Epidemiology of death in paediatric intensive care units (PICUS) in a developing country
cause of death; decision making; organ donor; major clinical study; artificial ventilation; life sustaining treatment; mortality rate; pediatric intensive care unit; prospective study; conference abstract; human; child; female; male; controlled study; palliative therapy; total quality management; resuscitation; length of stay; drug withdrawal; brain death; developing country; inotropic agent; liver failure; secondary analysis
Zainal Abidin AS; Lum LC; Gan CS; Tang SF; Chuah S L; Teh K H; Jalil R; Ho AMM; Isa MR
Pediatric Critical Care Medicine
2018
<a href="http://doi.org/10.1097/01.pcc.0000537866.22348.8a" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537866.22348.8a</a>
Parents' experiences of requests for organ and tissue donation: The value of asking
article; child; female; human; male; palliative therapy; retrospective study; qualitative research; awareness; clinical article; coping behavior; coronary care unit; fear; hospice; multicenter study; neonatal intensive care unit; organ donation; organ donor; palliative care; parents; pediatric intensive care unit; terminal care
Objective: A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents' and healthcare professionals' (HCPs) experiences. Design(s): A retrospective qualitative study. Setting(s): Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children's hospice. Patient(s): Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs. Intervention(s): None. Main Outcomes and Measures: Parents' and HCPs' views and experiences of discussions about OTD. Result(s): 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\textbackslash and parents' assumptions about health of organs (when donation is not discussed). Conclusion(s): The findings add new knowledge about parents' assumptions about the value of their child's organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised. Copyright © Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.
Darlington A S; Long-Sutehall T; Randall D; Wakefield C; Robinson V; Brierley J
Archives of Disease in Childhood.
2019
<a href="http://doi.org/10.1136/archdischild-2018-316382" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-316382</a>
Religious and cultural challenges in paediatrics palliative care: A review of literature
cultural anthropology; palliative therapy; pediatrics; religion; autopsy; caregiver; coping behavior; data base; decision making; human; interpersonal communication; life; organ donor; Palliative Care; review; software; systematic review; terminal care; terminally ill patient
Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children even more challenging due to the various, and at times, contrasting expectations from the families and the healthcare providers. Objective(s): This article aimed to discover the challenges of paediatric palliative care delivery in the context of culture and religion. Method(s): A systematic review was conducted through an online search of three databases for free open access articles and book chapters published between 2000 and 2018: Medline, Scopus and Google Scholar. Search key terms included: culture, custom, spiritual, ethnic, or religion [AND] end-of-life, palliative care, cancer, hospice, [AND] children or paediatrics. Result(s): Thirty-two (32) articles met the eligibility criteria. Out of these, five distinct themes emerged on the basis of implications for paediatrics palliative care. These include the (i) role of religion and culture in decision-making, (ii) the involvement of clerics towards the end-of-life, (iii) specific communication with the children and their caregivers about imminent death, (iv) the acceptance of autopsy and organ donation, and (v) spiritual coping strategies. Discussion(s): This review paper provided an insight into the impact of religion and topographical culture to the paediatrics end-of-life care. Cultural and religious traditions are dynamic and cannot be generalized to all families, hence a guided framework is recommended for clinicians working in diverse ethnic population in dealing with culturally sensitive, end-of-life care.Copyright © 2019 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
Khalid K; Ku Md Saad S; Abd Ghani NA; Mohamed Abdul Kadher AN
Journal of Pediatric Hematology/Oncology
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.phoj.2019.11.001</a>
Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Infant, Newborn; England; article; human; newborn; newborn death; terminal care; documentation; human tissue; newborn intensive care; patient referral; neonatal intensive care unit; surgery; infant; conversation; nurse; cause of death; eligibility; transplantation; brain injury; cooling; organ donor
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kingdom. Aim: The aim of this audit was to retrospectively determine potential eligibility for neonatal tissue and/or organ donation referral in infants who died in a single UK tertiary-level neonatal unit between 2012 and 2021. Cause of death and documentation of any discussions held regarding referral for donation were also explored. Study design: An audit was undertaken to identify all neonatal deaths at a single tertiary-level NICU in London from 2012-2021. Infants who retrospectively could have been referred as potential tissue and/or organ donors were identified using current NHS Blood and Transplant inclusion and exclusion criteria. Results and conclusion: A significant missed potential for neonatal tissue and/or organ donation referrals was identified, which is likely not just limited to the unit audited. Causes of death were as expected for a tertiary level neonatal unit and centre for therapeutic cooling of babies born with hypoxic perinatal brain injuries. Only one documented conversation was found regarding neonatal donation. Relevance to clinical practice: To enable conversations regarding neonatal donation to become a routine part of end-of-life care discussions with families as appropriate, good links between neonatal healthcare professionals and Specialist Nurses in Organ Donation need to be established. This will facilitate the referral of all suitable neonates as potential donors and ensure that neonatal staff feel supported to care for babies identified as potential donors.
Ali F; Chant K; Scales A; Sellwood M; Gallagher K
Nursing in Critical Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener">10.1111/nicc.12943</a>
Organ donation after euthanasia in children: Belgian and Dutch perspectives
Child; child; article; human; palliative therapy; Only Child; ethics; intensive care; euthanasia; organ donor; pediatric surgery
Organ donation after euthanasia has been performed more than 70 times in Belgium and the Netherlands combined (personal communication, Jan Bollen, 2018). These two countries allow for euthanasia in minors as well, while Luxembourg, Colombia and Canada only allow adults to undergo euthanasia. A Dutch guideline on organ donation after euthanasia focuses on mentally competent adults, with a predominance of neurodegenerative diseases.1 The question arises whether organ donation after euthanasia should be possible in children and adolescents, and what are the legal, medical and ethical conditions for the combined procedure.
Bollen JAM; Ten Hoopen R; Van Der Hoeven MAHBM; Shaw D; Brierley J; Ysebaert D; Van Heurn LWE; Van Mook WNKA
Archives of Disease in Childhood
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2018-315560" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-315560</a>