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An introduction to the palliative care of children and young people

CAMARA, Claire ; ROSENGARTEN, Leah
British journal of nursing, 24/09/2020, vol.29, n°17, p. 1008-1009

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Differences in perspectives of pediatricians on advance care planning - a cross-sectional survey

SONG, In Gyu ; KANG, Sung Han ; KIM, Min Sun ; KIM, Cho Hee ; MOON, Yi Ji ; LEE, Jung
BMC palliative care, 18/09/2020, vol.19, n°1, p. 1-24

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Factors associated with the location of expected pediatric deaths in the palliative care context

COOMBS, Sandra ; AOUAD, Phillip ; JAANISTE, Tiina
OMEGA JOURNAL OF DEATH AND DYING, 16/09/2020, Pagination inconnue

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Home-based end of life care for children and their families - a systematic scoping review and narrative synthesis

MALCOLM, Cari ; KNIGHTING, Katherine ; TAYLOR, Charlotte
Journal of pediatric nursing, 16/09/2020, vol.55, p. 126-133

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Concerns of parents with children receiving home-based pediatric palliative care

TUTELMAN, Perri R. ; LIPAK, Keagan G. ; ADEWUMI, Aminat ; FULTS, Marci Z. ; HUMPHREY, Lisa M. ; GERHARDT, Cynthia A.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 12/09/2020, Pagination inconnue

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Charting the territory - end-of-life trajectories for children with complex neurological, metabolic and chromosomal conditions

BAO, Danielle ; FEICHTINGER, Leanne ; ANDREWS, Gail ; PAWLIUK, Colleen ; STEELE, Rose ; SIDEN, Harold Hal
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 08/09/2020, p. 1-8

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Quantifying the language barrier - a total survey of parents' spoken languages and local language skills as perceived by different professions in pediatric palliative care

DREIER, Larissa Alice ; ZERNIKOW, Boris ; WAGER, Julia
Children, 01/09/2020, vol.7, n°9, p. 1-11

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How the Covid-19 lockdown affected the parents of offspring who needed palliative care in the Veneto region of Italy

SANTINI, Anna ; AVAGNINA, Irene ; SALAMON, Eleonora ; GIACOMELLI, Luca ; SHAH, Aashni ; BENINI, Franca
Acta paediatrica, 03/09/2020, p. 1-3

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Analysis of how nurses cope facing the death of a paediatric patient

LLEDO-MORERA, À ; BOSCH-ALCARAZ, A.
Enfermeria intensiva, 24/08/2020, Pagination inconnue

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Pediatric palliative care when covid-19 positive adults are dying in a children's hospital

NORRIS, Sarah E. ; STRUMPH, Kaitlin ; RAHMANI, Nora E.
Pediatrics, 27/08/2020, vol.146, n°3, p. 1-3

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Place du pédiatre en anténatal dans les situations d’anomalies fœtales sévères conduisant à la prise en charge palliative de l’enfant à la naissance

BETREMIEUX, P. ; DONNER, C.
Périnatalité, 01/06/2020, vol.12, n°2, p. 89-96

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Identifying as a good parent - considering the communication theory of identity for parents of children receiving palliative care

WEAVER, Meaghann S. ; HINDS, Pamela S. ; KELLAS, Jody Koenig ; HECHT, Michael L.
JOURNAL OF PALLIATIVE MEDICINE, 28/08/2020, Pagination inconnue

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Initiating palliative care referrals in pediatric oncology

CUVIELLO, Andrea ; RAISANEN, Jessica C. ; DONOHUE, Pamela K. ; WIENER, Lori ; BOSS, Renee D.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 22/07/2020, p. 1-10

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Caring for children with life-limiting illness in Bloemfontein, South Africa - challenging the assumptions of the "good death"

DANIELS-HOWELL, Callie
OMEGA JOURNAL OF DEATH AND DYING, 23/07/2020, Pagination inconnue

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Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas

EBELHAR, Jonathan ; ALLEN, Kristen ; DEGROOTE, Nicholas ; WASILEWSKI-MASKER, Karen ; BROCK, Katharine E.
Pediatric blood and cancer, 24/07/2020, Pagination inconnue

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Thème : Age de la vie, situations spécifiques liées à la fin de vie.

DEMARCHE PALLIATIVE ; PEDIATRIE ; CANCEROLOGIE ; ETUDE RETROSPECTIVE ; SOINS SUPPORT

BACKGROUND: Pediatric patients with sarcomas experience significant morbidity and compromised quality of life throughout their course. These times could be viewed as opportunities for increased subspecialty palliative care (PC). Systematically defining opportunities for additional PC support has not occurred in pediatric oncology. The frequency, timing, and associated factors for palliative opportunities in pediatric patients with sarcomas are unknown.
METHODS: A priori, nine palliative opportunities were defined (disease progression or relapse, admission for symptoms, social concerns or end-of-life, intensive care or bone marrow transplant admission, phase 1 trial or hospice enrollment, do-not-resuscitate status). A single-center retrospective review was conducted on patients aged 0-18 years with bone/soft tissue sarcomas who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated over quartiles from diagnosis to death.
RESULTS: Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities with the majority occurring in the last quartile of the disease course. Number and type of opportunities did not differ by demographics or diagnosis. Eighteen patients (30%) received PC consultation a median of 2.2 months (interquartile range [IQR] 11.5) prior to death. Consultation was unrelated to diagnosis or total opportunities.
CONCLUSIONS: Patients with sarcomas incur repeated events warranting subspecialty PC, which increase toward the end-of-life. Increased PC utilization may help decrease suffering and bolster family coping during these episodes. Additional work should further refine if opportunities differ across cancers, and how to incorporate this framework into clinical oncology care to prevent missed opportunities for PC.

Origine : PubMed

Futility in the paediatric cardiac ICU

FUNDORA, Michael P. ; RODRIGUEZ, Zahidee ; MAHLE, William T.
Cardiology in the young, 24/07/2020, p. 1-8

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"Transition from children's to adult services for adolescents/young adults with life-limiting conditions - developing realist programme theory through an international comparison"

KERR, Helen ; WIDGER, Kimberley ; CULLEN-DEAN, Geraldine ; PRICE, Jayne ; O'HALLORAN, Peter
BMC palliative care, 30/07/2020, vol.19, n°1, p. 1-11

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What do parents value regarding pediatric palliative and hospice care in the home setting?

BOYDEN, Jackelyn Y. ; ERSEK, Mary ; DEATRICK, Janet A. ; WIDGER, Kimberley ; LARAGIONE, Gwenn ; LORD, Blyth ; FEUDTNER, Chris
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 31/07/2020, p. 1-12

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Estimating the prevalence of life-limiting conditions in Queensland for children and young people aged 0-21 years using health administration data

BOWERS, Alison P. ; CHAN, Raymond J. ; HERBERT, Anthony ; YATES, Patsy
Australian health review, 08/2020, vol.44, n°4, p. 630-636

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Thème : Age de la vie, situations spécifiques liées à la fin de vie.

PREVALENCE ; PEDIATRIE ; AUSTRALIE ; MALADIE LETALE

Objective: The prevalence of life-limiting conditions in children in Australia is unknown; such data are needed to inform health service planning for paediatric palliative care. The aim of this study was to estimate the prevalence of life-limiting conditions for children and young people aged 0-21 years living in Queensland, Australia.
Methods: An observational study using linked administrative health data from the 2011 and 2016 calendar years was performed for all individuals with an International Statistical Classification of Diseases and Related Health Problems 10th Revision Australian Modification code relating to a life-limiting condition eligible for palliative care recorded against an admission to a public or private hospital and health service provider in Queensland or against a cause or underlying cause of death in the Queensland Registrar General Deaths.
Results: The overall prevalence of life-limiting conditions per 10000 population increased from 35.2 (95% confidence interval (CI) 34.2-36.2) in 2011 to 43.2 (95% CI 42.1-44.4) in 2016. This increase in prevalence was greatest for children <1 year of age and for those who identified as Aboriginal and Torres Strait Islander.
Conclusion: This study has estimated the prevalence of life-limiting conditions for children and young people aged 0-21 years living in Queensland. Estimation of the number of children and young people with life-limiting conditions can inform health service planning for paediatric palliative care in Queensland. Future research is needed to identify the number of children and young people with life-limiting conditions who do not have an admitted episode. What is known about the topic? Data from the UK indicate that the prevalence of life-limiting conditions among children and young people is increasing. However, such data are not available for the Australian population. Because prevalence data can be affected by population characteristics, it is important to establish country-specific epidemiological data rather than extrapolating data from other countries. Country-specific data can inform health planners and policy makers of the scale of the problem within a geographical and demographic context. This is essential for Australia given the diverse geographical and demographic characteristics and specific needs of Aboriginal and Torres Strait Islander peoples. What does this paper add? This study is the first to provide an estimate of the prevalence of life-limiting conditions in children and young people aged 0-21 years in Queensland. Estimates include the prevalence of life-limiting conditions in children and young people who identify as being of Aboriginal and/or Torres Strait Islander descent. What are the implications for practitioners? The prevalence of life-limiting conditions in Queensland is greater than previously thought. There is a need to grow both a generalist and specialist paediatric palliative care workforce in response to this increasing prevalence. The estimates of prevalence proportions from this study provide the foundation on which future health service activities can be built because they provide country-specific clinical and demographic characteristics.

Origine : PubMed

Defining a "good death" in pediatric oncology - a mixed methods study of healthcare providers

TAYLOR, Mallory R. ; BARTON, Krysta S. ; KINGSLEY, Jenny M. ; HEUNIS, Julia ; ROSENBERG, Abby R.
Children, 31/07/2020, vol.7, n°8, p. 1-14

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