ORBilu: Detailed Reference

Article (Scientific journals)

Soins palliatifs pédiatriques : quelles implications pour les familles et le personnel accompagnant ?

Chénard, Josée; FRIEDEL, Marie; Olivier d'Avignon Marianne et al.

2023 • In Enfances Familles Générations, 42

Peer Reviewed verified by ORBi

Permalink
https://hdl.handle.net/10993/60094

Files (1)Send to Details Statistics Bibliography Similar publications

Files

Full Text

Chénard, Friedel, Olivier d'Avignon et Dubois 2023 EFG.pdf

Author postprint (411.2 kB)

All documents in ORBilu are protected by a user license.

Send to

RIS BibTex APA Chicago Permalink X Linkedin

Details

Keywords :

Pediatric palliative care; incidence; family; health care professional

Abstract :

[en] Research Framework: This article proposes to define pediatric palliative care by adopting an approach centered on the whole family and the various health professionals supporting them. Objectives: The main purpose of this introduction is to define pediatric palliative care, to describe the population likely to benefit from it, and to outline its main repercussions for families and caregivers. It also aims to contextualize each article in the issue. Methodology: This article is based on a review of the literature. Results: A definition of pediatric palliative care, the population concerned and the consequences for the whole family are presented. Conclusions: The authors put forward several avenues for further research in the field of pediatric palliative care. Contribution: This article contributes to the reflection and knowledge enrichment of those working with children and their families in pediatric palliative care. At the same time, it aims to introduce readers unfamiliar with this specific approach to care.

Disciplines :

Nursing Science

Author, co-author :

Chénard, Josée; Université Québec en Outaouais

FRIEDEL, Marie ; University of Luxembourg > Faculty of Science, Technology and Medicine (FSTM) > Department of Life Sciences and Medicine (DLSM) > Medical Education

Olivier d'Avignon Marianne; Université de Laval [CA]

Dubois, Anne-Catherine; UCL - Université Catholique de Louvain [BE]

External co-authors :

yes

Language :

French

Title :

Soins palliatifs pédiatriques : quelles implications pour les familles et le personnel accompagnant ?

Alternative titles :

[en] Pediatric Palliative Care: Implications for Families and Caregivers

Publication date :

2023

Journal title :

Enfances Familles Générations

eISSN :

1708-6310

Publisher :

Erudit Publishers, France

Special issue title :

Familles, intervenants et soins palliatifs pédiatriques

Volume :

42

Peer reviewed :

Peer Reviewed verified by ORBi

Focus Area :

Sustainable Development

Development Goals :

3. Good health and well-being

Additional URL :

http://journals.openedition.org/efg/16314

Available on ORBilu :

since 02 February 2024

Statistics

Number of views

108 (2 by Unilu)

Number of downloads

118 (3 by Unilu)

More statistics

Scopus citations^®

0

Scopus citations^®
without self-citations

0

Bibliography

Ananth, P., M. Lindsay, R. Nye, S. Mun, C. Feudtner et J. Wolfe. 2022. « End-of-life care quality for children with cancer who receive palliative care», Pediatric blood & cancer, vol. 69, no 9.
Anderson, T. et C. Davis. 2011. « Evidence-based practice with families of chronically ill children: a critical literature review», Journal of evidence-based social work, vol. 3, no 84, p. 416–425.
Araújo, J., M. Dourado et P.L. Ferreira. 2015. « Instrumentos de Medição da Qualidade de Vida em Idade Pediátrica em Cuidados Paliativos [Measuring Instruments of the Quality of Life Pediatric Palliative Care]», Acta medica portuguesa, vol. 28, no 4, p. 501–512.
Association canadienne de soins palliatifs. 2006. Soins palliatifs pédiatriques. Principes directeurs et normes de pratique. Normes_pediatriques-soins_palliatifs_31_mars_2006.pdf
Baker, J. N., D.R. Levine, P. S. Hinds, M.S. Weaver, M.J. Cunningham, L. Johnson, D. Anghelescu, B. Mandrell, D.V. Gibson, B. Jones, J. Wolfe, C. Feudtner, S. Friebert, B. Carter et J.R. Kane. 2015. « Research Priorities in Pediatric Palliative Care», The Journal of pediatrics, vol. 167, no 2, p. 467–70.
Bausewein, C., B.A. Daveson, D.C. Currow, J. Downing, L. Deliens, L. Radbruch, K. Defilippi, P. Lopes Ferreira, M. Costantini, R. Harding et I. J. Higginson. 2016. « EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services - Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement», Palliative medicine, vol. 30, no 1, p. 6-22.
Bayer ND, H. Wang, J.A. Yu, D.Z. Kuo, J.S. Halterman et Y.A. Li. 2021. « A national mental health profile of parents of children with medical complexity», Pediatrics, 2021, vol. 148, no 2.
Bellieni, C. V. 2022. « Challenges in Communication with Parents and Children», dans A New Holistic-Evolutive Approach to Pediatric Palliative Care, Cham, Springer International Publishing, p. 37-47.
Benini, F., D. Papadatou, M. Bernadá, F. Craig, L. De Zen, J. Downing, R. Drake, S. Friedrichsdorf, D. Garros, L. Giacomelli, A. Lacerda, P. Lazzarin, S. Marceglia, J. Marston, M.A. Muckaden, S. Papa, E. Parravicini, F. Pellegatta et J. Wolfe. 2022. « International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS», Journal of pain and symptom management, vol. 63, no 5, p. e529–e543.
Bergsträsser, E., E. Cignacco et P. Luck. 2017. « Health care Professionals' Experiences and Needs When Delivering End-of-Life Care to Children: A Qualitative Study», Palliative care, vo. 10.
Bogetz, J.F., E. Johnston, P. Ananth, A. Patneaude, R. Thienprayoon et A. R. Rosenberg. 2022. « Survey of Pediatric Palliative Care Quality Improvement Training, Activities, and Barriers», Journal of pain and symptom management, vol. 64, no 3, p. e123-e131.
Bower, K. A., M. Lau, R. Short, S. Lawrence, J. Beauchamp-Walters et K. Marc-Aurele. 2022. « Impact of Home-Based Pediatric Palliative Care on Hospital and Emergency Department Utilization at a Single Institution», Journal of palliative medicine, vol. 25, no 2, p. 301-306.
Champagne, M., S. Mongeau, L. Bédard et S. Stojanovic. 2014. « Les conditions de vie des familles ayant un enfant gravement malade», dans Le soutien aux familles d’enfants gravement malades. Regards sur des pratiques novatrices, sous la dir. de M. Champagne, S. Mongeau et L. Lussier, Montréal, Presses de l’Université du Québec, p. 17-38.
Charton, L., Labrecque, L. et Lévy, J. 2022. La pandémie de COVID-19: quelles répercussions sur les familles ? Enfances, Familles, Générations, vol. 40, s.p.
Chénard, J., M. O-d’Avignon et A. Devault. 2023, 11-12 mai. Être père d’un enfant malade et handicapé : vulnérabilité et transformation [communication orale], 32e congrès de l'AQSP, QC, Canada.
Chénard, J. et M. Trevisan. 2022. « Quand décider rime avec complexité – une étude qualitative menée auprès de parents devenus proches aidants», Intervention, vol. 33, s.p.
Chénard, J. 2020. « L’expérience de proches impliqués auprès d’un enfant ayant une condition médicale complexe: un autre visage de la proche aidance», Intervention, vol. 151, p. 153-177.
Chocarro González, L., M. Rigal Andrés, J.C. de la Torre-Montero, M. Barceló Escario et R. Martino Alba. 2021. « Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care», Children, vol. 8, no 3, s.p.
Chong, P. H., J.A. de Castro Molina, K. Teo et W. S. Tan. 2018. « Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program», BMC palliative care, vol. 17, no 1, s. p.
Chong, P. H., J. Soo, Z.Z. Yeo, R.Q. Ang et C. Ting. 2020. « Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS)», BMC palliative care, vol. 19, no 1, s.p.
Ciobanu, E. et N. Preston. 2021. « Hearing the voices of children diagnosed with a life-threatening or life-limiting illness and their parents’ accounts in a palliative care setting: A qualitative study», Palliative Medicine, vol. 35, no 5, p. 886‑892.
Connor, S. R., J. Downing et J. Marston. 2017. « Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis», Journal of pain and symptom management, vol. 53, no 2. p. 171-177.
Constantinou, G., R. Garcia, E. Cook et G. Randhawa. 2019. « Children's unmet palliative care needs: a scoping review of parents' perspectives», BMJ supportive & palliative care, vol. 9, no 4, p. 439-450.
Coombes, L. H., T. Wiseman, G. Lucas, A. Sangha et F. E. Murtagh. 2016. « Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use», Palliative medicine, vol. 30, no 10, p. 935–949.
Coombes, L., D. Braybrook, A. Roach, H. Scott, D. Harðardóttir, K. Bristowe, C. Ellis-Smith, M. Bluebond-Langner, L.K. Fraser, J. Downing, B. Farsides, F.E. Murtagh, R. Harding et C-POS. 2022. « Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study», European journal of pediatrics, vol. 181, no 10, p. 3739–3752.
Craig, F., Abu-Saad Huijer, H., Benini, F., Kuttner, L., Wood, C., Feraris, P. C. et B. Zernikow. 2008. « IMPaCCT: Standards pädiatrischer Palliativversorgung in Europa» [IMPaCCT: standards of paediatric palliative care], Schmerz, vol. 22, no 4, p. 401-408.
Davies, B. P. D., Steele, R. et J. Baird. 2022. Pediatric palliative care: A model for exemplary practice, New York, Routledge.
Dewan, T., et E. Cohen. 2013. « Children with medical complexity in Canada», Pediatrics and Child Health, vol. 18, no 10, p. 518-522.
Dinleyici, M., K.B. Çarman, C. Özdemir, K. Harmancı, M. Eren, B. Kirel, E. Şimşek, C. Yarar, A. Duyan Çamurdan et F. Şahin Dağlı. 2019. « Quality-of-life Evaluation of Healthy Siblings of Children with Chronic Illness», Balkan medical journal, vol. 37, no 1, p. 34‑42.
Downing, J., C. Knapp, M.A. Muckaden, S. Fowler-Kerry et J. Marston. 2015. « Priorities for global research into children’s palliative care: results of an International Delphi Study», BMC Palliat Care, vol. 14, no 36, s.p.
Dussel, V. et B. Jones. 2021. « Impact on the family», dans Oxford Textbook of Palliative Care for Children, sous la dir. de R. Hain, A. Goldman, A. Rapoport, M. Meiring et R. Hain, Oxford, Oxford University Press.
Edelstein, H., J. Schippke, S. Sheffe et S. Kingsnorth. 2017. « Children with medical complexity: a scoping review of interventions to support caregiver stress», Child: care, health and development, vol. 43, no 3, p. 323-333.
Fayers, P. et D. Machin. 2008. Quality of Life. the assessment, analysis and interpretation of patient-reported outcomes, West Sussex, Wiley.
Feudtner, C., J. Womer, R. Augustin, S. Remke, J. Wolfe, S. Friebert et D. Weissman. 2013. « Pediatric palliative care programs in children's hospitals: a cross-sectional national survey», Pediatrics, vol. 132, no 6, p. 1063-1070.
Friedel, M. 2014. « Soins palliatifs en pédiatrie, éthique et relation au patient [Palliative care in pediatrics, ethics and relations with the patient]», Soins, Pédiatrie, Puériculture, vol. 281, p. 42–46.
Friedel, M. 2020. « La liaison pédiatrique. Un modèle original de soins palliatifs pédiatriques transmuraux», dans Manuel de soins palliatifs, sous la dir. de R. De Berre, Malakoff Cedex, Dunod, p. 1090-1103.
Friedel, M., I. Aujoulat, A-C. Dubois et J. M. Degryse. 2019. « Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review», Pediatrics, vol. 143, no 1, s.p.
Friedel, M., B. Brichard, S. Boonen, C. Tonon, B. De Terwangne, D. Bellis, M. Mevisse, C. Fonteyne, M. Jaspard, M. Schruse, R. Harding, J. Downing, E. Namisango, J.M. Degryse et I. Aujoulat. 2021. « Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study», Journal of palliative medicine, vol. 24, no 2, p. 181-188.
Gerain, P. et E. Zech. 2018. « Does Informal Caregiving Lead to Parental Burnout? Comparing Parents Having (or Not) Children With Mental and Physical Issues», Frontiers in Psychology, vol. 9, no 884, p. 1-10.
Gilmer, M., T. Foster et C. Bell. 2013. « Parental perceptions of care of children at end of life», Am J Hosp Palliat Care, vol. 30, no 1, p. 53-58.
Goldhagen, J., M. Fafard, K. Komatz, T. Eason et W. C. Livingood. 2016. « Community-based paediatric palliative care for health related quality of life, hospital utilization and costs lessons learned from a pilot study», BMC Palliat Care, vol. 3, no 15, p. 73.
Groupe de travail sur les normes en matière de soins palliatifs pédiatriques. 2006. Normes en matière de soins palliatifs pédiatriques, ministère de la Santé et des Services sociaux, Québec, Gouvernement du Québec. https//publications.msss.gouv.qc.ca/msss/fichiers/ 2006/06-902-05.pdf
Hamre, T. J., E.R. O'Shea, K.A. Hinderer, M.H. Mosha et B. A. Wentland. 2022. « Impact of an Evidence-Based Pediatric Palliative Care Program on Nurses' Self-Efficacy», Journal of continuing education in nursing, vol. 53, no 6, p. 264–272.
Harding, R., J. Wolfe et J.N. Baker. 2017. « Outcome Measurement for Children and Young People», Journal of palliative medicine, vol. 20, no 4, s.p.
Hearn, J. et I. Higginson. 1997. « Outcomes measures in palliative care for advanced cancer patients: a review», J Public Health Med, vol. 19, no 2, p. 193-199.
Huang, I. C., E.A. Shenkman, V.L. Madden, S. Vadaparampil, G. Quinn et C. A. Knapp. 2010. « Measuring quality of life in pediatric palliative care: challenges and potential solutions», Palliative medicine, vol. 24, no 2, p. 175-182.
Kase, S. M., E.D. Waldman et A. S. Weintraub. 2019. « A cross-sectional pilot study of compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care providers in the United States», Palliative & Supportive Care, vol. 17, no 3, p. 269‑275.
Kathryn, J., L. Humphreys, M. Thwin Myint et C. H. Zeanah. 2020. « Increased Risk for Family Violence During the COVID-19 Pandemic», Pediatrics, vol. 146, no 1, p. 1-3.
Kaye, E. C., Z.R. Abramson, J.M. Snaman, S.E. Friebert et J. N. Baker. 2017. « Productivity in Pediatric Palliative Care: Measuring and Monitoring an Elusive Metric», Journal of pain and symptom management, vol. 53, no 5, p. 952-961.
Kaye, E. C., J. Rubenstein, D. Levine, J.N. Baker, D. Dabbs et S. E. Friebert. 2015. « Pediatric palliative care in the community», CA: a cancer journal for clinicians, vol. 65, no 4, p. 316-333.
Kiernan, G., F. Hurley et J. Price. 2022. « ‘With every fibre of their being’: Perspectives of healthcare professionals caring for children with non-malignant life-limiting conditions», Child: Care, Health and Development, vol. 48, no 2, p. 250‑258.
Kirk, S., C. Glendenning et P. Callery. 2005. « Parent or nurse? The experience of being the parent of a technology-dependent child», Journal of Advanced Nursing, vol. 51, no 5, p. 456-464.
Knapp, C. et V. Madden. 2010 « Conducting outcomes research in Paediatric Palliative Care», Am J Hosp Palliat Care, vol. 27, no 4, p. 277-281.
Knapp, C., L. Woodworth, M. Wright, J. Downing, R. Drake, S. Fowler-Kerry, R. Hain et J. Marston. 2011. « Pediatric palliative care provision around the world: a systematic review», Pediatric blood & cancer, vol. 57, no 3, p. 361-368.
Lichtenthal, W. G., C.R. Sweeney, K.E. Roberts, G.W. Corner, L.A. Donovan, H.G. Prigerson et L. Wiener. 2015. « Bereavement Follow-Up After the Death of a Child as a Standard of Care in Pediatric Oncology», Pediatric blood & cancer, vol. 62, Suppl 5, p. S834-S869.
Lindström, C., J. Åman et A. L. Norberg. 2010. « Increased prevalence of burnout symptoms in parents of chronically ill children», Acta paediatrica, vol. 99, no 3, p. 427- 432.
Lo, D. S., N. Hein et J.V. Bulgareli. 2022. « Pediatric palliative care and end-of-life: a systematic review of economic health analyses» Revista paulista de pediatria: orgao oficial da Sociedade de Pediatria de Sao Paulo, vol. 40, p. 1-8.
Long, K. A., V. Lehmann, C.A. Gerhardt, A.L. Carpenter, A. L. Marsland et M. A. Alderfer. 2018. « Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review», Psycho-Oncology, vol. 27, no 6, p. 1467‑1479.
Lysecki, D. L., S. Gupta, A. Rapoport, E. Rhodes, S. Spruin, C. Vadeboncoeur, K. Widger et P. Tanuseputro. 2022. « Children's Health Care Utilization and Cost in the Last Year of Life: A Cohort Comparison with and without Regional Specialist Pediatric Palliative Care», Journal of Palliative Medicine, vol. 25, no 7, p. 1031-1040.
Mantler, T., T.K. Jackson, J. Baer, J. White, B. Ache, K. Shillington et N. Ncube. 2022. « Changes in Care - A Systematic Scoping Review of Transitions for Children with Medical Complexities», Current Pediatric Reviews, vol. 16, p. 165-175.
Mayland, C.R., K.A. Sunderland et M. Cooper. 2022. « Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools», Palliative Medicine, vol. 36, no 8, p. 1186-1206.
Meyers, K., K. Kerr et J. B. Kassel. 2014. « Up close: a field Guide to Community-based Palliative Care in California. Sacramento, CA», California Health Care Foundation. https://www.chcf.org/publication/up-close-a-field-guide-to-community-based-palliative-care-in-california/
Mikolajczak, M. 2018. « Du stress parental ordinaire au burnout parental», dans Le Burnout Parental. Comprendre et Prendre en Charge, sous la dir. de I. Roskam et M. Mikolajczak, Louvain-laNeuve, De Boeck.
Miller, E. G., C. Levy, J.S. Linebarger, J.C. Klick et B. S. Carter. 2015. « Pediatric palliative care: current evidence and evidence gaps», The Journal of Pediatrics, vol. 166, no 6, p. 1536-1540.
Mitchell, A. E., Morawska, A., Mihelic, M. 2020. « A systematic review of parenting interventions for child chronic health conditions», Journal of Child Health Care, vol. 24, no 4, p. 603-628.
Mooney-Doyle, K., Q.M. Franklin, S.R. Burley, M.C. Root. et T. F. Akard. 2022. « National survey of sibling support services in children’s hospitals», Progress in Palliative Care (Science and the Art of Caring), vol. 30, no 6, p. 341‑348.
Namisango, E., K. Bristowe, M.J. Allsop, F.E. Murtagh, M. Abas, I.J. Higginson, J. Downing et R. Harding. 2019. « Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes», The patient, vol. 12, no 1, p. 15-55.
National Institute for Health and Care Excellence. 2019. End of life care for infants, children and young people with life-limiting conditions: planning and management. https://www.nice.org.uk/guidance/ng61/resources/end-of-life-care-for-infants-children-and-young-people-withlifelimiting-conditions-planning-and-management-pdf-1837568722885
Niswander, L. M., P. Cromwell, J. Chirico, A. Gupton et D. N. Korones. 2014. « End-of-life care for children enrolled in a community-based pediatric palliative care program», Journal of palliative medicine, vol. 17, no 5, p. 589–591.
Oates, J. R. et C. V. Maani. 2022. Death and Dying, Treasure Island, StatPearls Publishing.
O.-d’Avignon, M. 2012. « La fratrie en contexte de soins palliatifs pédiatriques. Conséquences, besoins et pistes d’intervention», dans La vie … avant, pendant et après. Les soins palliatifs pédiatriques, sous la dir. de N. Humbert, Montréal, Édition Intervenir, CHU Sainte-Justine, p. 267-281.
Papadatou, D. 2021. « Healthcare providers’ responses to the death of a child», dans Oxford Textbook of Palliative Care for Children, sous la dir. de R. Hain, A. Goldman, A. Rapoport, M. Meiring, R. Hain, A. Goldman, A. Rapoport et M. Meiring, Oxford, Oxford University Press, p. 410–419.
Pelke, S., J. Wager, B.B. Claus, K. Stening, B. Zernikow et M. Reuther. 2021. « Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families-A Multicenter Prospective Longitudinal Study», Children, vol. 8, no 10, s.p.
Perrin, J. M., E. Anderson et J. Van Claeve. 2014. « The Rise In Chronic Conditions Among Infants, Children, And Youth Can Be Met With Continued Health System Innovations», Health Affairs; vol. 3, no 12, p. 2099-2105.
Rico-Mena P, J. Güeita-Rodríguez, R. Martino-Alba, M. Castel-Sánchez, D. Palacios-Ceña. 2023. « The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team», Children. vol. 10, no 4, s.p.
Rodriguez, E. M., M.J. Dunn, T. Zuckerman, L. Hughart, K. Vannatta, C.A. Gerhardt, M. Saylor, C.M. Schuele et B. E. Compas 2013. « Mother-child communication and maternal depressive symptoms in families of children with cancer: Integrating macro and micro levels of analysis», Journal of Pediatric Psychology, vol. 38, no 7, p. 732‑743.
Rourke, M. T. 2007. « Compassion fatigue in pediatric palliative care providers», Pediatric Clinics of North America, vol. 54, no 5, p. 631‑644.
Regroupement québécois des maladies orphelines (RQMO). 2023, 27 juin. Informations sur les maladies rares et orphelines. Information sur les maladies rares et orphelines – RQMO
Scott, H. M., L. Coombes, D. Braybrook, A. Roach, D. Harðardóttir, K. Bristowe, C. Ellis-Smith, J. Downing, F.E. Murtagh, B. Farsides, L.K. Fraser, M. Bluebond-Langner et R. Harding. 2023. « Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study», Palliative medicine, vol 37, no 6, p. 856-865.
Service public fédéral santé publique, sécurité de la chaîne alimentaire et environnement. 2016. Loi modifiant la loi du 14 juin 2002 relative aux soins palliatifs en vue d’élargir la définition des soins palliatifs. Loi du 21/07/2016 modifiant la loi du 14 juin 2002 relative aux soins palliatifs en vue d'elargir la definition des soins palliatifs (openjustice.be)
Shanafelt, T., A. Adjei et F. L. Meyskens. 2003. « When your favorite patient relapses: Physician grief and well-being in the practice of oncology», Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, vol. 21, no 13, p. 2616‑2619.
Song, I. G., S.Y. Kwon, Y.J. Chang, M.S. Kim, S.H. Jeong, S.M. Hahn, K.T. Han, S.J. Park et J.Y. Choi.
2021. « Paediatric palliative screening scale as a useful tool for clinicians' assessment of palliative care needs of pediatric patients: a retrospective cohort study», BMC palliative care, vol. 20, no 1, s.p.
Statistique Canada. 2022. https://www.statcan.gc.ca/fr/debut
Swinney, R., L. Yin, A. Lee, D. Rubin et C. Anderson, C. 2007. « The role of support staff in pediatric palliative care: Their perceptions, training, and available resources», Journal of Palliative Care, vol. 23, no 1, p. 44‑50.
Tay, J., K. Widger et R. Stremler. 2022. « Self-reported experiences of siblings of children with life-threatening conditions: A scoping review», Journal of child health care: for professionals working with children in the hospital and community, vol. 26, no 4, p. 517-530.
Teicher, J., C. Moore, K. Esser, N. Weiser, D. Arje, E. Cohen et J. Orkin. 2022. « The Experience of Parental Caregiving for Children With Medical Complexity», Clinical pediatrics.
Verma, R., Y. Mehdian, N. Sheth, K. Netten, J. Vinette, A. Edwards, J. Polyviou, J. Orkin et R. Amin.
2020. « Screening for psychosocial risk in families of children with medical complexity (CMC)», Paediatrics & Child Health, vol. 25, no S2, s.p.
Virdun, C., N. Brown, J. Phillips, T. Luckett, M. Agar, A. Green et P. M. Davidson. 2015. « Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach», Collegian (Royal College of Nursing), vol. 22, no 4, p. 421-431.
Voyles, E. 2013. « The development and outcomes of a paediatric palliative care program: a quality improvement process», Journal of Pediatric Nursing, vol. 28, no 2, p. 196-199.
Weaver, M. S., K.E. Heinze, K.P. Kelly, L. Wiener, R.L. Casey, C.J. Bell, J. Wolfe, A.M. Garee, A. Watson et P. S. Hinds. 2015. « Palliative Care as a Standard of Care in Pediatric Oncology», Pediatric blood & cancer, vol. 62, Suppl 5, p. S829-S833.
Widger, K., C. Medeiros, M. Trenholm, G. Zuniga-Villanueva et J. C. Streuli. 2019. « Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review», Journal of palliative medicine, vol. 22, no 2, p. 199-219.
Winger, A., L.G. Kvarme et B. Løyland. 2020. « Family experiences with palliative care for children at home: a systematic literature review», BMC Palliat Care, vol. 19, no 1, s.p.
World Health Assembly. 2014. Strengthening of palliative care as a component of integrated treatment within the continuum of care, 134th session, EB134/CONF./6.
Yu, J. A., N.D. Bayer, S.R. Beach, D.Z. Kuo et A. J. Houtrow. 2022. « A national profile of families and caregivers of children with disabilities and/or medical complexity», Acad Pediatr, vol. 22, no 8, p. 1489-1498.
Zuniga-Villanueva, G., J.A. Ramos-Guerrero, M. Osio-Saldaña, J.A. Casas, J. Marston et R. Okhuysen-Cawley. 2021. « Quality Indicators in Pediatric Palliative Care: Considerations for Latin America», Children, vol. 8, no 3, s.p.

Similar publications