Comunicación de malas noticias en pediatría: revisión integrativa

las evidencias de los 40 estudios se organizaron según los elementos de la comunicación: emisor (familiar y/o profesional), receptor (familiar y/o niño), mensaje (noticias dolorosas, malas o difíciles sobre el diagnóstico/pronóstico; de manera empática, honesta, objetiva, esperanzadora y disponible), canal (materiales, calidad, cantidad y rapidez), contexto y efectos (cambios sociales y emocionales), ruido (sentimientos y lenguaje) y fracaso (silencio e información engañosa).

Conclusiones:

es necesario preparar a la institución y al equipo, así como a la familia y al niño, para promover la corresponsabilidad, amenizar el sufrimiento y las interferencias en la comunicación y evitar los fracasos, reconociendo el derecho del niño de saber sobre su condición.

Descriptores:
Revelación de la Verdad; Comunicación en Salud; Diagnóstico; Salud del Niño; Pediatría

ID	Year/Country	Objective	Study Design	EL
⁽ ¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ⁾	2017/ Brazil	To understand the management of emotions involved in the relationship between doctors, mothers, and children in the experience of sharing difficult news in a pediatric and hematological oncology service.	Descriptive qualitative. P: 9 doctors and 5 mothers.	2^* * meaning;
⁽ ¹²12 Parsons SK, Saiki-Craighill S, Mayer DK, Sullivan AM, Jeruss S, Terrin N, et al. Telling children and adolescent about their cancer diagnosis: cross-cultural comparisons between pediatric oncologists in the US and Japan. Psycho-Oncol[Internet]. 2007 [cited 2018 Jan 10];16(1):60-8. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16874746 https://www.ncbi.nlm.nih.gov/pubmed/1687... ⁾	2007/ USA and Japan	To describe patterns of communication at diagnosis between pediatric oncologists and children with cancer and to compare cultural differences in these practices in the US and Japan.	Cross-sectional quantitative. P: 350 US and 362 Japanese pediatric oncologists.	4^* * meaning;
⁽ ¹³13 Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol [Internet]. 2010 [cited 2017 Jul 16];74(3):265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20042242 https://www.ncbi.nlm.nih.gov/pubmed/2004... ⁾	2010/ Israel	To assess parents' experiences with receiving the bad news of the detection of their child's hearing loss.	Descriptive qualitative. P: 14 families/parents.	2^* * meaning;
⁽ ¹⁴14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... ⁾	2003/ Australia	To explore parents' experience of being told that their child had a condition, such as bone dysplasia, that would result in significant short stature.	Descriptive qualitative. P: 11 family members.	2^* * meaning;
⁽ ¹⁵15 Stenmarker M, Hallberg U, Palmérus K, Márky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr Blood Cancer [Internet]. 2010 [cited 2017 Jun 18];55(3):478-84. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20658619 https://www.ncbi.nlm.nih.gov/pubmed/2065... ⁾	2010/ Sweden	To describe the main concern of physicians facing malignant disorders, psychosocial issues and existential provocation; and strategies for handling these challenges.	Qualitative, Grounded Theory. P: 10 physicians.	2^* * meaning;
⁽ ¹⁶16 Finan C, Nasr SZ, Rothwell E, Tarini BA. Primary care providers’experiences notifying parents of cystic fibrosis newborn screening results. Clin Pediatr (Phila) [Internet]. 2014 [cited 2018 Jan 16];54(1):67-75. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25104730 https://www.ncbi.nlm.nih.gov/pubmed/2510... ⁾	2014/ USA	To examine primary care provider experiences with the initial parental disclosure of cystic fibrosis newborn screening results in order to identify methods to improve parent-provider communication during the process.	Descriptive qualitative. P: 10 primary care providers.	2^* * meaning;
⁽ ¹⁷17 Aein F, Delaram M. Giving bad news: a qualitative research exploration. Iran Red Crescent Med J [Internet]. 2014 [cited 2018 Jun 16];16(6):e8197. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102999/ https://www.ncbi.nlm.nih.gov/pmc/article... ⁾	2014/ Iran	To explore Iranian mothers' experiences to receive bad news about childhood cancer and to summarize suggestions for improving the delivery of bad news by healthcare providers.	Descriptive qualitative. P: 14 mothers.	2^* * meaning;
⁽ ¹⁸18 Hasnat MJ, Graves P. Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. J Paediatr Child Health [Internet]. 2000 [cited 2018 Jan16];36(1):32-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10723688 https://www.ncbi.nlm.nih.gov/pubmed/1072... ⁾	2000/ Australia	To investigate the level of parent satisfaction with the first communication of a diagnosis of developmental disability in their child and the determinants of this satisfaction.	Descriptive qualitative. P: 23 parents.	2^* * meaning;
⁽ ¹⁹19 Parker TM, Johnston DL. Parental perceptions of being told their child has cancer. Pediatr Blood Cancer [Internet]. 2008 [cited 2017 Jan 26];51(4):531-4. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18623217 https://www.ncbi.nlm.nih.gov/pubmed/1862... ⁾	2008/ Canada	To assess how well parents recall discussing the diagnosis of cancer and to summarize suggestions for improvement.	Cross-sectional quantitative. P: 116 parents.	4^* * meaning;
⁽ ²⁰20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... ⁾	2010/ Uganda	To explore the challenges of providing HIV counselling and testing services to children in Uganda.	Descriptive qualitative. P: 60 health workers.	2^* * meaning;
⁽ ²¹21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... ⁾	1994/ Australia	To assess the receptiveness of parents to information given about their child's life threatening illness.	Descriptive qualitative. P: 25 parents.	2^* * meaning;
⁽ ²²22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ⁾	2000/ USA	To report on parental response to the disclosure and realization that their child has neurofibromatosis 1.	Descriptive qualitative. P: 18 family members.	2^* * meaning;
⁽ ²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ⁾	2015/ Malawi	To explore the experiences of children (10-14 years) living with HIV following the diagnosis disclosure.	Descriptive qualitative. P: 10 children and 7 caregivers.	2^* * meaning;
⁽ ²⁴24 Gomes GC, Xavier DM, Mota MS, Salvador MS, Silveira RS, Barlem ELD. Dando notícias difíceis à família da criança em situação grave ou em processo de terminalidade. Rev Enferm UERJ [Internet]. 2014 [cited 2017 Jun 26];22(3):347-52. Available from: https://pesquisa.bvsalud.org/portal/resource/pt/bde-27990 https://pesquisa.bvsalud.org/portal/reso... ⁾	2014/ Brazil	To learn the experiences of nurses in communicating difficult news to families of hospitalized children in serious condition or process of terminality.	Descriptive qualitative. P: 9 nursing team professionals.	2^* * meaning;
⁽ ²⁵25 Nzota MS, Matovu JKB, Draper HR, Kisa R, Kiwanuka SN. Determinats and processo f HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: cross-sectional study. BMC Pediatrics [Internet]. 2015 [cited 2018 Jan 13];15:81. Available from: https://www.springermedizin.de/determinants-and-processes-of-hiv-status-disclosure-to-hiv-infec/9746990 https://www.springermedizin.de/determina... ⁾	2015/ Tanzania	To assess the determinants and processes of HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at the Baylor College of Medicine Children's Foundation Tanzania, Centre of Excellence in Mbeya.	Cross-sectional quantitative. P: 334 caregivers.	4^* * meaning;
⁽ ²⁶26 Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children is South Africa: focus groups for intervention development. Vulnerable Child Youth Stud [Internet]. 2012 [cited 2017 Dec 12];7(1):47-54. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22468145 https://www.ncbi.nlm.nih.gov/pubmed/2246... ⁾	2012/ South Africa	To identify beliefs about disclosing HIV diagnosis to HIV-infected children among caregivers, health-care providers, and HIV-positive children who knew their diagnosis.	Descriptive qualitative. P: 51 caregivers, 24 health-care providers and 5 children.	4^* * meaning;
⁽ ²⁷27 Clarke SA, Davies H, Jenney M, Glaser A, Eiser C. Parental communication and children’s behaviour following diagnosis of childhood leukaemia. Psycho-Oncol [Internet]. 2005 [cited 2018 Jul 13]14(4):274-81. Available from: https://www.ncbi.nlm.nih.gov/pubmed/15386768 https://www.ncbi.nlm.nih.gov/pubmed/1538... ⁾	2005/ United Kingdom	To identify the child's reactions and behavior following diagnosis, the parents' views about what to tell their child and factors influencing parents' communication with the child.	Descriptive qualitative. P: 55 parents.	2^* * meaning;
⁽ ²⁸28 Badarau DO, De Clercq E, Wangmo T, Dragomir M, Miron I, Kühne T, et al. Cancer care in Romania: challenges and pitfalls of children’s and a adolescent’s multifaceted involvement. J Med Ethics [Internet]. 2016 [cited 2018 Jan 13];42(12):757-61. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27697792 https://www.ncbi.nlm.nih.gov/pubmed/2769... ⁾	2016/ Romania	To explore children's involvement from the perspective of parents and oncologists.	Descriptive qualitative. P: 18 caregivers and 10 physicians.	2^* * meaning;
⁽ ²⁹29 Goodwin J, Schoch K, Shashi V, Hooper SR, Morad O, Zalevsky M, et al. A tale worth telling: the impacto f the diagnosis experience on disclosure of genetic disorders. J Intellect Disabil Res [Internet]. 2015 [cited 2018 Jan 18];59(5):474-86. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25059276 https://www.ncbi.nlm.nih.gov/pubmed/2505... ⁾	2015/ Australia and Israel	To examine the relationship between the diagnosis experience and the disclosure experience for parents of children with developmental disorders of a genetic etiology known as 22q11.2 deletion syndrome.	Cross-sectional quantitative. P: 559 parents and caregivers.	4^* * meaning;
⁽ ³⁰30 Arabiat DH, Alqaissi NM, Hamdan-Mansour AM. Children’s knowledge of cancer diagnosis and treatment: jordanian mothers’ perceptions and satisfaction with the process. Int Nurs Rev [Internet]. 2011 [cited 2018 Jun 13];58(4):443-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22092322 https://www.ncbi.nlm.nih.gov/pubmed/2209... ⁾	2011/ Jordan	To examine mothers' accounts of communication about cancer diagnosis to their children, how much children knew about their illnesses and how satisfied the mothers were with the method they used in communicating the diagnosis.	Descriptive qualitative. P: 51 mothers.	4^* * meaning;
⁽ ³¹31 Al-Abdi SY, Al-Ali EA, Daheer MH, Al-Saleh YM, Al-Qurashi KH, Al-Aamri MA. Saudi mothers’ preferences about breaking bad news concerning newborns: a structured verbal questionnaire. BMC Medical Ethics [Internet]. 2011 [cited 2018 Dec 13];12:15. Available from: https://www.ncbi.nlm.nih.gov/pubmed/21861876 https://www.ncbi.nlm.nih.gov/pubmed/2186... ⁾	2011/ Saudi Arabia	To elicit the preferences of Saudi mothers about breaking bad news concerning newborns.	Randomized clinical trial. P: 402 mothers.	4^* * meaning;
⁽ ³²32 Afonso SBC, Mitre RMA. Noticias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística. Ciên Saúde Coletiva [Internet]. 2013 [cited 2018 Jan 13];18(9):2605-13. Available from: www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf... ⁾	2013/ Brazil	To study the meanings that difficult news assumes when transmitted by health professionals to relatives of young cystic fibrosis patients.	Descriptive qualitative. P: 10 family members.	2^* * meaning;
⁽ ³³33 Boon-Yasidhi V, Kottapat U, Durier Y, Plipat N, Phongsamart W, Chokephaibulkit K, et al. Diagnosis disclosure in HIV-infected Thai children. J Med Assoc Thai [Internet]. 2005 [cited 2018 Jan 26];88(8):S100-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16858851 https://www.ncbi.nlm.nih.gov/pubmed/1685... ⁾	2005 Thailand	To assess diagnosis disclosure status of perinatally acquired HIV-infected Thai children.	Cross-sectional quantitative. P: 96 primary caregivers	4^* * meaning;
⁽ ³⁴34 Jalmsell L, Lövgren M, Kreicbergs U, Henter JI, Frost BM. Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr [Internet]. 2016 [cited 2018 Jan 16];105(9):1094-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27272911 https://www.ncbi.nlm.nih.gov/pubmed/2727... ⁾	2016/ Sweden	To explore how children with cancer want to receive bad news about their disease, such as when no more treatment options are available.	Descriptive qualitative. P: 10 children	2^* * meaning;
⁽ ³⁵35 Trejos AM, Reyes L, Bahamon MJ, Alarcón Y, Gaviria G. Effects in the adherence treatment and psychological adjustment after the disclosure of HIV/AIDS diagnosis with the "DIRE" clinical model in Colombian children under 17. Rev Child Infectol. 2015;32(4):408-15. doi: 10.4067/S0716-10182015000500007 https://doi.org/10.4067/S0716-1018201500... ⁾	2015/ Colombia	To evaluate the effects of the "DIRE" clinical model of disclosing the diagnosis of HIV in children under the age of 17.	Validation study. P: 41 health professionals, 31 caregivers and 33 children.	2^* * meaning;
⁽ ³⁶36 Last BF, van Veldhuizen AMH. Information about diagnosis and prognosis related to anxiety and depression in children with cancer aged 8-16 years. EJC. 1996;32(2):290-4. Available from: doi: 10.1016/0959-8049(95)00576-5 https://doi.org/10.1016/0959-8049(95)005... ⁾	1996/ Netherlands	To test the hypothesis that being openly informed about the diagnosis and prognosis benefits the emotional well-being of children with cancer.	Cross-sectional quantitative. P: 56 children and their parents.	6^† † treatment.
⁽ ³⁷37 Waxler JL, Cherniske EM, Dieter K, Herd P, Pober BR. Hearing from parents: the impacto f receiving the diagnosis of Williams syndrome in their child. Am J Med Genet A [Internet]. 2013 [cited 2018 Jan 19];161A(3):534-41. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23401422 https://www.ncbi.nlm.nih.gov/pubmed/2340... ⁾	2013/ USA	To learn about the experience of receiving a diagnosis from parents of children with Williams syndrome.	Descriptive qualitative. P: 600 families.	2^* * meaning;
⁽ ³⁸38 Thorne C, Newell ML, Peckham CS. Disclosure of diagnosis and planning for the future in HIV-affected families in Europe. Child Care Health Dev. 2000;26(1):29-40. doi: 10.1046/j.1365-2214.2000.00128.x https://doi.org/10.1046/j.1365-2214.2000... ⁾	2000/ Germany, Italy, Netherlands, Portugal, Spain, Switzerland, United Kingdom	To describe the extent to which disclosure of infection status and planning for the future occurs in families with children affected by HIV in seven European countries.	Cross-sectional quantitative. P: 182 family members.	4^* * meaning;
⁽ ³⁹39 Muñoz Sastre MT, Sorum PC, Mullet E. Lay people’s and health professionals’views about breaking bad news to children. Child Care Health Dev [Internet]. 2014 [cited 2018 Jan 26];40(1):106-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22928950 https://www.ncbi.nlm.nih.gov/pubmed/2292... ⁾	2014/ France	To explore lay people's and professionals' views on breaking bad news to children.	Cross-sectional quantitative. P: 170 lay persons, 33 nurses and 6 physicians.	4^* * meaning;
⁽ ⁴⁰40 Vaz LM, Eng E, Maman S, Tshikandu T, Behets F. Telling children they have HIV: lessons learned from findings of a qualitative study in Sub-Saharan Africa. AIDS Patients Care STDS [Internet]. 2010 [cited 2018 Jun 12];24(4):247-56. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20397899 https://www.ncbi.nlm.nih.gov/pubmed/2039... ⁾	2010/ Democratic Republic of Congo	To explore the events before, during, and after disclosure to generate a narrative of Congolese children's experiences with being told their HIV status.	Descriptive qualitative. P: 8 families (7 children and 9 caregivers).	2^* * meaning;
⁽ ⁴¹41 Orioles A, Miller VA, Kersun LS, Ingram M, Morrison WE. “To be a phenomenal doctor you have to be the whole package”: physicians’ interpersonal behaviors during difficult conversations in pediatrics. J Palliat Med [Internet]. 2013 [cited 2018 Jun 12];16(8):929-33. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23808643 https://www.ncbi.nlm.nih.gov/pubmed/2380... ⁾	2013/ USA	To assess parental perceptions of physicians' interpersonal behaviors and their role in communication of bad news.	Descriptive qualitative. P: 13 parents.	2^* * meaning;
⁽ ⁴²42 Abbott M, Bernard P, Forge J. Communicating a diagnosis of autism spectrum disorder-a qualitative study of parents’ experiences. Clin Child Psychol Psychiatr [Internet]. 2012 [cited 2018 Jan 26];18(3):370-82. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22904114 https://www.ncbi.nlm.nih.gov/pubmed/2290... ⁾	2012/ England	To explore the experiences of the 'feedback session' with nine sets of parents in a community Child and Adolescent Mental Health Service in North East England.	Descriptive qualitative. P: 9 families.	2^* * meaning;
⁽ ⁴³43 Harnett A, Tierney E, Guerin S. Convention of hope-communicating positive, realistic messages to families at the time of a child’s diagnosis with disabilities. British J Learn Disabil. 2009;37:257-64. doi: 10.1111/j.1468-3156.2009.00580.x https://doi.org/10.1111/j.1468-3156.2009... ⁾	2009/ Ireland	To describe the way that parents are told that their child has disabilities.	Mixed method. P: 1588 professionals and 584 families.	4^* * meaning;
⁽ ⁴⁴44 Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. Communication about prognosis between parents and physicians of children with cancer: parents preferences and the impact of prognostic information. J Clin Oncol [Internet]. 2006 [cited 2017 Jun 26];24(33):5265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/17114660 https://www.ncbi.nlm.nih.gov/pubmed/1711... ⁾	2006/ USA	To determine parent preferences for prognostic information about their children with cancer and the results of receiving such information.	Cross-sectional quantitative. P: 194 parents.	4^* * meaning;
⁽ ⁴⁵45 Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros [Internet]. 2015 [cited 2018 Jun 16];14(4):540-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25563520 https://www.ncbi.nlm.nih.gov/pubmed/2556... ⁾	2015/ Belgium	To explore how parents recall circumstances of the cystic fibrosis diagnosis and the information they received; and to investigate their current coping styles.	Descriptive qualitative. P: 38 parents.	2^* * meaning;
⁽ ⁴⁶46 Abdelmoktader AM, Abd Elhamed KA. Egyptian mothers’ preferences regarding how physicians break bad news about their child’s disability: A structured verbal questionnaire. BMC Med Ethics [Internet]. 2012 [cited 2018 Jan 16];13:14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22747832 https://www.ncbi.nlm.nih.gov/pubmed/2274... ⁾	2012/ Egypt	To elicit Egyptian mothers' preferences for how to be told the bad news about their child's disability.	Cross-sectional quantitative. P: 100 mothers.	4^* * meaning;
⁽ ⁴⁷47 Young B, Ward J, Salmon P, Gravenhorst K, Hill J, Eden T. Parents’ experiences of their children’s presence in discussions with physicians about leukemia. Pediatr [Internet]. 2011 [cited 2018 Jun 25];127(5):1230-8. Available from: pediatrics.aappublications.org/content/127/5/e1230 pediatrics.aappublications.org/content/1... ⁾	2011/ United Kingdom	To examine parents' views regarding their preadolescent child's presence during discussions about serious illnesses.	Descriptive qualitative. P: 53 parents.	2^* * meaning;
⁽ ⁴⁸48 Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, et al. Parents’s perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med [Internet]. 2008 [cited 2018 Jun 25];9(1):2-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18477906 https://www.ncbi.nlm.nih.gov/pubmed/1847... ⁾	2008/ USA	To describe parents' perceptions of their conversations with physicians regarding their child's terminal illness and death in the pediatric intensive care unit.	Descriptive qualitative. P: 56 parents.	2^* * meaning;
⁽ ⁴⁹49 Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care [Internet]. 2007 [cited 2017 Jan 13];5(4):355-65. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18044413 https://www.ncbi.nlm.nih.gov/pubmed/1804... ⁾	2007/ USA	To identify the aspects of physician communication that children with life-limiting illnesses and their parents perceived to be facilitative or obstructive in pediatric palliative care.	Descriptive qualitative. P: 20 parents.	2^* * meaning;
⁽ ⁵⁰50 Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child Care Health Dev [Internet]. 2002 [cited 2017 Jan 15];28(1):65-71. Available from: https://www.ncbi.nlm.nih.gov/pubmed/11856189 https://www.ncbi.nlm.nih.gov/pubmed/1185... ⁾	2002/ United Kingdom	To describe how findings about four preschool children, with difficulties suspected to lie within the autistic spectrum, were negotiated with parents.	Descriptive qualitative. P: 2 multiprofessional groups.	2^* * meaning;

Elements		Professionals	Family	Children
Context		work culture⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^-¹²12 Parsons SK, Saiki-Craighill S, Mayer DK, Sullivan AM, Jeruss S, Terrin N, et al. Telling children and adolescent about their cancer diagnosis: cross-cultural comparisons between pediatric oncologists in the US and Japan. Psycho-Oncol[Internet]. 2007 [cited 2018 Jan 10];16(1):60-8. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16874746 https://www.ncbi.nlm.nih.gov/pubmed/1687... ⁾ privacy⁽¹³13 Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol [Internet]. 2010 [cited 2017 Jul 16];74(3):265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20042242 https://www.ncbi.nlm.nih.gov/pubmed/2004... ^-¹⁴14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... ⁾ training⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... 12 Parsons SK, Saiki-Craighill S, Mayer DK, Sullivan AM, Jeruss S, Terrin N, et al. Telling children and adolescent about their cancer diagnosis: cross-cultural comparisons between pediatric oncologists in the US and Japan. Psycho-Oncol[Internet]. 2007 [cited 2018 Jan 10];16(1):60-8. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16874746 https://www.ncbi.nlm.nih.gov/pubmed/1687... 13 Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol [Internet]. 2010 [cited 2017 Jul 16];74(3):265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20042242 https://www.ncbi.nlm.nih.gov/pubmed/2004... 14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... 15 Stenmarker M, Hallberg U, Palmérus K, Márky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr Blood Cancer [Internet]. 2010 [cited 2017 Jun 18];55(3):478-84. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20658619 https://www.ncbi.nlm.nih.gov/pubmed/2065... 16 Finan C, Nasr SZ, Rothwell E, Tarini BA. Primary care providers’experiences notifying parents of cystic fibrosis newborn screening results. Clin Pediatr (Phila) [Internet]. 2014 [cited 2018 Jan 16];54(1):67-75. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25104730 https://www.ncbi.nlm.nih.gov/pubmed/2510... 17 Aein F, Delaram M. Giving bad news: a qualitative research exploration. Iran Red Crescent Med J [Internet]. 2014 [cited 2018 Jun 16];16(6):e8197. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102999/ https://www.ncbi.nlm.nih.gov/pmc/article... 18 Hasnat MJ, Graves P. Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. J Paediatr Child Health [Internet]. 2000 [cited 2018 Jan16];36(1):32-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10723688 https://www.ncbi.nlm.nih.gov/pubmed/1072... 19 Parker TM, Johnston DL. Parental perceptions of being told their child has cancer. Pediatr Blood Cancer [Internet]. 2008 [cited 2017 Jan 26];51(4):531-4. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18623217 https://www.ncbi.nlm.nih.gov/pubmed/1862... ^-²⁰20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... ⁾	educational level⁽¹⁶16 Finan C, Nasr SZ, Rothwell E, Tarini BA. Primary care providers’experiences notifying parents of cystic fibrosis newborn screening results. Clin Pediatr (Phila) [Internet]. 2014 [cited 2018 Jan 16];54(1):67-75. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25104730 https://www.ncbi.nlm.nih.gov/pubmed/2510... ^,²¹21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... 22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... 23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... 24 Gomes GC, Xavier DM, Mota MS, Salvador MS, Silveira RS, Barlem ELD. Dando notícias difíceis à família da criança em situação grave ou em processo de terminalidade. Rev Enferm UERJ [Internet]. 2014 [cited 2017 Jun 26];22(3):347-52. Available from: https://pesquisa.bvsalud.org/portal/resource/pt/bde-27990 https://pesquisa.bvsalud.org/portal/reso... 25 Nzota MS, Matovu JKB, Draper HR, Kisa R, Kiwanuka SN. Determinats and processo f HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: cross-sectional study. BMC Pediatrics [Internet]. 2015 [cited 2018 Jan 13];15:81. Available from: https://www.springermedizin.de/determinants-and-processes-of-hiv-status-disclosure-to-hiv-infec/9746990 https://www.springermedizin.de/determina... 26 Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children is South Africa: focus groups for intervention development. Vulnerable Child Youth Stud [Internet]. 2012 [cited 2017 Dec 12];7(1):47-54. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22468145 https://www.ncbi.nlm.nih.gov/pubmed/2246... 27 Clarke SA, Davies H, Jenney M, Glaser A, Eiser C. Parental communication and children’s behaviour following diagnosis of childhood leukaemia. Psycho-Oncol [Internet]. 2005 [cited 2018 Jul 13]14(4):274-81. Available from: https://www.ncbi.nlm.nih.gov/pubmed/15386768 https://www.ncbi.nlm.nih.gov/pubmed/1538... ^-²⁸28 Badarau DO, De Clercq E, Wangmo T, Dragomir M, Miron I, Kühne T, et al. Cancer care in Romania: challenges and pitfalls of children’s and a adolescent’s multifaceted involvement. J Med Ethics [Internet]. 2016 [cited 2018 Jan 13];42(12):757-61. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27697792 https://www.ncbi.nlm.nih.gov/pubmed/2769... ⁾ family preparation⁽¹⁴14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... ^,²²22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ^-²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^,²⁵25 Nzota MS, Matovu JKB, Draper HR, Kisa R, Kiwanuka SN. Determinats and processo f HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: cross-sectional study. BMC Pediatrics [Internet]. 2015 [cited 2018 Jan 13];15:81. Available from: https://www.springermedizin.de/determinants-and-processes-of-hiv-status-disclosure-to-hiv-infec/9746990 https://www.springermedizin.de/determina... ^-²⁶26 Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children is South Africa: focus groups for intervention development. Vulnerable Child Youth Stud [Internet]. 2012 [cited 2017 Dec 12];7(1):47-54. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22468145 https://www.ncbi.nlm.nih.gov/pubmed/2246... ^,²⁹29 Goodwin J, Schoch K, Shashi V, Hooper SR, Morad O, Zalevsky M, et al. A tale worth telling: the impacto f the diagnosis experience on disclosure of genetic disorders. J Intellect Disabil Res [Internet]. 2015 [cited 2018 Jan 18];59(5):474-86. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25059276 https://www.ncbi.nlm.nih.gov/pubmed/2505... ^-³⁰30 Arabiat DH, Alqaissi NM, Hamdan-Mansour AM. Children’s knowledge of cancer diagnosis and treatment: jordanian mothers’ perceptions and satisfaction with the process. Int Nurs Rev [Internet]. 2011 [cited 2018 Jun 13];58(4):443-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22092322 https://www.ncbi.nlm.nih.gov/pubmed/2209... ⁾ with companion⁽¹³13 Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol [Internet]. 2010 [cited 2017 Jul 16];74(3):265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20042242 https://www.ncbi.nlm.nih.gov/pubmed/2004... ^-¹⁴14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... ^,²¹21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... ^-²²22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ^,³¹31 Al-Abdi SY, Al-Ali EA, Daheer MH, Al-Saleh YM, Al-Qurashi KH, Al-Aamri MA. Saudi mothers’ preferences about breaking bad news concerning newborns: a structured verbal questionnaire. BMC Medical Ethics [Internet]. 2011 [cited 2018 Dec 13];12:15. Available from: https://www.ncbi.nlm.nih.gov/pubmed/21861876 https://www.ncbi.nlm.nih.gov/pubmed/2186... ^-³²32 Afonso SBC, Mitre RMA. Noticias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística. Ciên Saúde Coletiva [Internet]. 2013 [cited 2018 Jan 13];18(9):2605-13. Available from: www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf... ⁾	maturity⁽²¹21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... ^,²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^,²⁵25 Nzota MS, Matovu JKB, Draper HR, Kisa R, Kiwanuka SN. Determinats and processo f HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: cross-sectional study. BMC Pediatrics [Internet]. 2015 [cited 2018 Jan 13];15:81. Available from: https://www.springermedizin.de/determinants-and-processes-of-hiv-status-disclosure-to-hiv-infec/9746990 https://www.springermedizin.de/determina... 26 Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children is South Africa: focus groups for intervention development. Vulnerable Child Youth Stud [Internet]. 2012 [cited 2017 Dec 12];7(1):47-54. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22468145 https://www.ncbi.nlm.nih.gov/pubmed/2246... ^-²⁷27 Clarke SA, Davies H, Jenney M, Glaser A, Eiser C. Parental communication and children’s behaviour following diagnosis of childhood leukaemia. Psycho-Oncol [Internet]. 2005 [cited 2018 Jul 13]14(4):274-81. Available from: https://www.ncbi.nlm.nih.gov/pubmed/15386768 https://www.ncbi.nlm.nih.gov/pubmed/1538... ^,²⁹29 Goodwin J, Schoch K, Shashi V, Hooper SR, Morad O, Zalevsky M, et al. A tale worth telling: the impacto f the diagnosis experience on disclosure of genetic disorders. J Intellect Disabil Res [Internet]. 2015 [cited 2018 Jan 18];59(5):474-86. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25059276 https://www.ncbi.nlm.nih.gov/pubmed/2505... ^-³⁰30 Arabiat DH, Alqaissi NM, Hamdan-Mansour AM. Children’s knowledge of cancer diagnosis and treatment: jordanian mothers’ perceptions and satisfaction with the process. Int Nurs Rev [Internet]. 2011 [cited 2018 Jun 13];58(4):443-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22092322 https://www.ncbi.nlm.nih.gov/pubmed/2209... ^,³³33 Boon-Yasidhi V, Kottapat U, Durier Y, Plipat N, Phongsamart W, Chokephaibulkit K, et al. Diagnosis disclosure in HIV-infected Thai children. J Med Assoc Thai [Internet]. 2005 [cited 2018 Jan 26];88(8):S100-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16858851 https://www.ncbi.nlm.nih.gov/pubmed/1685... 34 Jalmsell L, Lövgren M, Kreicbergs U, Henter JI, Frost BM. Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr [Internet]. 2016 [cited 2018 Jan 16];105(9):1094-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27272911 https://www.ncbi.nlm.nih.gov/pubmed/2727... 35 Trejos AM, Reyes L, Bahamon MJ, Alarcón Y, Gaviria G. Effects in the adherence treatment and psychological adjustment after the disclosure of HIV/AIDS diagnosis with the "DIRE" clinical model in Colombian children under 17. Rev Child Infectol. 2015;32(4):408-15. doi: 10.4067/S0716-10182015000500007 https://doi.org/10.4067/S0716-1018201500... 36 Last BF, van Veldhuizen AMH. Information about diagnosis and prognosis related to anxiety and depression in children with cancer aged 8-16 years. EJC. 1996;32(2):290-4. Available from: doi: 10.1016/0959-8049(95)00576-5 https://doi.org/10.1016/0959-8049(95)005... 37 Waxler JL, Cherniske EM, Dieter K, Herd P, Pober BR. Hearing from parents: the impacto f receiving the diagnosis of Williams syndrome in their child. Am J Med Genet A [Internet]. 2013 [cited 2018 Jan 19];161A(3):534-41. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23401422 https://www.ncbi.nlm.nih.gov/pubmed/2340... 38 Thorne C, Newell ML, Peckham CS. Disclosure of diagnosis and planning for the future in HIV-affected families in Europe. Child Care Health Dev. 2000;26(1):29-40. doi: 10.1046/j.1365-2214.2000.00128.x https://doi.org/10.1046/j.1365-2214.2000... 39 Muñoz Sastre MT, Sorum PC, Mullet E. Lay people’s and health professionals’views about breaking bad news to children. Child Care Health Dev [Internet]. 2014 [cited 2018 Jan 26];40(1):106-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22928950 https://www.ncbi.nlm.nih.gov/pubmed/2292... ^-⁴⁰40 Vaz LM, Eng E, Maman S, Tshikandu T, Behets F. Telling children they have HIV: lessons learned from findings of a qualitative study in Sub-Saharan Africa. AIDS Patients Care STDS [Internet]. 2010 [cited 2018 Jun 12];24(4):247-56. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20397899 https://www.ncbi.nlm.nih.gov/pubmed/2039... ⁾ the right to know⁽²⁶26 Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children is South Africa: focus groups for intervention development. Vulnerable Child Youth Stud [Internet]. 2012 [cited 2017 Dec 12];7(1):47-54. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22468145 https://www.ncbi.nlm.nih.gov/pubmed/2246... ^,³⁴34 Jalmsell L, Lövgren M, Kreicbergs U, Henter JI, Frost BM. Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr [Internet]. 2016 [cited 2018 Jan 16];105(9):1094-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27272911 https://www.ncbi.nlm.nih.gov/pubmed/2727... ^,³⁶36 Last BF, van Veldhuizen AMH. Information about diagnosis and prognosis related to anxiety and depression in children with cancer aged 8-16 years. EJC. 1996;32(2):290-4. Available from: doi: 10.1016/0959-8049(95)00576-5 https://doi.org/10.1016/0959-8049(95)005... ⁾
Sender			physician⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... 12 Parsons SK, Saiki-Craighill S, Mayer DK, Sullivan AM, Jeruss S, Terrin N, et al. Telling children and adolescent about their cancer diagnosis: cross-cultural comparisons between pediatric oncologists in the US and Japan. Psycho-Oncol[Internet]. 2007 [cited 2018 Jan 10];16(1):60-8. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16874746 https://www.ncbi.nlm.nih.gov/pubmed/1687... 13 Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol [Internet]. 2010 [cited 2017 Jul 16];74(3):265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20042242 https://www.ncbi.nlm.nih.gov/pubmed/2004... 14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... 15 Stenmarker M, Hallberg U, Palmérus K, Márky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr Blood Cancer [Internet]. 2010 [cited 2017 Jun 18];55(3):478-84. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20658619 https://www.ncbi.nlm.nih.gov/pubmed/2065... ^-¹⁶16 Finan C, Nasr SZ, Rothwell E, Tarini BA. Primary care providers’experiences notifying parents of cystic fibrosis newborn screening results. Clin Pediatr (Phila) [Internet]. 2014 [cited 2018 Jan 16];54(1):67-75. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25104730 https://www.ncbi.nlm.nih.gov/pubmed/2510... ^,¹⁸18 Hasnat MJ, Graves P. Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. J Paediatr Child Health [Internet]. 2000 [cited 2018 Jan16];36(1):32-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10723688 https://www.ncbi.nlm.nih.gov/pubmed/1072... 19 Parker TM, Johnston DL. Parental perceptions of being told their child has cancer. Pediatr Blood Cancer [Internet]. 2008 [cited 2017 Jan 26];51(4):531-4. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18623217 https://www.ncbi.nlm.nih.gov/pubmed/1862... 20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... ^-²¹21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... ^,²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^-²⁴24 Gomes GC, Xavier DM, Mota MS, Salvador MS, Silveira RS, Barlem ELD. Dando notícias difíceis à família da criança em situação grave ou em processo de terminalidade. Rev Enferm UERJ [Internet]. 2014 [cited 2017 Jun 26];22(3):347-52. Available from: https://pesquisa.bvsalud.org/portal/resource/pt/bde-27990 https://pesquisa.bvsalud.org/portal/reso... ^,³⁰30 Arabiat DH, Alqaissi NM, Hamdan-Mansour AM. Children’s knowledge of cancer diagnosis and treatment: jordanian mothers’ perceptions and satisfaction with the process. Int Nurs Rev [Internet]. 2011 [cited 2018 Jun 13];58(4):443-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22092322 https://www.ncbi.nlm.nih.gov/pubmed/2209... 31 Al-Abdi SY, Al-Ali EA, Daheer MH, Al-Saleh YM, Al-Qurashi KH, Al-Aamri MA. Saudi mothers’ preferences about breaking bad news concerning newborns: a structured verbal questionnaire. BMC Medical Ethics [Internet]. 2011 [cited 2018 Dec 13];12:15. Available from: https://www.ncbi.nlm.nih.gov/pubmed/21861876 https://www.ncbi.nlm.nih.gov/pubmed/2186... ^-³²32 Afonso SBC, Mitre RMA. Noticias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística. 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Clin Child Psychol Psychiatr [Internet]. 2012 [cited 2018 Jan 26];18(3):370-82. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22904114 https://www.ncbi.nlm.nih.gov/pubmed/2290... 43 Harnett A, Tierney E, Guerin S. Convention of hope-communicating positive, realistic messages to families at the time of a child’s diagnosis with disabilities. British J Learn Disabil. 2009;37:257-64. doi: 10.1111/j.1468-3156.2009.00580.x https://doi.org/10.1111/j.1468-3156.2009... 44 Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. Communication about prognosis between parents and physicians of children with cancer: parents preferences and the impact of prognostic information. J Clin Oncol [Internet]. 2006 [cited 2017 Jun 26];24(33):5265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/17114660 https://www.ncbi.nlm.nih.gov/pubmed/1711... 45 Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros [Internet]. 2015 [cited 2018 Jun 16];14(4):540-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25563520 https://www.ncbi.nlm.nih.gov/pubmed/2556... 46 Abdelmoktader AM, Abd Elhamed KA. Egyptian mothers’ preferences regarding how physicians break bad news about their child’s disability: A structured verbal questionnaire. BMC Med Ethics [Internet]. 2012 [cited 2018 Jan 16];13:14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22747832 https://www.ncbi.nlm.nih.gov/pubmed/2274... 47 Young B, Ward J, Salmon P, Gravenhorst K, Hill J, Eden T. Parents’ experiences of their children’s presence in discussions with physicians about leukemia. Pediatr [Internet]. 2011 [cited 2018 Jun 25];127(5):1230-8. Available from: pediatrics.aappublications.org/content/127/5/e1230 pediatrics.aappublications.org/content/1... 48 Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, et al. Parents’s perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med [Internet]. 2008 [cited 2018 Jun 25];9(1):2-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18477906 https://www.ncbi.nlm.nih.gov/pubmed/1847... ^-⁴⁹49 Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care [Internet]. 2007 [cited 2017 Jan 13];5(4):355-65. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18044413 https://www.ncbi.nlm.nih.gov/pubmed/1804... ⁾ nurse⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... 12 Parsons SK, Saiki-Craighill S, Mayer DK, Sullivan AM, Jeruss S, Terrin N, et al. Telling children and adolescent about their cancer diagnosis: cross-cultural comparisons between pediatric oncologists in the US and Japan. Psycho-Oncol[Internet]. 2007 [cited 2018 Jan 10];16(1):60-8. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16874746 https://www.ncbi.nlm.nih.gov/pubmed/1687... 13 Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol [Internet]. 2010 [cited 2017 Jul 16];74(3):265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20042242 https://www.ncbi.nlm.nih.gov/pubmed/2004... 14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... 15 Stenmarker M, Hallberg U, Palmérus K, Márky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr Blood Cancer [Internet]. 2010 [cited 2017 Jun 18];55(3):478-84. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20658619 https://www.ncbi.nlm.nih.gov/pubmed/2065... ^-¹⁶16 Finan C, Nasr SZ, Rothwell E, Tarini BA. Primary care providers’experiences notifying parents of cystic fibrosis newborn screening results. Clin Pediatr (Phila) [Internet]. 2014 [cited 2018 Jan 16];54(1):67-75. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25104730 https://www.ncbi.nlm.nih.gov/pubmed/2510... ^,¹⁸18 Hasnat MJ, Graves P. Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. J Paediatr Child Health [Internet]. 2000 [cited 2018 Jan16];36(1):32-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10723688 https://www.ncbi.nlm.nih.gov/pubmed/1072... 19 Parker TM, Johnston DL. Parental perceptions of being told their child has cancer. Pediatr Blood Cancer [Internet]. 2008 [cited 2017 Jan 26];51(4):531-4. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18623217 https://www.ncbi.nlm.nih.gov/pubmed/1862... 20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... ^-²¹21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... ^,²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^-²⁴24 Gomes GC, Xavier DM, Mota MS, Salvador MS, Silveira RS, Barlem ELD. Dando notícias difíceis à família da criança em situação grave ou em processo de terminalidade. Rev Enferm UERJ [Internet]. 2014 [cited 2017 Jun 26];22(3):347-52. Available from: https://pesquisa.bvsalud.org/portal/resource/pt/bde-27990 https://pesquisa.bvsalud.org/portal/reso... ^,³⁰30 Arabiat DH, Alqaissi NM, Hamdan-Mansour AM. Children’s knowledge of cancer diagnosis and treatment: jordanian mothers’ perceptions and satisfaction with the process. Int Nurs Rev [Internet]. 2011 [cited 2018 Jun 13];58(4):443-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22092322 https://www.ncbi.nlm.nih.gov/pubmed/2209... 31 Al-Abdi SY, Al-Ali EA, Daheer MH, Al-Saleh YM, Al-Qurashi KH, Al-Aamri MA. Saudi mothers’ preferences about breaking bad news concerning newborns: a structured verbal questionnaire. BMC Medical Ethics [Internet]. 2011 [cited 2018 Dec 13];12:15. Available from: https://www.ncbi.nlm.nih.gov/pubmed/21861876 https://www.ncbi.nlm.nih.gov/pubmed/2186... ^-³²32 Afonso SBC, Mitre RMA. Noticias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística. Ciên Saúde Coletiva [Internet]. 2013 [cited 2018 Jan 13];18(9):2605-13. Available from: www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf... ^,³⁴34 Jalmsell L, Lövgren M, Kreicbergs U, Henter JI, Frost BM. Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr [Internet]. 2016 [cited 2018 Jan 16];105(9):1094-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27272911 https://www.ncbi.nlm.nih.gov/pubmed/2727... ^-³⁵35 Trejos AM, Reyes L, Bahamon MJ, Alarcón Y, Gaviria G. Effects in the adherence treatment and psychological adjustment after the disclosure of HIV/AIDS diagnosis with the "DIRE" clinical model in Colombian children under 17. Rev Child Infectol. 2015;32(4):408-15. doi: 10.4067/S0716-10182015000500007 https://doi.org/10.4067/S0716-1018201500... ^,³⁷37 Waxler JL, Cherniske EM, Dieter K, Herd P, Pober BR. Hearing from parents: the impacto f receiving the diagnosis of Williams syndrome in their child. Am J Med Genet A [Internet]. 2013 [cited 2018 Jan 19];161A(3):534-41. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23401422 https://www.ncbi.nlm.nih.gov/pubmed/2340... ^-³⁸38 Thorne C, Newell ML, Peckham CS. Disclosure of diagnosis and planning for the future in HIV-affected families in Europe. Child Care Health Dev. 2000;26(1):29-40. doi: 10.1046/j.1365-2214.2000.00128.x https://doi.org/10.1046/j.1365-2214.2000... ^,⁴¹41 Orioles A, Miller VA, Kersun LS, Ingram M, Morrison WE. “To be a phenomenal doctor you have to be the whole package”: physicians’ interpersonal behaviors during difficult conversations in pediatrics. J Palliat Med [Internet]. 2013 [cited 2018 Jun 12];16(8):929-33. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23808643 https://www.ncbi.nlm.nih.gov/pubmed/2380... 42 Abbott M, Bernard P, Forge J. Communicating a diagnosis of autism spectrum disorder-a qualitative study of parents’ experiences. Clin Child Psychol Psychiatr [Internet]. 2012 [cited 2018 Jan 26];18(3):370-82. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22904114 https://www.ncbi.nlm.nih.gov/pubmed/2290... 43 Harnett A, Tierney E, Guerin S. Convention of hope-communicating positive, realistic messages to families at the time of a child’s diagnosis with disabilities. British J Learn Disabil. 2009;37:257-64. doi: 10.1111/j.1468-3156.2009.00580.x https://doi.org/10.1111/j.1468-3156.2009... 44 Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. Communication about prognosis between parents and physicians of children with cancer: parents preferences and the impact of prognostic information. J Clin Oncol [Internet]. 2006 [cited 2017 Jun 26];24(33):5265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/17114660 https://www.ncbi.nlm.nih.gov/pubmed/1711... 45 Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros [Internet]. 2015 [cited 2018 Jun 16];14(4):540-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25563520 https://www.ncbi.nlm.nih.gov/pubmed/2556... 46 Abdelmoktader AM, Abd Elhamed KA. Egyptian mothers’ preferences regarding how physicians break bad news about their child’s disability: A structured verbal questionnaire. BMC Med Ethics [Internet]. 2012 [cited 2018 Jan 16];13:14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22747832 https://www.ncbi.nlm.nih.gov/pubmed/2274... 47 Young B, Ward J, Salmon P, Gravenhorst K, Hill J, Eden T. Parents’ experiences of their children’s presence in discussions with physicians about leukemia. Pediatr [Internet]. 2011 [cited 2018 Jun 25];127(5):1230-8. Available from: pediatrics.aappublications.org/content/127/5/e1230 pediatrics.aappublications.org/content/1... 48 Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, et al. Parents’s perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med [Internet]. 2008 [cited 2018 Jun 25];9(1):2-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18477906 https://www.ncbi.nlm.nih.gov/pubmed/1847... ^-⁴⁹49 Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care [Internet]. 2007 [cited 2017 Jan 13];5(4):355-65. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18044413 https://www.ncbi.nlm.nih.gov/pubmed/1804... ⁾ other professionals⁽¹⁵15 Stenmarker M, Hallberg U, Palmérus K, Márky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr Blood Cancer [Internet]. 2010 [cited 2017 Jun 18];55(3):478-84. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20658619 https://www.ncbi.nlm.nih.gov/pubmed/2065... ^,²⁰20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... ^,³⁵35 Trejos AM, Reyes L, Bahamon MJ, Alarcón Y, Gaviria G. Effects in the adherence treatment and psychological adjustment after the disclosure of HIV/AIDS diagnosis with the "DIRE" clinical model in Colombian children under 17. Rev Child Infectol. 2015;32(4):408-15. doi: 10.4067/S0716-10182015000500007 https://doi.org/10.4067/S0716-1018201500... ^,⁵⁰50 Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child Care Health Dev [Internet]. 2002 [cited 2017 Jan 15];28(1):65-71. Available from: https://www.ncbi.nlm.nih.gov/pubmed/11856189 https://www.ncbi.nlm.nih.gov/pubmed/1185... ⁾	family with professional support⁽¹⁵15 Stenmarker M, Hallberg U, Palmérus K, Márky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr Blood Cancer [Internet]. 2010 [cited 2017 Jun 18];55(3):478-84. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20658619 https://www.ncbi.nlm.nih.gov/pubmed/2065... ^,¹⁷17 Aein F, Delaram M. Giving bad news: a qualitative research exploration. Iran Red Crescent Med J [Internet]. 2014 [cited 2018 Jun 16];16(6):e8197. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102999/ https://www.ncbi.nlm.nih.gov/pmc/article... ^,²²22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ^,²⁵25 Nzota MS, Matovu JKB, Draper HR, Kisa R, Kiwanuka SN. Determinats and processo f HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: cross-sectional study. BMC Pediatrics [Internet]. 2015 [cited 2018 Jan 13];15:81. Available from: https://www.springermedizin.de/determinants-and-processes-of-hiv-status-disclosure-to-hiv-infec/9746990 https://www.springermedizin.de/determina... 26 Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children is South Africa: focus groups for intervention development. Vulnerable Child Youth Stud [Internet]. 2012 [cited 2017 Dec 12];7(1):47-54. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22468145 https://www.ncbi.nlm.nih.gov/pubmed/2246... 27 Clarke SA, Davies H, Jenney M, Glaser A, Eiser C. Parental communication and children’s behaviour following diagnosis of childhood leukaemia. Psycho-Oncol [Internet]. 2005 [cited 2018 Jul 13]14(4):274-81. Available from: https://www.ncbi.nlm.nih.gov/pubmed/15386768 https://www.ncbi.nlm.nih.gov/pubmed/1538... 28 Badarau DO, De Clercq E, Wangmo T, Dragomir M, Miron I, Kühne T, et al. Cancer care in Romania: challenges and pitfalls of children’s and a adolescent’s multifaceted involvement. J Med Ethics [Internet]. 2016 [cited 2018 Jan 13];42(12):757-61. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27697792 https://www.ncbi.nlm.nih.gov/pubmed/2769... ^-²⁹29 Goodwin J, Schoch K, Shashi V, Hooper SR, Morad O, Zalevsky M, et al. A tale worth telling: the impacto f the diagnosis experience on disclosure of genetic disorders. J Intellect Disabil Res [Internet]. 2015 [cited 2018 Jan 18];59(5):474-86. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25059276 https://www.ncbi.nlm.nih.gov/pubmed/2505... ^,³⁰30 Arabiat DH, Alqaissi NM, Hamdan-Mansour AM. Children’s knowledge of cancer diagnosis and treatment: jordanian mothers’ perceptions and satisfaction with the process. Int Nurs Rev [Internet]. 2011 [cited 2018 Jun 13];58(4):443-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22092322 https://www.ncbi.nlm.nih.gov/pubmed/2209... ^,³³33 Boon-Yasidhi V, Kottapat U, Durier Y, Plipat N, Phongsamart W, Chokephaibulkit K, et al. Diagnosis disclosure in HIV-infected Thai children. J Med Assoc Thai [Internet]. 2005 [cited 2018 Jan 26];88(8):S100-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16858851 https://www.ncbi.nlm.nih.gov/pubmed/1685... ^,³⁵35 Trejos AM, Reyes L, Bahamon MJ, Alarcón Y, Gaviria G. Effects in the adherence treatment and psychological adjustment after the disclosure of HIV/AIDS diagnosis with the "DIRE" clinical model in Colombian children under 17. Rev Child Infectol. 2015;32(4):408-15. doi: 10.4067/S0716-10182015000500007 https://doi.org/10.4067/S0716-1018201500... 36 Last BF, van Veldhuizen AMH. Information about diagnosis and prognosis related to anxiety and depression in children with cancer aged 8-16 years. EJC. 1996;32(2):290-4. Available from: doi: 10.1016/0959-8049(95)00576-5 https://doi.org/10.1016/0959-8049(95)005... 37 Waxler JL, Cherniske EM, Dieter K, Herd P, Pober BR. Hearing from parents: the impacto f receiving the diagnosis of Williams syndrome in their child. Am J Med Genet A [Internet]. 2013 [cited 2018 Jan 19];161A(3):534-41. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23401422 https://www.ncbi.nlm.nih.gov/pubmed/2340... ^-³⁸38 Thorne C, Newell ML, Peckham CS. Disclosure of diagnosis and planning for the future in HIV-affected families in Europe. Child Care Health Dev. 2000;26(1):29-40. doi: 10.1046/j.1365-2214.2000.00128.x https://doi.org/10.1046/j.1365-2214.2000... ^,⁴⁰40 Vaz LM, Eng E, Maman S, Tshikandu T, Behets F. Telling children they have HIV: lessons learned from findings of a qualitative study in Sub-Saharan Africa. AIDS Patients Care STDS [Internet]. 2010 [cited 2018 Jun 12];24(4):247-56. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20397899 https://www.ncbi.nlm.nih.gov/pubmed/2039... ^,⁴⁹49 Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care [Internet]. 2007 [cited 2017 Jan 13];5(4):355-65. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18044413 https://www.ncbi.nlm.nih.gov/pubmed/1804... ^-⁵⁰50 Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child Care Health Dev [Internet]. 2002 [cited 2017 Jan 15];28(1):65-71. Available from: https://www.ncbi.nlm.nih.gov/pubmed/11856189 https://www.ncbi.nlm.nih.gov/pubmed/1185... ⁾ professional⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,²⁰20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... ^,²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^,²⁵25 Nzota MS, Matovu JKB, Draper HR, Kisa R, Kiwanuka SN. Determinats and processo f HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: cross-sectional study. BMC Pediatrics [Internet]. 2015 [cited 2018 Jan 13];15:81. Available from: https://www.springermedizin.de/determinants-and-processes-of-hiv-status-disclosure-to-hiv-infec/9746990 https://www.springermedizin.de/determina... ^-²⁶26 Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children is South Africa: focus groups for intervention development. Vulnerable Child Youth Stud [Internet]. 2012 [cited 2017 Dec 12];7(1):47-54. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22468145 https://www.ncbi.nlm.nih.gov/pubmed/2246... ^,³⁰30 Arabiat DH, Alqaissi NM, Hamdan-Mansour AM. Children’s knowledge of cancer diagnosis and treatment: jordanian mothers’ perceptions and satisfaction with the process. Int Nurs Rev [Internet]. 2011 [cited 2018 Jun 13];58(4):443-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22092322 https://www.ncbi.nlm.nih.gov/pubmed/2209... ^,³⁹39 Muñoz Sastre MT, Sorum PC, Mullet E. Lay people’s and health professionals’views about breaking bad news to children. Child Care Health Dev [Internet]. 2014 [cited 2018 Jan 26];40(1):106-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22928950 https://www.ncbi.nlm.nih.gov/pubmed/2292... ⁾
Message	content	diagnoses⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... 12 Parsons SK, Saiki-Craighill S, Mayer DK, Sullivan AM, Jeruss S, Terrin N, et al. Telling children and adolescent about their cancer diagnosis: cross-cultural comparisons between pediatric oncologists in the US and Japan. Psycho-Oncol[Internet]. 2007 [cited 2018 Jan 10];16(1):60-8. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16874746 https://www.ncbi.nlm.nih.gov/pubmed/1687... 13 Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol [Internet]. 2010 [cited 2017 Jul 16];74(3):265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20042242 https://www.ncbi.nlm.nih.gov/pubmed/2004... 14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... 15 Stenmarker M, Hallberg U, Palmérus K, Márky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr Blood Cancer [Internet]. 2010 [cited 2017 Jun 18];55(3):478-84. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20658619 https://www.ncbi.nlm.nih.gov/pubmed/2065... 16 Finan C, Nasr SZ, Rothwell E, Tarini BA. Primary care providers’experiences notifying parents of cystic fibrosis newborn screening results. Clin Pediatr (Phila) [Internet]. 2014 [cited 2018 Jan 16];54(1):67-75. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25104730 https://www.ncbi.nlm.nih.gov/pubmed/2510... 17 Aein F, Delaram M. Giving bad news: a qualitative research exploration. Iran Red Crescent Med J [Internet]. 2014 [cited 2018 Jun 16];16(6):e8197. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102999/ https://www.ncbi.nlm.nih.gov/pmc/article... 18 Hasnat MJ, Graves P. Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. J Paediatr Child Health [Internet]. 2000 [cited 2018 Jan16];36(1):32-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10723688 https://www.ncbi.nlm.nih.gov/pubmed/1072... 19 Parker TM, Johnston DL. Parental perceptions of being told their child has cancer. Pediatr Blood Cancer [Internet]. 2008 [cited 2017 Jan 26];51(4):531-4. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18623217 https://www.ncbi.nlm.nih.gov/pubmed/1862... 20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... 21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... 22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ^-²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^,²⁵25 Nzota MS, Matovu JKB, Draper HR, Kisa R, Kiwanuka SN. Determinats and processo f HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: cross-sectional study. BMC Pediatrics [Internet]. 2015 [cited 2018 Jan 13];15:81. Available from: https://www.springermedizin.de/determinants-and-processes-of-hiv-status-disclosure-to-hiv-infec/9746990 https://www.springermedizin.de/determina... 26 Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children is South Africa: focus groups for intervention development. Vulnerable Child Youth Stud [Internet]. 2012 [cited 2017 Dec 12];7(1):47-54. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22468145 https://www.ncbi.nlm.nih.gov/pubmed/2246... 27 Clarke SA, Davies H, Jenney M, Glaser A, Eiser C. Parental communication and children’s behaviour following diagnosis of childhood leukaemia. Psycho-Oncol [Internet]. 2005 [cited 2018 Jul 13]14(4):274-81. Available from: https://www.ncbi.nlm.nih.gov/pubmed/15386768 https://www.ncbi.nlm.nih.gov/pubmed/1538... 28 Badarau DO, De Clercq E, Wangmo T, Dragomir M, Miron I, Kühne T, et al. Cancer care in Romania: challenges and pitfalls of children’s and a adolescent’s multifaceted involvement. J Med Ethics [Internet]. 2016 [cited 2018 Jan 13];42(12):757-61. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27697792 https://www.ncbi.nlm.nih.gov/pubmed/2769... 29 Goodwin J, Schoch K, Shashi V, Hooper SR, Morad O, Zalevsky M, et al. A tale worth telling: the impacto f the diagnosis experience on disclosure of genetic disorders. J Intellect Disabil Res [Internet]. 2015 [cited 2018 Jan 18];59(5):474-86. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25059276 https://www.ncbi.nlm.nih.gov/pubmed/2505... 30 Arabiat DH, Alqaissi NM, Hamdan-Mansour AM. Children’s knowledge of cancer diagnosis and treatment: jordanian mothers’ perceptions and satisfaction with the process. Int Nurs Rev [Internet]. 2011 [cited 2018 Jun 13];58(4):443-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22092322 https://www.ncbi.nlm.nih.gov/pubmed/2209... 31 Al-Abdi SY, Al-Ali EA, Daheer MH, Al-Saleh YM, Al-Qurashi KH, Al-Aamri MA. Saudi mothers’ preferences about breaking bad news concerning newborns: a structured verbal questionnaire. BMC Medical Ethics [Internet]. 2011 [cited 2018 Dec 13];12:15. Available from: https://www.ncbi.nlm.nih.gov/pubmed/21861876 https://www.ncbi.nlm.nih.gov/pubmed/2186... 32 Afonso SBC, Mitre RMA. Noticias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística. Ciên Saúde Coletiva [Internet]. 2013 [cited 2018 Jan 13];18(9):2605-13. Available from: www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf... 33 Boon-Yasidhi V, Kottapat U, Durier Y, Plipat N, Phongsamart W, Chokephaibulkit K, et al. Diagnosis disclosure in HIV-infected Thai children. J Med Assoc Thai [Internet]. 2005 [cited 2018 Jan 26];88(8):S100-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/16858851 https://www.ncbi.nlm.nih.gov/pubmed/1685... 34 Jalmsell L, Lövgren M, Kreicbergs U, Henter JI, Frost BM. Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr [Internet]. 2016 [cited 2018 Jan 16];105(9):1094-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27272911 https://www.ncbi.nlm.nih.gov/pubmed/2727... 35 Trejos AM, Reyes L, Bahamon MJ, Alarcón Y, Gaviria G. Effects in the adherence treatment and psychological adjustment after the disclosure of HIV/AIDS diagnosis with the "DIRE" clinical model in Colombian children under 17. Rev Child Infectol. 2015;32(4):408-15. doi: 10.4067/S0716-10182015000500007 https://doi.org/10.4067/S0716-1018201500... 36 Last BF, van Veldhuizen AMH. Information about diagnosis and prognosis related to anxiety and depression in children with cancer aged 8-16 years. EJC. 1996;32(2):290-4. Available from: doi: 10.1016/0959-8049(95)00576-5 https://doi.org/10.1016/0959-8049(95)005... 37 Waxler JL, Cherniske EM, Dieter K, Herd P, Pober BR. Hearing from parents: the impacto f receiving the diagnosis of Williams syndrome in their child. Am J Med Genet A [Internet]. 2013 [cited 2018 Jan 19];161A(3):534-41. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23401422 https://www.ncbi.nlm.nih.gov/pubmed/2340... ^-³⁸38 Thorne C, Newell ML, Peckham CS. Disclosure of diagnosis and planning for the future in HIV-affected families in Europe. Child Care Health Dev. 2000;26(1):29-40. doi: 10.1046/j.1365-2214.2000.00128.x https://doi.org/10.1046/j.1365-2214.2000... ^,⁴⁰40 Vaz LM, Eng E, Maman S, Tshikandu T, Behets F. Telling children they have HIV: lessons learned from findings of a qualitative study in Sub-Saharan Africa. AIDS Patients Care STDS [Internet]. 2010 [cited 2018 Jun 12];24(4):247-56. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20397899 https://www.ncbi.nlm.nih.gov/pubmed/2039... 41 Orioles A, Miller VA, Kersun LS, Ingram M, Morrison WE. “To be a phenomenal doctor you have to be the whole package”: physicians’ interpersonal behaviors during difficult conversations in pediatrics. J Palliat Med [Internet]. 2013 [cited 2018 Jun 12];16(8):929-33. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23808643 https://www.ncbi.nlm.nih.gov/pubmed/2380... 42 Abbott M, Bernard P, Forge J. Communicating a diagnosis of autism spectrum disorder-a qualitative study of parents’ experiences. Clin Child Psychol Psychiatr [Internet]. 2012 [cited 2018 Jan 26];18(3):370-82. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22904114 https://www.ncbi.nlm.nih.gov/pubmed/2290... 43 Harnett A, Tierney E, Guerin S. Convention of hope-communicating positive, realistic messages to families at the time of a child’s diagnosis with disabilities. British J Learn Disabil. 2009;37:257-64. doi: 10.1111/j.1468-3156.2009.00580.x https://doi.org/10.1111/j.1468-3156.2009... 44 Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. Communication about prognosis between parents and physicians of children with cancer: parents preferences and the impact of prognostic information. J Clin Oncol [Internet]. 2006 [cited 2017 Jun 26];24(33):5265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/17114660 https://www.ncbi.nlm.nih.gov/pubmed/1711... 45 Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros [Internet]. 2015 [cited 2018 Jun 16];14(4):540-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25563520 https://www.ncbi.nlm.nih.gov/pubmed/2556... 46 Abdelmoktader AM, Abd Elhamed KA. Egyptian mothers’ preferences regarding how physicians break bad news about their child’s disability: A structured verbal questionnaire. BMC Med Ethics [Internet]. 2012 [cited 2018 Jan 16];13:14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22747832 https://www.ncbi.nlm.nih.gov/pubmed/2274... ^-⁴⁷47 Young B, Ward J, Salmon P, Gravenhorst K, Hill J, Eden T. Parents’ experiences of their children’s presence in discussions with physicians about leukemia. Pediatr [Internet]. 2011 [cited 2018 Jun 25];127(5):1230-8. Available from: pediatrics.aappublications.org/content/127/5/e1230 pediatrics.aappublications.org/content/1... ^,⁴⁹49 Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care [Internet]. 2007 [cited 2017 Jan 13];5(4):355-65. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18044413 https://www.ncbi.nlm.nih.gov/pubmed/1804... ^-⁵⁰50 Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child Care Health Dev [Internet]. 2002 [cited 2017 Jan 15];28(1):65-71. Available from: https://www.ncbi.nlm.nih.gov/pubmed/11856189 https://www.ncbi.nlm.nih.gov/pubmed/1185... ⁾ prognoses⁽²⁴24 Gomes GC, Xavier DM, Mota MS, Salvador MS, Silveira RS, Barlem ELD. Dando notícias difíceis à família da criança em situação grave ou em processo de terminalidade. Rev Enferm UERJ [Internet]. 2014 [cited 2017 Jun 26];22(3):347-52. Available from: https://pesquisa.bvsalud.org/portal/resource/pt/bde-27990 https://pesquisa.bvsalud.org/portal/reso... ^-²⁵25 Nzota MS, Matovu JKB, Draper HR, Kisa R, Kiwanuka SN. Determinats and processo f HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: cross-sectional study. BMC Pediatrics [Internet]. 2015 [cited 2018 Jan 13];15:81. Available from: https://www.springermedizin.de/determinants-and-processes-of-hiv-status-disclosure-to-hiv-infec/9746990 https://www.springermedizin.de/determina... ^,³⁹39 Muñoz Sastre MT, Sorum PC, Mullet E. Lay people’s and health professionals’views about breaking bad news to children. Child Care Health Dev [Internet]. 2014 [cited 2018 Jan 26];40(1):106-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22928950 https://www.ncbi.nlm.nih.gov/pubmed/2292... ^,⁴⁸48 Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, et al. Parents’s perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med [Internet]. 2008 [cited 2018 Jun 25];9(1):2-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18477906 https://www.ncbi.nlm.nih.gov/pubmed/1847... ⁾
Message	form	honest⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,¹⁷17 Aein F, Delaram M. Giving bad news: a qualitative research exploration. Iran Red Crescent Med J [Internet]. 2014 [cited 2018 Jun 16];16(6):e8197. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102999/ https://www.ncbi.nlm.nih.gov/pmc/article... ^,³⁴34 Jalmsell L, Lövgren M, Kreicbergs U, Henter JI, Frost BM. Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr [Internet]. 2016 [cited 2018 Jan 16];105(9):1094-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27272911 https://www.ncbi.nlm.nih.gov/pubmed/2727... ^,⁴³43 Harnett A, Tierney E, Guerin S. Convention of hope-communicating positive, realistic messages to families at the time of a child’s diagnosis with disabilities. British J Learn Disabil. 2009;37:257-64. doi: 10.1111/j.1468-3156.2009.00580.x https://doi.org/10.1111/j.1468-3156.2009... ^,⁴⁷47 Young B, Ward J, Salmon P, Gravenhorst K, Hill J, Eden T. Parents’ experiences of their children’s presence in discussions with physicians about leukemia. Pediatr [Internet]. 2011 [cited 2018 Jun 25];127(5):1230-8. Available from: pediatrics.aappublications.org/content/127/5/e1230 pediatrics.aappublications.org/content/1... ^-⁴⁸48 Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, et al. Parents’s perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med [Internet]. 2008 [cited 2018 Jun 25];9(1):2-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18477906 https://www.ncbi.nlm.nih.gov/pubmed/1847... ^,⁵⁰50 Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child Care Health Dev [Internet]. 2002 [cited 2017 Jan 15];28(1):65-71. Available from: https://www.ncbi.nlm.nih.gov/pubmed/11856189 https://www.ncbi.nlm.nih.gov/pubmed/1185... ⁾ empathetic⁽¹³13 Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol [Internet]. 2010 [cited 2017 Jul 16];74(3):265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20042242 https://www.ncbi.nlm.nih.gov/pubmed/2004... ^,¹⁵15 Stenmarker M, Hallberg U, Palmérus K, Márky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr Blood Cancer [Internet]. 2010 [cited 2017 Jun 18];55(3):478-84. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20658619 https://www.ncbi.nlm.nih.gov/pubmed/2065... ^,¹⁷17 Aein F, Delaram M. Giving bad news: a qualitative research exploration. Iran Red Crescent Med J [Internet]. 2014 [cited 2018 Jun 16];16(6):e8197. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102999/ https://www.ncbi.nlm.nih.gov/pmc/article... ^,²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^,³²32 Afonso SBC, Mitre RMA. Noticias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística. Ciên Saúde Coletiva [Internet]. 2013 [cited 2018 Jan 13];18(9):2605-13. Available from: www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf... ^,⁴¹41 Orioles A, Miller VA, Kersun LS, Ingram M, Morrison WE. “To be a phenomenal doctor you have to be the whole package”: physicians’ interpersonal behaviors during difficult conversations in pediatrics. J Palliat Med [Internet]. 2013 [cited 2018 Jun 12];16(8):929-33. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23808643 https://www.ncbi.nlm.nih.gov/pubmed/2380... ^,⁴⁴44 Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. Communication about prognosis between parents and physicians of children with cancer: parents preferences and the impact of prognostic information. J Clin Oncol [Internet]. 2006 [cited 2017 Jun 26];24(33):5265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/17114660 https://www.ncbi.nlm.nih.gov/pubmed/1711... 45 Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros [Internet]. 2015 [cited 2018 Jun 16];14(4):540-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25563520 https://www.ncbi.nlm.nih.gov/pubmed/2556... ^-⁴⁶46 Abdelmoktader AM, Abd Elhamed KA. Egyptian mothers’ preferences regarding how physicians break bad news about their child’s disability: A structured verbal questionnaire. BMC Med Ethics [Internet]. 2012 [cited 2018 Jan 16];13:14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22747832 https://www.ncbi.nlm.nih.gov/pubmed/2274... ^,⁴⁸48 Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, et al. Parents’s perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med [Internet]. 2008 [cited 2018 Jun 25];9(1):2-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18477906 https://www.ncbi.nlm.nih.gov/pubmed/1847... 49 Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care [Internet]. 2007 [cited 2017 Jan 13];5(4):355-65. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18044413 https://www.ncbi.nlm.nih.gov/pubmed/1804... ^-⁵⁰50 Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child Care Health Dev [Internet]. 2002 [cited 2017 Jan 15];28(1):65-71. Available from: https://www.ncbi.nlm.nih.gov/pubmed/11856189 https://www.ncbi.nlm.nih.gov/pubmed/1185... ⁾ objective⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,²⁵25 Nzota MS, Matovu JKB, Draper HR, Kisa R, Kiwanuka SN. Determinats and processo f HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: cross-sectional study. BMC Pediatrics [Internet]. 2015 [cited 2018 Jan 13];15:81. Available from: https://www.springermedizin.de/determinants-and-processes-of-hiv-status-disclosure-to-hiv-infec/9746990 https://www.springermedizin.de/determina... ^,³²32 Afonso SBC, Mitre RMA. Noticias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística. Ciên Saúde Coletiva [Internet]. 2013 [cited 2018 Jan 13];18(9):2605-13. Available from: www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf... ^,⁴²42 Abbott M, Bernard P, Forge J. Communicating a diagnosis of autism spectrum disorder-a qualitative study of parents’ experiences. Clin Child Psychol Psychiatr [Internet]. 2012 [cited 2018 Jan 26];18(3):370-82. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22904114 https://www.ncbi.nlm.nih.gov/pubmed/2290... ^,⁴⁶46 Abdelmoktader AM, Abd Elhamed KA. Egyptian mothers’ preferences regarding how physicians break bad news about their child’s disability: A structured verbal questionnaire. BMC Med Ethics [Internet]. 2012 [cited 2018 Jan 16];13:14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22747832 https://www.ncbi.nlm.nih.gov/pubmed/2274... ^,⁴⁹49 Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care [Internet]. 2007 [cited 2017 Jan 13];5(4):355-65. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18044413 https://www.ncbi.nlm.nih.gov/pubmed/1804... ⁾ hopeful⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,²²22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ^,³⁴34 Jalmsell L, Lövgren M, Kreicbergs U, Henter JI, Frost BM. Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr [Internet]. 2016 [cited 2018 Jan 16];105(9):1094-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27272911 https://www.ncbi.nlm.nih.gov/pubmed/2727... ^,⁴³43 Harnett A, Tierney E, Guerin S. Convention of hope-communicating positive, realistic messages to families at the time of a child’s diagnosis with disabilities. British J Learn Disabil. 2009;37:257-64. doi: 10.1111/j.1468-3156.2009.00580.x https://doi.org/10.1111/j.1468-3156.2009... ^-⁴⁴44 Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. Communication about prognosis between parents and physicians of children with cancer: parents preferences and the impact of prognostic information. J Clin Oncol [Internet]. 2006 [cited 2017 Jun 26];24(33):5265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/17114660 https://www.ncbi.nlm.nih.gov/pubmed/1711... ^,⁵⁰50 Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child Care Health Dev [Internet]. 2002 [cited 2017 Jan 15];28(1):65-71. Available from: https://www.ncbi.nlm.nih.gov/pubmed/11856189 https://www.ncbi.nlm.nih.gov/pubmed/1185... ⁾ available for continuity⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,¹⁴14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... ^,¹⁷17 Aein F, Delaram M. Giving bad news: a qualitative research exploration. Iran Red Crescent Med J [Internet]. 2014 [cited 2018 Jun 16];16(6):e8197. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102999/ https://www.ncbi.nlm.nih.gov/pmc/article... ^,²⁰20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... ^-²¹21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... ^,⁴¹41 Orioles A, Miller VA, Kersun LS, Ingram M, Morrison WE. “To be a phenomenal doctor you have to be the whole package”: physicians’ interpersonal behaviors during difficult conversations in pediatrics. J Palliat Med [Internet]. 2013 [cited 2018 Jun 12];16(8):929-33. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23808643 https://www.ncbi.nlm.nih.gov/pubmed/2380... ^,⁴⁸48 Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, et al. Parents’s perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med [Internet]. 2008 [cited 2018 Jun 25];9(1):2-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18477906 https://www.ncbi.nlm.nih.gov/pubmed/1847... ^-⁴⁹49 Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care [Internet]. 2007 [cited 2017 Jan 13];5(4):355-65. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18044413 https://www.ncbi.nlm.nih.gov/pubmed/1804... ⁾
Channel		informational material⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,¹⁴14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... ^,¹⁶16 Finan C, Nasr SZ, Rothwell E, Tarini BA. Primary care providers’experiences notifying parents of cystic fibrosis newborn screening results. Clin Pediatr (Phila) [Internet]. 2014 [cited 2018 Jan 16];54(1):67-75. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25104730 https://www.ncbi.nlm.nih.gov/pubmed/2510... ^,²¹21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... ^-²²22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ^,²⁵25 Nzota MS, Matovu JKB, Draper HR, Kisa R, Kiwanuka SN. Determinats and processo f HIV status disclosure to HIV-infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: cross-sectional study. BMC Pediatrics [Internet]. 2015 [cited 2018 Jan 13];15:81. Available from: https://www.springermedizin.de/determinants-and-processes-of-hiv-status-disclosure-to-hiv-infec/9746990 https://www.springermedizin.de/determina... ^-²⁶26 Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children is South Africa: focus groups for intervention development. Vulnerable Child Youth Stud [Internet]. 2012 [cited 2017 Dec 12];7(1):47-54. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22468145 https://www.ncbi.nlm.nih.gov/pubmed/2246... ^,³⁰30 Arabiat DH, Alqaissi NM, Hamdan-Mansour AM. Children’s knowledge of cancer diagnosis and treatment: jordanian mothers’ perceptions and satisfaction with the process. Int Nurs Rev [Internet]. 2011 [cited 2018 Jun 13];58(4):443-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22092322 https://www.ncbi.nlm.nih.gov/pubmed/2209... ^,³⁷37 Waxler JL, Cherniske EM, Dieter K, Herd P, Pober BR. Hearing from parents: the impacto f receiving the diagnosis of Williams syndrome in their child. Am J Med Genet A [Internet]. 2013 [cited 2018 Jan 19];161A(3):534-41. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23401422 https://www.ncbi.nlm.nih.gov/pubmed/2340... ^,⁴⁵45 Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros [Internet]. 2015 [cited 2018 Jun 16];14(4):540-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25563520 https://www.ncbi.nlm.nih.gov/pubmed/2556... ⁾ evaluation of the quantity and quality of the content and pace of information⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,¹⁴14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... ^,¹⁶16 Finan C, Nasr SZ, Rothwell E, Tarini BA. Primary care providers’experiences notifying parents of cystic fibrosis newborn screening results. Clin Pediatr (Phila) [Internet]. 2014 [cited 2018 Jan 16];54(1):67-75. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25104730 https://www.ncbi.nlm.nih.gov/pubmed/2510... ^,¹⁸18 Hasnat MJ, Graves P. Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. J Paediatr Child Health [Internet]. 2000 [cited 2018 Jan16];36(1):32-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10723688 https://www.ncbi.nlm.nih.gov/pubmed/1072... 19 Parker TM, Johnston DL. Parental perceptions of being told their child has cancer. Pediatr Blood Cancer [Internet]. 2008 [cited 2017 Jan 26];51(4):531-4. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18623217 https://www.ncbi.nlm.nih.gov/pubmed/1862... 20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... ^-²¹21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... ^,²⁸28 Badarau DO, De Clercq E, Wangmo T, Dragomir M, Miron I, Kühne T, et al. Cancer care in Romania: challenges and pitfalls of children’s and a adolescent’s multifaceted involvement. J Med Ethics [Internet]. 2016 [cited 2018 Jan 13];42(12):757-61. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27697792 https://www.ncbi.nlm.nih.gov/pubmed/2769... ^,³¹31 Al-Abdi SY, Al-Ali EA, Daheer MH, Al-Saleh YM, Al-Qurashi KH, Al-Aamri MA. Saudi mothers’ preferences about breaking bad news concerning newborns: a structured verbal questionnaire. BMC Medical Ethics [Internet]. 2011 [cited 2018 Dec 13];12:15. Available from: https://www.ncbi.nlm.nih.gov/pubmed/21861876 https://www.ncbi.nlm.nih.gov/pubmed/2186... ^,³⁶36 Last BF, van Veldhuizen AMH. Information about diagnosis and prognosis related to anxiety and depression in children with cancer aged 8-16 years. EJC. 1996;32(2):290-4. Available from: doi: 10.1016/0959-8049(95)00576-5 https://doi.org/10.1016/0959-8049(95)005... ^-³⁷37 Waxler JL, Cherniske EM, Dieter K, Herd P, Pober BR. Hearing from parents: the impacto f receiving the diagnosis of Williams syndrome in their child. Am J Med Genet A [Internet]. 2013 [cited 2018 Jan 19];161A(3):534-41. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23401422 https://www.ncbi.nlm.nih.gov/pubmed/2340... ^,⁴⁰40 Vaz LM, Eng E, Maman S, Tshikandu T, Behets F. Telling children they have HIV: lessons learned from findings of a qualitative study in Sub-Saharan Africa. AIDS Patients Care STDS [Internet]. 2010 [cited 2018 Jun 12];24(4):247-56. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20397899 https://www.ncbi.nlm.nih.gov/pubmed/2039... 41 Orioles A, Miller VA, Kersun LS, Ingram M, Morrison WE. “To be a phenomenal doctor you have to be the whole package”: physicians’ interpersonal behaviors during difficult conversations in pediatrics. J Palliat Med [Internet]. 2013 [cited 2018 Jun 12];16(8):929-33. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23808643 https://www.ncbi.nlm.nih.gov/pubmed/2380... ^-⁴²42 Abbott M, Bernard P, Forge J. Communicating a diagnosis of autism spectrum disorder-a qualitative study of parents’ experiences. Clin Child Psychol Psychiatr [Internet]. 2012 [cited 2018 Jan 26];18(3):370-82. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22904114 https://www.ncbi.nlm.nih.gov/pubmed/2290... ^,⁴⁵45 Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros [Internet]. 2015 [cited 2018 Jun 16];14(4):540-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25563520 https://www.ncbi.nlm.nih.gov/pubmed/2556... ^,⁴⁸48 Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, et al. Parents’s perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med [Internet]. 2008 [cited 2018 Jun 25];9(1):2-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18477906 https://www.ncbi.nlm.nih.gov/pubmed/1847... ⁾
Feedbacks		emotion overload⁽¹⁵15 Stenmarker M, Hallberg U, Palmérus K, Márky I. Being a messenger of life-threatening conditions: experiences of pediatric oncologists. Pediatr Blood Cancer [Internet]. 2010 [cited 2017 Jun 18];55(3):478-84. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20658619 https://www.ncbi.nlm.nih.gov/pubmed/2065... ^,²²22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ^,³²32 Afonso SBC, Mitre RMA. Noticias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística. Ciên Saúde Coletiva [Internet]. 2013 [cited 2018 Jan 13];18(9):2605-13. Available from: www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf... ⁾ need to refer children's relatives to other services⁽¹³13 Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol [Internet]. 2010 [cited 2017 Jul 16];74(3):265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20042242 https://www.ncbi.nlm.nih.gov/pubmed/2004... ^,²²22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ^,⁴⁰40 Vaz LM, Eng E, Maman S, Tshikandu T, Behets F. Telling children they have HIV: lessons learned from findings of a qualitative study in Sub-Saharan Africa. AIDS Patients Care STDS [Internet]. 2010 [cited 2018 Jun 12];24(4):247-56. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20397899 https://www.ncbi.nlm.nih.gov/pubmed/2039... ⁾	negative feelings⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,¹⁴14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... ^,¹⁸18 Hasnat MJ, Graves P. Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. J Paediatr Child Health [Internet]. 2000 [cited 2018 Jan16];36(1):32-5. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10723688 https://www.ncbi.nlm.nih.gov/pubmed/1072... ^,²⁰20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... 21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... ^-²²22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ^,³⁷37 Waxler JL, Cherniske EM, Dieter K, Herd P, Pober BR. Hearing from parents: the impacto f receiving the diagnosis of Williams syndrome in their child. Am J Med Genet A [Internet]. 2013 [cited 2018 Jan 19];161A(3):534-41. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23401422 https://www.ncbi.nlm.nih.gov/pubmed/2340... ^,⁴²42 Abbott M, Bernard P, Forge J. Communicating a diagnosis of autism spectrum disorder-a qualitative study of parents’ experiences. Clin Child Psychol Psychiatr [Internet]. 2012 [cited 2018 Jan 26];18(3):370-82. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22904114 https://www.ncbi.nlm.nih.gov/pubmed/2290... ^,⁴⁹49 Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care [Internet]. 2007 [cited 2017 Jan 13];5(4):355-65. Available from: https://www.ncbi.nlm.nih.gov/pubmed/18044413 https://www.ncbi.nlm.nih.gov/pubmed/1804... ⁾ need for privacy⁽¹⁷17 Aein F, Delaram M. Giving bad news: a qualitative research exploration. Iran Red Crescent Med J [Internet]. 2014 [cited 2018 Jun 16];16(6):e8197. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102999/ https://www.ncbi.nlm.nih.gov/pmc/article... ⁾ need for support⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,¹³13 Gilbey P. Qualitative analysis of parents’ experience with receiving the news of the detection of their child’s hearing loss. Int J Pediatr Otorhinolaryngol [Internet]. 2010 [cited 2017 Jul 16];74(3):265-70. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20042242 https://www.ncbi.nlm.nih.gov/pubmed/2004... ^-¹⁴14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... ^,¹⁷17 Aein F, Delaram M. Giving bad news: a qualitative research exploration. Iran Red Crescent Med J [Internet]. 2014 [cited 2018 Jun 16];16(6):e8197. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102999/ https://www.ncbi.nlm.nih.gov/pmc/article... ^,²¹21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... ^,²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^,³²32 Afonso SBC, Mitre RMA. Noticias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística. Ciên Saúde Coletiva [Internet]. 2013 [cited 2018 Jan 13];18(9):2605-13. Available from: www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf www.scielo.br/pdf/csc/v18n9/v18n9a15.pdf... ^,⁴²42 Abbott M, Bernard P, Forge J. Communicating a diagnosis of autism spectrum disorder-a qualitative study of parents’ experiences. Clin Child Psychol Psychiatr [Internet]. 2012 [cited 2018 Jan 26];18(3):370-82. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22904114 https://www.ncbi.nlm.nih.gov/pubmed/2290... ^,⁴⁵45 Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros [Internet]. 2015 [cited 2018 Jun 16];14(4):540-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25563520 https://www.ncbi.nlm.nih.gov/pubmed/2556... ⁾ seeking other information sources⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,¹⁴14 Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet A [Internet]. 2003 [cited 2018 Jun 15];122A(2):100-7. Available from: https://www.ncbi.nlm.nih.gov/pubmed/12955760 https://www.ncbi.nlm.nih.gov/pubmed/1295... ^,¹⁶16 Finan C, Nasr SZ, Rothwell E, Tarini BA. Primary care providers’experiences notifying parents of cystic fibrosis newborn screening results. Clin Pediatr (Phila) [Internet]. 2014 [cited 2018 Jan 16];54(1):67-75. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25104730 https://www.ncbi.nlm.nih.gov/pubmed/2510... ^,²⁰20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... 21 Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med [Internet]. 1994 [cited 2018 Jul 22];8(2):105-14. Available from: https://www.ncbi.nlm.nih.gov/pubmed/8081551 https://www.ncbi.nlm.nih.gov/pubmed/8081... 22 Ablon J. Parents’ responses to their child’s diagnosis of neurofibromatosis 1. Am J Med Genet [Internet]. 2000 [cited 2018 Jan 23];93(2):136-42. Available from: https://www.ncbi.nlm.nih.gov/pubmed/10869117 https://www.ncbi.nlm.nih.gov/pubmed/1086... ^-²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^,²⁸28 Badarau DO, De Clercq E, Wangmo T, Dragomir M, Miron I, Kühne T, et al. Cancer care in Romania: challenges and pitfalls of children’s and a adolescent’s multifaceted involvement. J Med Ethics [Internet]. 2016 [cited 2018 Jan 13];42(12):757-61. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27697792 https://www.ncbi.nlm.nih.gov/pubmed/2769... ^,³⁴34 Jalmsell L, Lövgren M, Kreicbergs U, Henter JI, Frost BM. Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr [Internet]. 2016 [cited 2018 Jan 16];105(9):1094-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/27272911 https://www.ncbi.nlm.nih.gov/pubmed/2727... ^,⁴⁵45 Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros [Internet]. 2015 [cited 2018 Jun 16];14(4):540-6. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25563520 https://www.ncbi.nlm.nih.gov/pubmed/2556... ⁾	silencing⁽²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^,⁴¹41 Orioles A, Miller VA, Kersun LS, Ingram M, Morrison WE. “To be a phenomenal doctor you have to be the whole package”: physicians’ interpersonal behaviors during difficult conversations in pediatrics. J Palliat Med [Internet]. 2013 [cited 2018 Jun 12];16(8):929-33. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23808643 https://www.ncbi.nlm.nih.gov/pubmed/2380... ⁾ changes in mood and behavior⁽¹¹11 Afonso SBC, Minayo MCS. Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis. Ciên Saúde Coletiva [Internet]. 2017 [cited 2018 Jun 28];22(1):53-62. Available from: www.scielo.br/pdf/csc/v22n1/1413-8123-csc-22-01-0053.pdf www.scielo.br/pdf/csc/v22n1/1413-8123-cs... ^,²⁰20 Rujumba J1, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc [Internet]. 2010 [cited 2017 Jan 22];13:9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20205937 https://www.ncbi.nlm.nih.gov/pubmed/2020... ^,²³23 Phuma-Ngaiyaye EE, Dartey AF. Experiences of children living with HIV and AIDS following their diagnosis disclosure in Mzuzu, Malawi. Vulnerable Child Youth Stud. 2015;10(4):357-65. doi: 10.1080/17450128.2015.1083639 https://doi.org/10.1080/17450128.2015.10... ^,³⁰30 Arabiat DH, Alqaissi NM, Hamdan-Mansour AM. Children’s knowledge of cancer diagnosis and treatment: jordanian mothers’ perceptions and satisfaction with the process. Int Nurs Rev [Internet]. 2011 [cited 2018 Jun 13];58(4):443-9. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22092322 https://www.ncbi.nlm.nih.gov/pubmed/2209... ⁾ participation in self-care⁽²⁶26 Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children is South Africa: focus groups for intervention development. Vulnerable Child Youth Stud [Internet]. 2012 [cited 2017 Dec 12];7(1):47-54. Available from: https://www.ncbi.nlm.nih.gov/pubmed/22468145 https://www.ncbi.nlm.nih.gov/pubmed/2246... ^,³³33 Boon-Yasidhi V, Kottapat U, Durier Y, Plipat N, Phongsamart W, Chokephaibulkit K, et al. Diagnosis disclosure in HIV-infected Thai children. 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[1] Corresponding author: Cristiane Cardoso de Paula E-mail: cristiane.paula@ufsm.br