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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.

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Showing 226–236 of 236 publications

"It scares me to know that we might not have been there!": a qualitative study into the experiences of parents of seriously ill children participating in ethical case discussions
Forde R, Linja T · BMC Med Ethics · 2015
BACKGROUND: All hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being…
NorwayCommunicationParents/CaregiversQualitative
The family's experience of the child and/or teenager in palliative care: fluctuating between hope and hopelessness in a world changed by losses
Misko M, dos Santos M, Ichikawa C, de Lima R, Bousso R · Revista Latino-Americana de Enfermagem · 2015 · DOI: 10.1590/0104-1169.0468.2588
The AmericasBrazilParents/CaregiversQualitative
Using Online Health Communication to Manage Chronic Sorrow: Mothers of Children with Rare Diseases Speak
Glenn A · Journal of Pediatric Nursing · 2015 · DOI: 10.1016/j.pedn.2014.09.013
The AmericasUnited States of AmericaCommunicationParents/CaregiversPsychosocial CareRare DiseasesTechnologyQualitative
What information do parents need when facing end-of-life decisions for their child? A meta-synthesis of parental feedback
Xafis V, Wilkinson D, Sullivan J · BMC palliative care · 2015 · DOI: 10.1186/s12904-015-0024-0
GlobalDecision-makingEnd of Life CareParents/CaregiversReview/Synthesis
Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences
Whittingham K, Wee D, Sanders M, Boyd R · Disability and Rehabilitation · 2013 · DOI: 10.3109/09638288.2012.737081
Western PacificAustraliaNeurologyParents/CaregiversQualitative
A pilot study of the effectiveness of home teleconsultations in paediatric palliative care
Bradford N, Young J, Armfield N, Bensink M, Pedersen L, Herbert A, Smith A · Journal of Telemedicine & Telecare · 2012
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…
Western PacificAustraliaCare ModelsCommunityParents/CaregiversTechnologyIntervention EvaluationQuantitative
Prolonged Grief, Autobiographical Memory, and Its Interaction With Value Orientations in China and Switzerland
Xiu D, Maercker A, Yang Y, Jia X · Journal of Cross Cultural Psychology · 1369 · DOI: 10.1177/0022022117723529
As a psychopathological function of prolonged grief (PG) disorder, disruptions in autobiographical memory have been shown in bereaved individuals in terms of preferred access of loss-related memory and reduced specificity in non-loss-related memory. The presen…
ChinaSwitzerlandParents/Caregivers
Approaches to end-of-life discussions with parents of a profoundly compromised newborn
Paris J, Pai V, Cummings B, Batten J, Benitz W · Journal of Perinatology · 1078 · DOI: 10.1038/jp.2017.77
The AmericasUnited States of AmericaCommunicationEnd of Life CareParents/CaregiversPeri/neonatal palliative care
Problems and hopes perceived by mothers, fathers and physicians of children receiving palliative care
Hill D, Miller V, Hexem K, Carroll K, Faerber J, Kang T, Feudtner C · Health expectations : an international journal of public participation in health care and health policy · 1052 · DOI: 10.1111/hex.12078
The AmericasUnited States of AmericaDecision-makingParents/CaregiversQuantitative
Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review
Nicholas Dionne-Odom J, Hooker S, Bekelman D, Ejem D, McGhan G, Kitko L, Str�mberg A, Wells R, Astin M, Metin Z, Mancarella G, Pamboukian S, Evangelista L, Buck H, Bakitas M, Hooker S, Metin Z, Pamboukian S, Buck H · Heart Failure Reviews · DOI: 10.1007/s10741-017-9597-4
Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to…
GlobalCardiologyParents/CaregiversReview/Synthesis
A Review of Parental Bereavement Interventions: Implications for Clinical
Dias N, Floyd A, Ramkumar R, Horvick S, Haberstroh A, Hendricks-Ferguson V, Fasolino T · Journal of Hospice & Palliative Nursing · DOI: 10.1097/njh.0000000000001016
The untimely death of a child is an incredibly traumatic experience for parents and their loved ones. It uproots every aspect of their life, leading the bereaved parents to be far more likely to have poorer physical and mental health outcomes. This traumatic f…
Grief & bereavementParents/CaregiversImplementation scienceQualitative
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