with special health care needs may face particular challenges balancing childrearing responsibilities and employment deman…
The needs of professionals in the palliative care of children and adolescents
UNLABELLED: The main objectives of this qualitative study were to describe the perceptions and needs of pediatric health care professionals (HCPs) taking care of children with palliative care needs and to develop a concept for the first Center of Competence fo…
To explore the neonatal nurses' beliefs and attitudes towards caring for dying neonates in Taiwan
(1) To explore attitudes and beliefs of neonatal nurses toward nursing care for dying neonates; (2) to estimate the influence of neonatal nurses' personal and professional characteristics on their attitudes towards end-of life care for dying infants. A cross-s…
A pilot study of the effectiveness of home teleconsultations in paediatric palliative care
We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families were alloca…
Inclusion of children with disabilities in mainstream child development research
This study investigated whether children with disabilities are excluded from mainstream child development research. Fifteen per cent of 533 articles from Child Development and Developmental Psychology (1996?2010) were randomly selected. The exclusion rate was …
Development and implementation of a bereavement follow-up intervention for grieving fathers: an action research.
AIMS AND OBJECTIVES: The aim is to present the development and implementation of a bereavement follow-up intervention for grieving fathers. The development and implementation process and components of the intervention are presented., BACKGROUND: There is a lac…
Forgoing life support: how the decision is made in European pediatric intensive care units
PURPOSE: To determine how decisions to forgo life support are made in European pediatric intensive care units (PICUs).
METHODS: A multicenter, prospective study, the Eurydice II study, among 45 PICUs: 20 in France, 21 in Northern/Western (N/W) European countri…
Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups
The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) canc…
Perceptions of discrimination among Mexican American families of seriously ill children
This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided the overall…
A comparative cost-minimization analysis of providing paediatric palliative respite care before and after the opening of services at a paediatric hospice
A palliative care service provider may add or decrease overall operational costs to the healthcare system. This study assessed the costs of managing respite care for children with life-limiting illness at the Children's Hospital of Eastern Ontario for the 12-m…
Challenges and coping styles of fathers as primary medical caretakers: a multicultural qualitative study.
Research has focused heavily on mother's experiences of children with life-threatening illnesses. In contrast, fathers' experiences, especially among minorities, are scarcely discussed. This study examined the experiences of 15 fathers as primary medical caret…
Gender imbalance in pediatric palliative care research samples.
We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative care using M…
Psychosocial adjustment in siblings of young people with Duchenne muscular dystrophy
Duchenne muscular dystrophy (DMD) is a progressive, impairing, life-limiting disorder of childhood. Little is known about how siblings adapt to this. The aim of this study is to document psychosocial adjustment in siblings of patients with DMD. Healthy sibling…
End- of- life decisions and minors: do minors have the right to refuse life preserving medical treatment? A comparative study
The principles of the right to informed consent and informed refusal are quite clear for competent adult patients. The right of a competent adult patient to give his informed consent before medical treatment can be started, is a patients' right that is recogni…
Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center
BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed wh…