Faktory ovlivňující sdělování závažné zprávy v kontextu dětské onkologie

• Název práce v češtině: Faktory ovlivňující sdělování závažné zprávy v kontextu dětské onkologie
• Název v anglickém jazyce: Factors Influencing the Delivery of Serious News in Pediatric Oncology
• Klíčová slova: komunikace, závažná zpráva, pediatrie, dětská onkologie
• Klíčová slova anglicky: communication, serious news, pediatrics, pediatric oncology
• Akademický rok vypsání: 2016/2017
• Typ práce: disertační práce
• Jazyk práce: čeština
• Ústav: externí pracoviště (11-00099)
• Vedoucí / školitel: PhDr. Martin Loučka, Ph.D.
• Řešitel: skrytý - zadáno a potvrzeno stud. odd.
• Datum přihlášení: 09.10.2016
• Datum zadání: 09.10.2016
• Datum potvrzení stud. oddělením: 09.10.2016
• Datum a čas obhajoby: 06.02.2025 09:30
• Místo konání obhajoby: Ke Karlovu 11, Praha 2, budova D1, PSYCHP1, Ke Karlovu 11, Vondráčkova posluchárna
• Datum odevzdání elektronické podoby: 05.01.2025
• Datum proběhlé obhajoby: 06.02.2025
• Předmět: Obhajoba dizertační práce (B90002)
• Oponenti: doc. MUDr. Lucie Šrámková, Ph.D.

Seznam odborné literatury

1. Sisk BA, Bluebond-Langner M, Wiener L, Mack J, Wolfe J. Prognostic disclosures to children: A historical perspective. Pediatrics. 2016;138(3). doi:10.1542/peds.2016-1278
2. RICHMOND JB. PSYCHOLOGIC ASPECTS OF MANAGEMENT OF CHILDREN WITH MALIGNANT DISEASES. Arch Pediatr Adolesc Med. 1955;89(1):42. doi:10.1001/archpedi.1955.02050110058008
3. Morrissey JR. Children’s Adaptation to Fatal Illness. Soc Work. 1963;8(4):81-88. doi:10.1093/sw/8.4.81
4. Nagy M. The Child’s Theories concerning Death. Pedagog Semin J Genet Psychol. 1948;73(1):3-27. doi:10.1080/08856559.1948.10533458
5. Piaget J. Necessite Et Signification Des Recherches Comparatives En Psychologie Genetique. International Journal of Psychology. 1966;1(1):3-13. doi:10.1080/00207596608247041
6. Childers P, Wimmer M. The Concept of Death in Early Childhood. Child Dev. 1971;42(4):1299. doi:10.2307/1127816
7. Koocher GP. Childhood, death, and cognitive development. Dev Psychol. 1973;9(3):369-375. doi:10.1037/h0034917
8. Kane B. Children’s Concepts of Death. J Genet Psychol. 1979;134(1):141-153. doi:10.1080/00221325.1979.10533406
9. Piaget J. Piaget’s Theory. In: Piaget and His School. Springer Berlin Heidelberg; 1976:11-23. doi:10.1007/978-3-642-46323-5_2
10. Piaget J. Intellectual Evolution from Adolescence to Adulthood. Hum Dev. 1972;15(1):1-12. doi:10.1159/000271225
11. Binger CM, Ablin AR, Feuerstein RC, Kushner JH, Zoger S, Mikkelsen C. Childhood Leukemia. New England Journal of Medicine. 1969;280(8):414-418. doi:10.1056/NEJM196902202800804
12. Spinetta JJ, Rigler D, Karon M. Anxiety in the dying child. . Pediatrics 1973;52(6):841-845.
13. Spinetta JJ. The dying child’s awareness of death: A review. Psychol Bull. 1974;81(4):256-260. doi:10.1037/h0036229
14. Spinetta JJ, Rigler D, Karon M. Personal space as a measure of a dying child’s sense of isolation. J Consult Clin Psychol. 1974;42(6):751-756. doi:10.1037/h0037567
15. Bluebond-Langner M Princeton NPUP. Private Words of Dying Children .; 1978.
16. Warren G. Discussion Summary: Telling Truth in Pediatrics. Prog Clin Biol Res 1983:139:195-6.
17. Pantell RH, Stewart TJ, Dias JK, Wells P, Ross AW. Physician communication with children and parents. Pediatrics 1982 Sep;70(3):396-402.
18. Vernick J, Karon M. Who’s Afraid of Death On a Leukemia Ward? Arch Pediatr Adolesc Med. 1965;109(5):393. doi:10.1001/archpedi.1965.02090020395003
19. Kreicbergs U, Valdimarsdóttir U, Onelöv E, Henter JI, Steineck G. Talking about Death with Children Who Have Severe Malignant Disease. New England Journal of Medicine. 2004;351(12):1175-1186. doi:10.1056/NEJMoa040366
20. Masera G, Chesler MA, Jankovic M, et al. SIOP working committee on psychosocial issues in pediatric oncology: Guidelines for communication of the diagnosis. Med Pediatr Oncol. 1997;28(5):382-385. doi:10.1002/(SICI)1096-911X(199705)28:5<382::AID-MPO12>3.0.CO;2-D
21. no authors listed. Informed consent, parental permission, and assent in pediatric practice. Committee on Bioethics, American Academy of Pediatrics. Pediatrics. 1995;(95(2):314-7.).
22. Last BF, Veldhuizen AMH Van. Information About Diagnosis and Prognosis Related to Anxiety and Depression in Children with Cancer Aged 8-16 Years. 1996;32(2):290-294.
23. Claflin CJ, Barbarin OA. Does “telling” less protect more? Relationships among age, information disclosure, and what children with cancer see and feel. J Pediatr Psychol. 1991;16(2):169-191. http://www.ncbi.nlm.nih.gov/pubmed/2061787
24. Chesler MA, Paris J, Barbarin OA. “Telling” the Child with Cancer: Parental Choices to Share Information with Ill Children. J Pediatr Psychol. 1986;11(4):497-516. doi:10.1093/jpepsy/11.4.497
25. Dunsmore J, Quine S. Information, Support, and Decision-Making Needs and Preferences of Adolescents with Cancer. J Psychosoc Oncol. 1995;13(4):39-56. doi:10.1300/J077V13N04_03
26. Goldman A, Christie D. Children with Cancer Talk About Their Own Death with Their Families. Pediatr Hematol Oncol. 1993;10(3):223-231. doi:10.3109/08880019309029488
27. Levi RB, Marsick R, Drotar D, Kodish ED. Diagnosis, disclosure, and informed consent: learning from parents of children with cancer. J Pediatr Hematol Oncol. 2000;22(1):3-12.
28. Buckman R, Kason Y. How To Break Bad News A Guide for Health Care Professionals. Johns Hopkins University Press; 1992. https://a.co/d/fLtwDmu
29. Rosenzweig MQ. Breaking bad news: a guide for effective and empathetic communication. Nurse Pract. 2012;37:1-4. doi:10.1097/01.NPR.0000408626.24599.9e
30. Coyne I, Of H, Nursing CS. Information-sharing between healthcare professionals , parents and children with cancer : more than a matter of information exchange. Eur J Cancer Care (Engl). 2016;(October 2015):141-156. doi:10.1111/ecc.12411
31. Kästel A, Enskär K, Björk O. Parents ’ views on information in childhood cancer care. European Journal of Oncology Nursing. 2011;15(4):290-295. doi:10.1016/j.ejon.2010.10.007
32. Young B, Dixon-Woods M, Windridge KC, Heney D. Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. BMJ. 2003;326(7384):305.
33. Kessel RM, Roth M, Moody K. Day One Talk : parent preferences when learning that their child has cancer. Support Care Cancer. 2013;21:2977-2982. doi:10.1007/s00520-013-1874-8
34. Zwaanswijk M, Tates K, Dulmen S Van, Hoogerbrugge PM, Kamps WA, Bensing JM. Young patients ’, parents ’, and survivors ’ communication preferences in paediatric oncology : Results of online focus groups. BMC Pediatr. 2007;7(35):1-10. doi:10.1186/1471-2431-7-35
35. Stein A, Dalton L, Rapa E, et al. Communication with children and adolescents about the diagnosis of their own life-threatening condition. The Lancet. 2019;393(10176):1150-1163. doi:10.1016/S0140-6736(18)33201-X
36. Wasserman AL. The Psychological Status of Survivors of Childhood/Adolescent Hodgkin’s Disease. Arch Pediatr Adolesc Med. 1987;141(6):626. doi:10.1001/archpedi.1987.04460060044029
37. Fritz GK, Williams JR, Amylon M. After treatment ends: Psychosocial sequelae in pediatric cancer survivors. American Journal of Orthopsychiatry. 1988;58(4):552-561. doi:10.1111/j.1939-0025.1988.tb01619.x
38. Jacobs S, Perez J, Cheng YI, Sill A, Wang J, Lyon ME. Adolescent end of life preferences and congruence with their parents’ preferences: Results of a survey of adolescents with cancer. Pediatr Blood Cancer. 2015;62(4):710-714. doi:10.1002/pbc.25358
39. Essig S, Steiner C, Kuehni CE, Weber H, Kiss A. Improving Communication in Adolescent Cancer Care : A Multiperspective Study. 2016;(October 2015):1423-1430. doi:10.1002/pbc
40. Clarke, Fletcher. Communication Issues Faced by Parents Who Have a Child Diagnosed With Cancer. doi:https://doi.org/10.1177/1043454203254040
41. Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. J OURNAL OF C LINICAL O NCOLOGY Communication About Prognosis Between Parents and Physicians of Children With Cancer : Parent Preferences and the Impact of Prognostic Information. 2006;24(33). doi:10.1200/JCO.2006.06.5326
42. Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC. Hope and prognostic disclosure. Journal of Clinical Oncology. 2007;25(35):5636-5642. doi:10.1200/JCO.2007.12.6110
43. Mack JW, Smith TJ. Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol. 2012;30(22):2715-2717. doi:10.1200/JCO.2012.42.4564
44. Aein F, Delaram M. Giving bad news: a qualitative research exploration. Iran Red Crescent Med J. 2014;16(6):e8197. doi:10.5812/ircmj.8197
45. Yoshida S, Amano K, Ohta H, et al. A Comprehensive Study of the Distressing Experiences and Support Needs of Parents of Children with Intractable Cancer. 2014;44(September):1181-1188. doi:10.1093/jjco/hyu140
46. Durall A, Zurakowski D, Wolfe J. Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics. 2012;129(4). doi:10.1542/peds.2011-2695
47. Sisk BA, Friedrich AB, Kaye EC, Baker JN, Mack JW, DuBois JM. Multilevel barriers to communication in pediatric oncology: Clinicians’ perspectives. Cancer. 2021;127(12):2130-2138. doi:10.1002/cncr.33467
48. Loučka M, Vančura J. Koncept smrti u dětí: komponenty a determinanty. Československá psychologie 55(1), 38-48. Published online 2011.
49. Bates AT, Kearney JA. Understanding death with limited experience in life: dying children’s and adolescents’ understanding of their own terminal illness and death. Curr Opin Support Palliat Care. 2015;9(1):40-45. doi:10.1097/SPC.0000000000000118
50. Sourkes BM. Armfuls of Time : The Psychological Experience of the Child with a Life-Threatening Illness. (Pittsburgh : University of Pittsburgh Press, ed.).; 1995.
51. Poltorak DY, Glazer JP. The Development of Children’s Understanding of Death: Cognitive and Psychodynamic Considerations. Child Adolesc Psychiatr Clin N Am. 2006;15(3):567-573. doi:10.1016/j.chc.2006.03.003
52. Wolfe J, Grier HE, Klar N, et al. Symptoms and Suffering at the End of Life in Children with Cancer. New England Journal of Medicine. 2000;342(5):326-333. doi:10.1056/NEJM200002033420506
53. Waldman ED, Levine JM. The Day Two Talk: Early Integration of Palliative Care Principles in Pediatric Oncology. Journal of Clinical Oncology. Published online 2016:1-3.
54. Mack JW, Wolfe J. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. [Review] [20 refs]. Curr Opin Pediatr. 2006;18(1):10-14.
55. Hechler T, Blankenburg M, Friedrichsdorf S, et al. Parents’ Perspective on Symptoms, Quality of Life, Characteristics of Death and End-of-Life Decisions for Children Dying from Cancer. Klin Padiatr. 2008;220(3):166-174. doi:10.1055/s-2008-1065347
56. Kaye EC, Friebert S, Baker JN. Early Integration of Palliative Care for Children with High-Risk Cancer and Their Families. Pediatr Blood Cancer. 2016;63(4):593-597. doi:10.1002/pbc.25848
57. Blazin L, Cecchini C, Habashy C, Kaye E, Baker J. Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice. Children. 2018;5(3):40. doi:10.3390/children5030040
58. Coyne I, O’Mathúna DP, Gibson F, Shields L, Leclercq E, Sheaf G. Interventions for promoting participation in shared decision-making for children with cancer. Cochrane Database of Systematic Reviews. 2016;2016(11). doi:10.1002/14651858.CD008970.pub3
59. Chan RJ, Webster J, Marquart L. Information interventions for orienting patients and their carers to cancer care facilities. Chan RJ, ed. Cochrane Database of Systematic Reviews. Published online December 7, 2011. doi:10.1002/14651858.cd008273.pub2
60. Mack JW, Hilden JM, Watterson J, et al. Parent and physician perspectives on quality of care at the end of life in children with cancer. Journal of Clinical Oncology. 2005;23(36):9155-9161. doi:10.1200/JCO.2005.04.010
61. Ranmal R, Prictor M, Tim Scott J, Scott JT. Interventions for improving communication with children and adolescents about their cancer. Cochrane database of systematic reviews (Online). 2008;(4). doi:10.1002/14651858.CD002969.pub2
62. Beale EA, Baile WF, Aaron J. Silence is not golden: Communicating with children dying from cancer. Journal of Clinical Oncology. 2005;23(15):3629-3631. doi:10.1200/JCO.2005.11.015
63. Lannen P, Wolfe J, MacK J, Onelov E, Nyberg U, Kreicbergs U. Absorbing information about a child’s incurable cancer. Oncology. 2010;78(3-4):259-266. doi:10.1159/000315732
64. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302-311. doi:10.1634/theoncologist.5-4-302
65. Meitar D, Karnieli-Miller O. Twelve tips to manage a breaking bad news process: Using S-P-w-ICE-S – A revised version of the SPIKES protocol. Med Teach. 2022;44(10):1087-1091. doi:10.1080/0142159X.2021.1928618
66. Taylor KM. ‘Telling bad news’: physicians and the disclosure of undesirable information. Sociol Health Illn. 1988;10(2):109-132. doi:10.1111/j.1467-9566.1988.tb00001.x
67. Vandekieft GK. Breaking Bad News. Am Fam Physician. 2001;(64(12)):1975-1979.
68. Meitar D, Karnieli-Miller O, Eidelman S. The impact of senior medical students’ personal difficulties on their communication patterns in breaking bad news. Acad Med. 2009;84(11):1582-1594. doi:10.1097/ACM.0b013e3181bb2b94
69. Silverman J, Kurtz S, Draper J. Skills for Communicating with Patients. CRC Press; 2016. doi:10.1201/9781910227268
70. Frankel RM, Stein T. Getting the most out of the clinical encounter: the four habits model. J Med Pract Manage 16(4). Published online 2001:184-191.
71. Maxfield H, Delzell JE, Chumley H. Eliciting the patient’s perspective: Does experience or type of case make a difference? Patient Educ Couns. 2011;82(2):222-225. doi:10.1016/j.pec.2010.03.018
72. Robinson JD, Heritage J. Physicians’ opening questions and patients’ satisfaction. Patient Educ Couns. 2006;60(3):279-285. doi:10.1016/j.pec.2005.11.009
73. Fallowfield L. Giving sad and bad news. The Lancet. 1993;341(8843):476-478. doi:10.1016/0140-6736(93)90219-7
74. Eggly S, Penner L, Albrecht TL, et al. Discussing Bad News in the Outpatient Oncology Clinic: Rethinking Current Communication Guidelines. Journal of Clinical Oncology. 2006;24(4):716-719. doi:10.1200/JCO.2005.03.0577
75. Mailankody S, Sherigar P, Pai A, et al. PENS approach for breaking bad news in the oncology outpatient setting: a real-world report. Supportive Care in Cancer. 2023;31(1). doi:10.1007/s00520-022-07458-9
76. Back AL, Arnold RM. Discussing Prognosis: “How Much Do You Want to Know?” Talking to Patients Who Do Not Want Information or Who Are Ambivalent. Journal of Clinical Oncology. 2006;24(25):4214-4217. doi:10.1200/JCO.2006.06.008
77. Kenen J. When Patients Don’t Want to Know. Cure 2008. 2008;7(3).
78. Kumar V, Sarkhel S. Clinical Practice Guidelines on Breaking Bad News. Indian J Psychiatry. 2023;65(2):238-244. doi:10.4103/indianjpsychiatry.indianjpsychiatry_498_22
79. Kaye Peter. Breaking Bad News: A 10 Step Approach. EPL Publications; 1995.
80. Munjal S. Breaking Bad News. Curr Psychiatr. 2016;16(9):e1-e3. doi:10.4088/PCC.16l01972
81. Ptacek JT, Eberhardt TL. Breaking bad news: A Review of the Literature. JAMA: The Journal of the American Medical Association. 1996;276:496-502. doi:10.1177/1534734614554284
82. Back AL, Curtis JR. Communicating bad news. Western Journal of Medicine. 2002;176(3):177-180. doi:10.7748/ns2010.06.24.40.59.c7832
83. Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients. Cambridge University Press; 2009. doi:10.1017/CBO9780511576454
84. Brewin TB. Three ways of giving bad news. Lancet. 1991;337(8751):1207-1209. doi:10.1016/0140-6736(91)92870-8
85. Suchman AL. A Model of Empathic Communication in the Medical Interview. JAMA: The Journal of the American Medical Association. 1997;277(8):678. doi:10.1001/jama.1997.03540320082047
86. I Jedlicka-Köhler, M Götz, I Eichler. Parents’ recollection of the initial communication of the diagnosis of cystic fibrosis. Pediatrics. 1996;97(2):204-209.
87. Jalali R, Jalali A, Jalilian M. Breaking bad news in medical services: a comprehensive systematic review. Heliyon. 2023;9(4). doi:10.1016/j.heliyon.2023.e14734
88. Hagerty RG, Butow PN, Ellis PM, et al. Communicating with realism and hope: Incurable cancer patients’ views on the disclosure of prognosis. Journal of Clinical Oncology. 2005;23(6):1278-1288. doi:10.1200/JCO.2005.11.138
89. Back AL, Anderson WG, Bunch L, et al. Communication about cancer near the end of life. Cancer. 2008;113(7):1897-1910. doi:10.1002/cncr.23653
90. Mirza RD, Ren M, Agarwal A, Guyatt GH. Assessing Patient Perspectives on Receiving Bad News: A Survey of 1337 Patients With Life-Changing Diagnoses. AJOB Empir Bioeth. 2019;10(1):36-43. doi:10.1080/23294515.2018.1543218
91. von Blanckenburg P, Hofmann M, Rief W, Seifart U, Seifart C. Assessing patients´ preferences for breaking Bad News according to the SPIKES-Protocol: the MABBAN scale. Patient Educ Couns. 2020;103(8):1623-1629. doi:10.1016/j.pec.2020.02.036
92. McFarlane J, Riggins J, Smith TJ. SPIKE$: A six-step protocol for delivering bad news about the cost of medical care. Journal of Clinical Oncology. 2008;26(25):4200-4204. doi:10.1200/JCO.2007.15.6208
93. Wolfe AD, Frierdich SA, Wish J, Kilgore-Carlin J, Plotkin JA, Hoover-Regan M. Sharing life-altering information: Development of pediatric hospital guidelines and team training. J Palliat Med. 2014;17(9):1011-1028. doi:10.1089/jpm.2013.0620
94. Narayanan V, Bista B, Koshy C, Narayanan; V. “BREAKS” Protocol for Breaking Bad News. Indian J Palliat Care May­Aug;. 2010;16(2):61-65. doi:10.4103/0973­1075.68401
95. Seifart C, Hofmann M, Bär T, Riera Knorrenschild J, Seifart U, Rief W. Breaking bad news-what patients want and what they get: Evaluating the SPIKES protocol in Germany. Annals of Oncology. 2014;25(3):707-711. doi:10.1093/annonc/mdt582
96. Maksymowicz S, Libura M, Malarkiewicz P. Overcoming therapeutic nihilism. Breaking bad news of amyotrophic lateral sclerosis—a patient-centred perspective in rare diseases. Neurological Sciences. 2022;43(7):4257-4265. doi:10.1007/s10072-022-05931-1
97. Meitar D, Karnieli-Miller O. Twelve tips to manage a breaking bad news process: Using S-P-w-ICE-S – A revised version of the SPIKES protocol. Med Teach. 2022;44(10):1087-1091. doi:10.1080/0142159X.2021.1928618
98. Rabow MW, McPhee SJ. Beyond breaking bad news: How to help patients who suffer. Western Journal of Medicine. 1999;171(4):260-263.
99. Back AL, Bauer-Wu SM, Rushton CH, Halifax J. Original Articles Compassionate Silence in the Patient-Clinician Encounter: A Contemplative Approach.
100. Kawabata M, Gastaldo D. The Less Said, the Better: Interpreting Silence in Qualitative Research. Int J Qual Methods. 2015;14(4). doi:10.1177/1609406915618123
101. Bao D. Exploring How Silence Communicates. English Language Teaching Educational Journal. 2020;3(1):1. doi:10.12928/eltej.v3i1.1939
102. Chaturvedi SK. Embracing the Sound of Silence in Clinical Practice. J Psychosoc Rehabil Ment Health. Published online September 1, 2024. doi:10.1007/s40737-024-00433-z
103. Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K. Approaching Difficult Communication Tasks in Oncology. CA Cancer J Clin. 2005;55(3):164-177. doi:10.3322/canjclin.55.3.164
104. Rollnick S, Miller WR. What is Motivational Interviewing? Behavioural and Cognitive Psychotherapy. 1995;23(4):325-334. doi:10.1017/S135246580001643X
105. Westendorp J, Stouthard J, Meijers MC, et al. The power of clinician-expressed empathy to increase information recall in advanced breast cancer care: an observational study in clinical care, exploring the mediating role of anxiety. Patient Educ Couns. 2021;104(5):1109-1115. doi:10.1016/j.pec.2020.10.025
106. Fortin VI AH, Dwamena FC, Frankel RM, Lepisto BL, Smith RC. Smith’s Patient-Centered Interviewing: An Evidence-Based Method. McGraw-Hill Professional Pub; 2012.
107. Van Vliet LM, Epstein AS. Current State of the Art and Science of Patient-Clinician Communication in Progressive Disease: Patients’ Need to Know and Need to Feel Known. Vol 32.; 2014. www.oncotalk.info/
108. Sisk BA, Mack JW, Ashworth R, DuBois J. Communication in pediatric oncology: State of the field and research agenda. Pediatr Blood Cancer. 2018;65(1):1-10. doi:10.1002/pbc.26727
109. van Vliet LM, Back AL. The different faces of empathy in cancer care: From a desired virtue to an evidence-based communication process. Cancer. 2021;127(22):4137-4139. doi:10.1002/cncr.33833
110. Clemente I. Clinicians’ Routine Use of Non-Disclosure: Prioritizing “Protection” over the Information Needs of Adolescents with Cancer.
111. Verberne LM, Schouten-van Meeteren AYN, Bosman DK, et al. Parental experiences with a paediatric palliative care team: A qualitative study. Palliat Med. 2017;31(10):956-963. doi:10.1177/0269216317692682
112. Singh Ospina N, Phillips KA, Rodriguez-Gutierrez R, et al. Eliciting the Patient’s Agenda- Secondary Analysis of Recorded Clinical Encounters. J Gen Intern Med. 2019;34(1):36-40. doi:10.1007/s11606-018-4540-5
113. Nunn K. Delivering bad news. J Paediatr Child Health. 2019;55(6):617-620. doi:10.1111/jpc.14443
114. Seifart C, Falch M, Wege M, Maier RF, Pedrosa Carrasco AJ. NEO-SPEAK: A conceptual framework that underpins breaking bad news in neonatology. Front Pediatr. 2022;10(November):1-10. doi:10.3389/fped.2022.1044210
115. Parry R, Land V, Seymour J. How to communicate with patients about future illness progression and end of life: A systematic review. BMJ Support Palliat Care. 2014;4(4):331-341. doi:10.1136/bmjspcare-2014-000649
116. Bernacki RE, Block SD. Communication about serious illness care goals: A review and synthesis of best practices. JAMA Intern Med. 2014;174(12):1994-2003. doi:10.1001/jamainternmed.2014.5271
117. Comer A, Fettig L, Torke AM. Identifying Goals of Care. Medical Clinics of North America. 2020;104(5):767-775. doi:10.1016/j.mcna.2020.06.002
118. Baxter R, Pusa S, Andersson S, Fromme EK, Paladino J, Sandgren A. Core elements of serious illness conversations: an integrative systematic review. BMJ Support Palliat Care. Published online June 27, 2023:spcare-2023-004163. doi:10.1136/spcare-2023-004163
119. Hafid A, Howard M, Guenter D, et al. Advance care planning conversations in primary care: a quality improvement project using the Serious Illness Care Program. BMC Palliat Care. 2021;20(1). doi:10.1186/s12904-021-00817-z
120. Childers JW, Back AL, Tulsky JA, Arnold RM. REMAP: A Framework for Goals of Care Conversations. J Oncol Pract. Published online 2017:JOP2016018796. doi:10.1200/JOP.2016.018796
121. Dunlay SM, Strand JJ. How to discuss goals of care with patients. Trends Cardiovasc Med. 2016;26(1):36-43. doi:10.1016/j.tcm.2015.03.018
122. Jain N, Bernacki RE. Goals of Care Conversations in Serious Illness. Medical Clinics of North America. 2020;104(3):375-389. doi:10.1016/j.mcna.2019.12.001
123. Clarke DABNCABACAJ, Alice Momeyer DACM, Rosselet DRACAR, Sinnott PL, Overcash PACFFJ. Serious Illness Conversation Training for Inpatient Medical Oncology Advanced Practice Providers: A Quality Improvement Project. J Adv Pract Oncol. 2023;14(1):37-48. doi:10.6004/jadpro.2023.14.1.3
124. Bernacki R, Hutchings M, Vick J, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open. 2015;5:9032. doi:10.1136/bmjopen-2015
125. DeCourcey DD, Partin L, Revette A, Bernacki R, Wolfe J. Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness. Journal of Pediatrics. 2021;229:247-258.e8. doi:10.1016/j.jpeds.2020.09.030
126. Doherty M, Gujral P, Frenette M, Lusney N, van Breemen C. The Pediatric Serious Illness Conversation Program: Understanding challenges and experiences for clinicians after advance care planning training. Palliat Support Care. 2024;22(5):1048-1055. doi:10.1017/S1478951523000500
127. Tricco AC, Lillie E, Zarin W, et al. PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med. 2018;169(7):467-473. doi:10.7326/M18-0850
128. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007;19(6):349-357. doi:10.1093/intqhc/mzm042
129. Stenmarker M, Hallberg U, Palm K. Being a Messenger of Life-Threatening Conditions : Experiences of Pediatric. Pediatr Blood Cancer. 2010;(May):478-484. doi:10.1002/pbc
130. Porter AS, Woods C, Stall M, et al. Oncologist approaches to communicating uncertain disease status in pediatric cancer: a qualitative study. BMC Cancer. 2022;22(1). doi:10.1186/s12885-022-10190-6
131. Johnston DL, Appleby W. Pediatric oncologists opinions on breaking bad news. Pediatr Blood Cancer. 2011;56(3):506-506. doi:10.1002/pbc.22896
132. Hrdličková L, Kleinová GK, Nováková L, et al. Five years of experience in providing paediatric palliative care in hospital setting. Cesk Pediatr. 2023;78(1):44-47. doi:10.55095/CSPediatrie2023/008
133. Hrdličková L, Kleinová GK, Nováková L, Makešová D, Doušová T. The role of paediatric supportive care team in the development of hospital palliative care at the University Hospital Motol. Cesk Pediatr. 2023;78(1):40-43. doi:10.55095/CSPediatrie2023/007
134. van der Velden NCA, Smets EMA, van Vliet LM, Brom L, van Laarhoven HWM, Henselmans I. Effects of prognostic communication strategies on emotions, coping, and appreciation of consultations: An experimental study in advanced cancer. Palliat Support Care. Published online 2024. doi:10.1017/S1478951524000403
135. Westendorp J, Geerse OP, van der Lee ML, et al. Harmful communication behaviors in cancer care: A systematic review of patients and family caregivers perspectives. Psychooncology. 2023;32(12):1827-1838. doi:10.1002/pon.6247
136. Westendorp J, Evers AWM, Stouthard JML, et al. Mind your words: Oncologists’ communication that potentially harms patients with advanced cancer: A survey on patient perspectives. Cancer. 2022;128(5):1133-1140. doi:10.1002/cncr.34018
137. Zhukovsky DS, Herzog CE, Kaur G, Palmer JL, Bruera E. The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer. J Palliat Med. 2009;12(4):343-349. doi:10.1089/jpm.2008.0152
138. Stubbe DE. Engaging the “Difficult” Patient: Strengthening Empathic Communication Skills. Focus (Madison). 2022;20(4):413-415. doi:10.1176/appi.focus.20220067
139. Hull K Sharon BK. How to Manage Difficult Patient Encounters. Fam Pract Manag. 2007;(14(6)):30-34.
140. Knesper DJ. My Favorite Tips for Engaging the Difficult Patient on Consultation-Liaison Psychiatry Services. Psychiatric Clinics of North America. 2007;30(2):245-252. doi:10.1016/j.psc.2007.01.009
141. Brouwer MA, Maeckelberghe ELM, Van Der Heide A, Hein IM, Verhagen EAAE. Breaking bad news: What parents would like you to know. Arch Dis Child. 2021;106(3):276-281. doi:10.1136/archdischild-2019-318398
142. Humphrey C, Mehler S, O’Bryan S, et al. Language to Support Dignity for Children With Advanced Cancer and Their Families. Pediatrics. 2024;154(2). doi:10.1542/peds.2023-065559
143. Boland L, Graham ID, Légaré F, et al. Barriers and facilitators of pediatric shared decision-making: A systematic review. Implementation Science. 2019;14(1). doi:10.1186/s13012-018-0851-5
144. Gabe J, Olumide G, Bury M. ‘It takes three to tango’: Soc Sci Med. 2004;59(5):1071-1079. doi:10.1016/j.socscimed.2003.09.035
145. Krizova E, Simek J. Theory and practice of informed consent in the Czech Republic. J Med Ethics. 2007;33(5):273-277. doi:10.1136/jme.2005.015164
146. Rapoport A. Similarities and differences in Czech and Canadian pediatric palliative care. 2021;2(1):49-51.
147. Dobrozsi S, Trowbridge A, Mack JW, Rosenberg AR. Effective Communication for Newly Diagnosed Pediatric Patients With Cancer: Considerations for the Patients, Family Members, Providers, and Multidisciplinary Team. Published online 2019. doi:10.1200/EDBK_
148. Rosenberg AR, Wolfe J, Wiener L, Lyon M, Feudtner C. Ethics, Emotions, and the Skills of Talking About Progressing Disease With Terminally Ill Adolescents A Review. Published online 2016:1-8. doi:10.1001/jamapediatrics.2016.2142
149. Bradford N, Rolfe M, Ekberg S, et al. Family meetings in paediatric palliative care: An integrative review. BMJ Support Palliat Care. 2021;11(3):288-295. doi:10.1136/bmjspcare-2020-002333
150. Quill TE, Abernethy AP. Generalist plus Specialist Palliative Care — Creating a More Sustainable Model. New England Journal of Medicine. 2013;368(13):1173-1175. doi:10.1056/NEJMp1215620
151. Rucker B, Browning DM. Practicing End-of-Life Conversations: Physician Communication Training Program in Palliative Care. J Soc Work End Life Palliat Care. 2015;11(2):132-146. doi:10.1080/15524256.2015.1074140
152. Monden KR, Gentry L, Cox TR. Delivering bad news to patients. Proc (Bayl Univ Med Cent). 2016;29(1):101-102. http://www.ncbi.nlm.nih.gov/pubmed/26722188%5Cnhttp://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=PMC4677873
153. Boissy A, Windover AK, Bokar D, et al. Communication Skills Training for Physicians Improves Patient Satisfaction. J Gen Intern Med. 2016;31(7):755-761. doi:10.1007/s11606-016-3597-2
154. Chung HO, Oczkowski SJW, Hanvey L, Mbuagbaw L, You JJ. Educational interventions to train healthcare professionals in end-of-life communication: A systematic review and meta-analysis. BMC Med Educ. 2016;16(1). doi:10.1186/s12909-016-0653-x
155. Mansoursamaei M, Ghanbari Jolfaei A, Zandi M, Mansoursamaei A, Salehian R. Self-assessment of residents in breaking bad news; skills and barriers. BMC Med Educ. 2023;23(1). doi:10.1186/s12909-023-04720-4
156. Back AL, Arnold RM, Baile WF, et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med. 2007;167(5):453-460. doi:10.1001/archinte.167.5.453
157. Harrison ME, Walling A. What do we know about giving bad news? A review. Clin Pediatr (Phila). 2010;49(7):619-626. doi:10.1177/0009922810361380
158. Kersun L, Gyi L, Morrison WE. Training in Difficult Conversations : A National Survey of Pediatric Hematology – Oncology and Pediatric Critical Care Physicians. J Palliat Med. 2009;12(6).
159. Rider EA, Volkan K, Hafler JP. Pediatric residents’ perceptions of communication competencies: Implications for teaching. Med Teach. 2008;30(7). doi:10.1080/01421590802208842
160. Matthews T, Baken D, Ross K, Ogilvie E, Kent L. The experiences of patients and their family members when receiving bad news about cancer: A qualitative meta-synthesis. Psychooncology. 2019;28(12):2286-2294. doi:10.1002/pon.5241
161. Fernández-Olano C, Montoya-Fernandez J, Salinas-Sánchez A. Impact of clinical interview training on the empathy level of medical students and medical residents. Med Teach. 2008;30(3):322-324. doi:10.1080/01421590701802299
162. Bradford N, Herbert A, Mott C, Armfield N, Young J, Smith A. Components and principles of a pediatric palliative care consultation: Results of a delphi study. J Palliat Med. 2014;17(11):1206-1213. doi:10.1089/jpm.2014.0121
163. Loeffen EAH, Tissing WJE, Schuiling-Otten MA, De Kruiff CC, Kremer LCM, Verhagen AAE. Individualised advance care planning in children with life-limiting conditions. Arch Dis Child. 2018;103(5):480-485. doi:10.1136/ARCHDISCHILD-2017-312731
164. Sisk B, Baker JN. A model of interpersonal trust, credibility, and relationship maintenance. Pediatrics. 2019;144(6). doi:10.1542/peds.2019-1319
165. Clarke JN, Fletcher P. Communication Issues Faced by Parents Who have a Child Diagnosed with Cancer. Journal of Pediatric Oncology Nursing. 2003;20(4):175-191. doi:10.1177/1043454203254040
166. Lolonga D, Pondy A, Guédénon KM, et al. L’annonce du diagnostic dans les unités d’oncologie pédiatrique africaines. Revue d’Oncologie Hématologie Pédiatrique. 2015;3(1):29-36. doi:10.1016/j.oncohp.2014.12.001
167. Barbora Nebáznivá M, Hrdličková ML. Problematika Poskytování Dětské Paliativní Péče Rodinám Přesídleným z Území Zasažených Válečným Konfliktem The Issue of Providing Children’s Palliative Care to Forced Migrants Coming from Conflict-Affected Areas.
168. Gilligan T, Coyle N, Frankel RM, et al. JOURNAL OF CLINICAL ONCOLOGY Patient-Clinician Communication: American Society of Clinical Oncology Consensus Guideline. J Clin Oncol. 2017;35:3618-3632. doi:10.1200/JCO
169. Wiener L, Kazak AE, Noll RB, Patenaude AF, Kupst MJ. Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue. Pediatr Blood Cancer. 2015;62:S419-S424. doi:10.1002/pbc.25675
170. Snaman J, Mccarthy S, Wiener L, Wolfe J. Pediatric Palliative Care in Oncology. Published online 2020. doi:10.1200/JCO.18

Předběžná náplň práce

Hlavním cílem práce bude identifikovat faktory, které ovlivňují sdělování závažné zprávy v kontextu dětské onkologie, a přinést návrh teoretického modelu pro sdělování závažné zprávy, který by reflektoval předpoklady a bariéry na straně rodinných příslušníků, lékařů i pacientů samotných. Záměrem bude vytvořit model využitelný pro formulaci evidence-based doporučení pro sdělování závažných zpráv v kontextu dětské medicíny.
Cíl 1: Identifikovat faktory, které ovlivňují sdělování závažné zprávy z perspektivy dětských pacientů, jejich rodinných příslušníků a lékařů.
K naplnění cíle bude využita metoda systematické přehledové studie.
Cíl 2: Zmapovat perspektivu českých lékařů a rodičů při sdělování závažné zprávy a jejich zkušenost s účastí na paliativní konzultaci.
K naplnění cíle bude využita metoda kvalitativního výzkumu.
Cíl 3: Zmapovat praxi dětských lékařů různých odborností při sdělování závažné zprávy a identifikovat hlavní bariéry, které efektivní komunikaci v dětské medicíně znesnadňují.
H1: Více než 50 % lékařů považuje sdělování závažné zprávy za náročné.
H2: Lékaři mají nedostatek času pro sdělení závažné zprávy.
Zhodnocení hypotézy č. 1 a 2 proběhne formou průřezového dotazníkového šetření mezi lékaři vybraných specializací ve Fakultní nemocnicí v Motole.
Cíl 4: Vytvoření teoretického modelu pro sdělování závažných zpráv.
K vytvoření teoretického modelu budou využity kvantitativní i kvalitativní poznatky z předchozích studií.

Předběžná náplň práce v anglickém jazyce

The main aim of this thesis will be to identify factors that influence the delivery of serious news in paediatric oncology and to propose a theoretical model for the communication of serious news that reflects the perspectives and barriers of family members, physicians and patients themselves. I intent to develop a theoretical model that can be used to prepare evidence-based guidelines for delivering serious news in paediatric medicine.
Objective 1: To identify factors that influence the delivery of serious news from the perspective of pediatric patients, their family members, and physicians.
A scoping review study method will be used to accomplish this objective.
Aim 2: To map the perspective of Czech physicians and parents on the communication of serious news and their experience of attending palliative consultation.
A qualitative research method will be used to meet the objective.
Objective 3: To map the practice of paediatricians of different specialties in communicating serious news and to identify the main barriers that hinder effective communication in paediatric medicine.
H1: More than 50% of physicians find communicating a serious message challenging.
H2: Physicians have insufficient time to communicate a serious message.
The evaluation of hypotheses 1 and 2 will take place in the form of a cross-sectional questionnaire survey among physicians of selected specialties at Motol University Hospital.
Objective 4: To develop a theoretical model for breaking serious news.
Quantitative and qualitative findings from previous studies will be used to develop the theoretical model.