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Palliative and end of life care for a child - understanding parents’ coping strategies

DARLINGTON, As. ; RANDALL, D. ; LEPPARD, L. ; KOH, M.
Acta paediatrica, 21/06/2020, Pagination inconnue

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La place des parents dans les décisions de LAT en néonatologie - témoignage argumenté et proposition

SPRANZI, Marta ; SENTEUR, Amélie
MEDECINE PALLIATIVE, 06/2020, vol.19, n°3, p. 168-171

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An evaluation of by my side - peer support in written form is acceptable and useful for parents bereaved by childhood cancer

RAHARJO, Callista V. ; HETHERINGTON, Kate ; DONOVAN, Leigh ; FARDELL, Joanna E. ; RUSSELL, Vera ; COHN, Richard J. ; MORGAN, Nicola L. ; SIDDIQUI, Julia ; WAKEFIELD, Claire E.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 01/06/2020, vol.59, n°6, p. 1278-1286

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Bereaved parents' perceptions of infant suffering in the NICU

FORTNEY, Christine A. ; BAUGHCUM, Amy E. ; MOSCATO, Emily L. ; WINNING, Adrien M. ; KEIM, Madelaine C. ; GERHARDT, Cynthia A.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 05/2020, vol.59, n°5, p. 1001-1008

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Dying concerns in young parents with advanced cancer (PWAC) - a scoping review

CAPARSO, Cinzia ; APPEL, Joel ; BENKERT, Ramona
Palliative and supportive care, 15/05/2020, p. 1-10

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Characteristics of parental decision-making for children with advanced cancer who are offered enrollment in early-phase clinical trials - a systematic review

LE ROUZIC, Marie-Amelyne ; CLAUDOT, Frédérique
Pediatric hematology and oncology, 13/05/2020, p. 1-30

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Education priorities for voluntary organisations supporting parents experiencing perinatal loss - a Delphi survey

POWER, Stacey ; MEANEY, Sarah ; COTTER, Riona ; O'DONOGHUE, Keelin
International Journal of Palliative Nursing, 02/04/2020, vol.26, n°4, p. 156-166

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Prolonged grief disorder and positive affect improved by Chinese brush painting group in bereaved parents - a pilot study

XIU, Daiming ; HE, Li ; KILLIKELLY, Clare ; MAERCKER, Andreas
Journal of social work in end-of-life and palliative care, 12/05/2020, p. 1-17

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A review of approaches for resolving disputes between physicians and families on end-of-life care for newborns

CUMMINGS, Brian M. ; MERCURIO, Mark R. ; PARIS, John J.
Journal of perinatology, 11/05/2020, p. 1-5

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Bereaved parents' views on end-of-life care for children with cancer - quality marker implications

JOHNSTON, Emily E. ; MOLINA, Jannelle ; MARTINEZ, Isaac ; DIONNE-ODOM, J. Nicholas ; CURRIE, Erin R. ; CROWL, Terra ; BUTTERWORTH, Lori ; CHAMBERLAIN, Lisa J. ; BHATIA, Smita ; ROSENBERG, Abby R.
Cancer, 08/05/2020, Pagination inconnue

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Thème : Soins.

QUALITE SOIN ; PEDIATRIE ; CANCEROLOGIE ; PARENT ; RECHERCHE QUALITATIVE

Background: End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL care in pediatric oncology.
Methods: this study enrolled a convenience sample of 28 bereaved parents (English- or Spanish-speaking) whose children (0-21 years old) had died of cancer =6 months before. Semistructured interviews were conducted to elicit parental perceptions of medically intense/quality EOL care. Interviews were recorded and transcribed verbatim (30 hours), and study team consensus and content analyses identified themes related to EOL quality markers. Related quotes were scored on a 5-point Likert scale ranging from 1 (supported comfort care) to 5 (supported medically aggressive care).
Results: The children died in 1998-2017 at a mean age of 10 years (SD, 5.2 years); 50% had a solid tumor, and 46% were Spanish-speaking. Themes included 1) home death preference (unless home support was inadequate; median score, 1.6), nonaggressive care (median score, 2.4), and continued anticancer therapy (median score, 3.2); 2) programs/policies that could alleviate barriers limiting a family's time with a dying child (visiting restrictions and financial strains); 3) the need to prepare the family for death (eg, what would happen to the child's body), and 4) perceived abandonment.
Conclusions: This is the first qualitative study to identify quality makers for children dying of cancer from bereaved parents' perspectives. Natural death is generally preferred, and quality measures that address barriers to parents' spending time with their children, a lack of preparation for the events surrounding death, and feelings of abandonment are critical. Future studies need to validate these findings and develop targeted interventions.

Origine : PubMed

Grief and bereavement in parents after the death of a child in low- and middle-income countries

MCNEIL, Michael J. ; NAMISANGO, Eve ; HUNT, Jennifer ; POWELL, Richard A. ; BAKER, Justin N.
Children, 01/05/2020, vol.7, n°5, p. 1-12

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Supporting pediatric patients and their families at the end of life - perspectives from bereaved parents

SEDIG, Laura K. ; SPRUIT, Jessica L. ; PAUL, Trisha K. ; COUSINO, Melissa K. ; MCCAFFERY, Harlan ; PITUCH, Kenneth ; HUTCHINSON, Raymond
The American journal of hospice and palliative care, 06/05/2020, Pagination inconnue

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Racial and ethnic differences in communication and care for children with advanced cancer

MACK, Jennifer W. ; UNO, Hajime ; TWIST, Clare J. ; BAGATELL, Rochelle ; ROSENBERG, Abby R. ; MARACHELIAN, Araz ; GRANGER, M. Meaghan ; BENDER, Julia Glade ; BAKER, Justin N. ; PARK, Julie R. ; COHN, Susan L. ; FERNANDEZ, Jorge H. ; DILLER, Lisa R. ; SHUSTERMAN, Suzanne
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 30/04/2020, p. 1-8

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Consulting with a folk deity before making decisions - spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction

LIN, Shih-Chun ; HUANG, Mei-Chih
International journal of qualitative studies on health and well-being, 2020, vol.15, n°1, p. 1-10

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Creating evidence - findings from a grounded theory of memory-making in neonatal bereavement care in Australia

THORNTON, Rebecca ; NICHOLSON, Patricia ; HARMS, Louise
Journal of pediatric nursing, 25/04/2020, vol.53, p. 29-35

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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.

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