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Food is love - partnering with families to provide nourishment at the end of life

KAYE, Erica C. ; KEGEL, Anna ; WEBER, Madeline ; CARTWRIGHT, Carla ; SPRAKER-PERLMAN, Holly ; ROBINSON, Giles W. ; BAKER, Justin N.
Journal of clinical oncology, 02/04/2020, p. 1-5

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"My life's properly beginning" - young people with a terminally ill parent talk about the future

TURNER, Nicola
Sociology of health and illness, 03/04/2020, p. 1-13

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Decision aids available for parents making end-of-life or palliative care decisions for children - a scoping review: decision aids

MEDEIROS, Christina ; BUCKLEY, Laura ; METCALFE, Kelly ; NARAYANAN, Unni G ; WIDGER, Kimberley
Journal of paediatrics and child health, 12/04/2020, Pagination inconnue

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Trauma to transformation - the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore

DUTTA, Oindrila ; TAN-HO, Geraldine ; CHOO, Ping Ying ; LOW, Xinyi Casuarine ; CHONG, Poh Heng ; NG, Carolyn ; GANAPATHY, Sashikumar ; HO, Andy Hau Yan
BMC palliative care, 2020, vol.19, n°1, p. 1-17

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Tibou et Brindille

WALSCHAERTS, Raf ; SONCK, Ariane ; CLEMENT, Sabien
Alice Jeunesse , 2019 , 58 p.

Palliative care and grief counseling in peri- and neonatology - recommendations from the German PaluTiN group

GARTEN, Lars ; GLOBISCH, Marcel ; VON DER HUDE, Kerstin ; JÄKEL, Karin ; KNOCHEL, Kathrin ; KRONES, Tanja ; NICIN, Tatjana ; OFFERMANN, Franziska ; SCHINDLER, Monika ; SCHNEIDER, Uwe ; SCHUBERT, Beatrix ; STRAHLECK, Thomas ; PALUTIN GROUP
Frontiers in pediatrics, 2020, vol.8, p. 1-11

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Towards advance care planning in pediatrics - a qualitative study on envisioning the future as parents of a seriously ill child

FAHNER, Jurrianne C. ; THOLKING, Thessa W. ; RIETJENS, Judith A. C. ; VAN DER HEIDE, Agnes ; VAN DELDEN, Johannes J. M. ; KARS, Marijke C.
European journal of pediatrics, 19/03/2020, p. 1-8

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Defining a "good death" in the pediatric intensive care unit

BRODEN, Elizabeth G. ; DEATRICK, Janet ; ULRICH, Connie ; CURLEY, Martha A. Q.
American journal of critical care, 01/03/2020, vol.29, n°2, p. 111-121

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Initiating end-of-life decisions with parents of infants receiving neonatal intensive care

SHAW, Chloe ; CONNABEER, Kathrina ; DREW, Paul ; GALLAGHER, Katie ; ALADANGADY, Narendra ; MARLOW, Neil
Patient education and counseling, 10/02/2020, Pagination inconnue

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Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition - a cross-sectional study of caregiver-reported outcomes

COLLINS, Anna ; BURCHELL, Jodie ; REMEDIOS, Cheryl ; THOMAS, Kristina
PALLIATIVE MEDICINE, 27/02/2020, Pagination inconnue

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Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation - "have I been a good parent?"

MEKELENKAMP, Hilda ; LANKESTER, Arjan C. ; BIERINGS, Marc B. ; SMIERS, Frans J. W. ; DE VRIES, Martine C. ; KARS, Marijke C.
Pediatric blood and cancer, 05/2020, vol.67, n°5, p. 1-8

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End-of-life medical decision-making for children in custody - a collaborative, multi-stakeholder practical approach

CARROLL, Ricki S. ; HIRST, Eliza ; HUDSON, Mark ; SHAW, Molly ; DEUTSCH, Stephanie A.
CHILD ABUSE AND NEGLECT, 03/03/2020, vol.103, Pagination inconnue

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Thème : Aspects juridiques.

FIN VIE ; DECISION MEDICALE ; PARENT ; DROIT FAMILLE ; VIOLENCE

BACKGROUND: Parents have a constitutionally-protected, fundamental right to make decisions concerning the health and well-being of their children, afforded by the Due Process Clause of the Fourteenth Amendment. However, parental rights are not absolute, and may be curtailed after a finding of parental "unfitness" including perpetration of egregious child abuse/neglect. Court intervention may be necessary to assert "parens patriae" authority to protect a child's well-being. Disagreements over medical care for a child (particularly when parent maltreatment resulted in life-altering clinical conditions and parents are suspected of perpetrating abusive injuries) often pose conflicts of interest. End-of-life decision-making involving abuse perpetrators may be influenced by self-interest, due to potential for escalation of criminal charges.
OBJECTIVE: Discuss medico-legal decision-making for children in child welfare custody using a detailed case example involving a child near-fatally, abusively injured by his parents; review of relevant case law/national legal precedents; and clinical policy statements guiding end-of-life decision-making for pediatric patients.
PARTICIPANTS/SETTING/METHODS: Using an exploratory, quasi-qualitative approach, perceived experiences of purposefully-selected taskforce members identified key themes that informed a care de-escalation protocol, implemented across the state.
RESULTS: Key themes included coordinated communication, expedited legal proceedings, and balancing child's best interest (the right not to suffer for a prolonged period of time or sustain complications) with parents' rights and due process concerns, and informed protocol development.
CONCLUSIONS: Practicable guidance established in the protocol can be theoretically adapted at the local level to address the complexity inherent in end-of-life decision-making for children in custody.

Origine : PubMed

Parent moral distress in serious pediatric illness - a dimensional analysis

MOONEY-DOYLE, Kim ; ULRICH, Connie M.
Nursing ethics, 05/03/2020, Pagination inconnue

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Provider perspective on the role of palliative care in hypoplastic left heart syndrome

LOWENSTEIN, Sarah ; MACAULEY, Robert ; PERKO, Kathleen ; RONAI, Christina
Cardiology in the young, 03/2020, vol.30, n°3, p. 377-382

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The dying parent and dependent children - a nationwide survey of hospice and community palliative care support services

COCKLE-HEARNE, Jane ; REED, Elizabeth ; TODD, Jennifer ; REAM, Emma
BMJ supportive and palliative care, 09/03/2020, p. 1-9

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When a child dies - a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories

KOCHEN, Eline M. ; JENKEN, Floor ; BOELEN, Paul A. ; DEBEN, Laura M. A. ; FAHNER, Jurrianne C. ; VAN DEN HOOGEN, Agnes ; TEUNISSEN, Saskia C. C. M. ; GELEIJNS, Karin ; KARS, Marijke C.
BMC palliative care, 12/03/2020, vol.19, n°1, p. 1-22

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After an end-of-life decision - parents' reflections on living with an end-of-life decision for their child

SULLIVAN, Jane E. ; GILLAM, Lynn H. ; MONAGLE, Paul T.
Journal of paediatrics and child health, 19/02/2020, Pagination inconnue

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Techniques to communicate better with parents during end-of-life scenarios in neonatology

LIZOTTE, Marie-Hélène ; BARRINGTON, Keith J. ; SULTAN, Serge ; PENNAFORTE, Thomas ; MOUSSA, Ahmed ; LACHANCE, Christian ; SUREAU, Maia ; ZAO, Yilin ; JANVIER, Annie
Pediatrics, 02/2020, vol.145, n°2, p. 1-11

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Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders - a qualitative study

HEIN, Kerstin ; KNOCHEL, Kathrin ; ZAIMOVIC, Vedrana ; REIMANN, Daniel ; MONZ, Anna ; HEITKAMP, Nari ; BORASIO, Gian Domenico ; FUHRER, Monika
PALLIATIVE MEDICINE, 27/01/2020, p. 1-9

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Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care - a qualitative study

CAI, Siyu ; GUO, Qiaohong ; LUO, Yanhui ; ZHOU, Yuchen ; ABBAS, Ali ; ZHOU, Xuan ; PENG, Xiaoxia
PALLIATIVE MEDICINE, 23/01/2020, Pagination inconnue

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