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From technology to tékhnē: communication of bad news in pediatric intensive care unit

ABSTRACT

Objective

to understand the perceptions of family members of children hospitalized in the Pediatric Intensive Care Unit regarding the communication of bad news.

Methods

this is a phenomenological study with 15 family members of children hospitalized in the Pediatric Intensive Care Unit of a public university hospital in the state of São Paulo. Interviews were carried out from October 2018 to March 2019. The discourses were understood grounded Heidegger’s existential phenomenology.

Results

two ontological categories emerged: The child’s family member existing in an inappropriate world; and The child’s family member glimpsing the essence of technology. Family members receive difficult news from health professionals in the instrumentality, emerging the need to extrapolate the technology in search of its essence.

Conclusions and implications for practice

the discourses reveal that modern technology overlaps with traditional ontology, since health professionals, when communicating difficult news, move away from the being and lose their essence. Health professionals’ improving interpersonal and communication skills can extrapolate the technical dimension, prevalent in intensive care.

Keywords:
Family; Child, Hospitalized; Health Communication; Healthcare Models; Intensive Care Unit Pediatric

RESUMO

Objetivo

compreender as percepções de familiares de crianças hospitalizadas em Unidade de Terapia Intensiva Pediátrica diante da comunicação de notícias difíceis.

Método

estudo fenomenológico com 15 familiares de crianças hospitalizadas em Unidade de Terapia Intensiva Pediátrica de um hospital universitário público do estado de São Paulo. Entrevistas foram realizadas no período de outubro de 2018 a março de 2019. A compreensão dos discursos se deu à luz da fenomenologia existencial heideggeriana.

Resultados

duas categorias ontológicas emergiram: O familiar da criança existindo em um mundo impróprio; e O familiar da criança vislumbrando a essência da técnica. O familiar recebe as notícias difíceis dos profissionais de saúde na instrumentalidade, emergindo a necessidade de extrapolar a técnica em busca da sua essência.

Conclusão e implicações para a prática

os discursos revelam que a tecnologia moderna se sobrepõe à ontologia tradicional, uma vez que o profissional de saúde, ao comunicar as notícias difíceis, afasta-se do ser e perde-se de sua essência. O aprimoramento de competências interpessoais e de comunicação dos profissionais de saúde pode extrapolar a dimensão técnica, prevalente em terapia intensiva.

Palavras-chave:
Família; Criança Hospitalizada; Comunicação em Saúde; Modelos de Assistência à Saúde; Unidade de Terapia Intensiva Pediátrica

RESUMEN

Objetivo

comprender las percepciones de los familiares de niños internados en una Unidad de Cuidados Intensivos Pediátricos frente a la comunicación de noticias difíciles.

Método

estudio fenomenológico con 15 familiares de ninõs hospitalizados en la Unidad de Cuidados Intensivos Pediátricos de un hospital universitario público en el estado de São Paulo. Las entrevistas se realizaron de octubre de 2018 a marzo de 2019. Los discursos fueron entendidos a la luz de la fenomenología existencial de Heidegger.

Resultados

emergieron dos categorías ontológicas: El familiar del niño existiendo en un mundo inapropiado; y El familiar del niño vislumbrando la esencia de la técnica. El familiar recibe noticias difíciles por parte de los profesionales de salud de instrumental, surgiendo la necesidad de extrapolar la técnica en busca de su esencia.

Conclusión e implicaciones para la práctica

los discursos revelan que la tecnología moderna se superpone a la ontología tradicional, ya que el profesional de la salud, al comunicar noticias difíciles, se aleja del ser y pierde su esencia. La mejora de las habilidades interpersonales y de comunicación de los profesionales de la salud puede extrapolar la dimensión técnica, prevalente en cuidados intensivos.

Palabras clave:
Familia; Niño Hospitalizado; Comunicación en Salud; Modelos de Atención de Salud; Unidade de Cuidado Intensivo Pediátrico

INTRODUCTION

In the context of hospitalization of children in the Pediatric Intensive Care Unit (PICU), given the complexity of the necessary care and the increasing dependence on technology, it is frequent that the family is approached by professionals with information that can be considered difficult news.11 Hallman ML, Bellury LM. Communication in Pediatric Critical Care Units: a review of the literature. Crit Care Nurse. 2020;40(2):e1-15. http://dx.doi.org/10.4037/ccn2020751. PMid:32236438.
http://dx.doi.org/10.4037/ccn2020751...

Often, the term “difficult news” is associated with loss situations and/or any information that is not welcome, and may cause emotional and psychological damage to recipients.22 Buckman R. Breaking bad news: why is it still so difficult? Br Med J. 1984;288(6430):1597-9. http://dx.doi.org/10.1136/bmj.288.6430.1597. PMid:6426658.
http://dx.doi.org/10.1136/bmj.288.6430.1...

When it comes to children in intensive care, the news announced by health professionals causes intense suffering to the family, which demands care during hospitalization.33 Dahav P, Sjöström-Strand A. Parents’ experiences of their child being admitted to a paediatric intensive care unit: a qualitative study-like being in another world. Scand J Caring Sci. 2018;32(1):363-70. http://dx.doi.org/10.1111/scs.12470. PMid:28833379.
http://dx.doi.org/10.1111/scs.12470...
In the face of unpredictable situations, family members have negative feelings such as shock, impotence, despair and fear of death of their child, with repercussions on daily life.44 Cabeça LPF, Melo LL. From despair to hope: copying of relatives of hospitalized children before bad news report. Rev Bras Enferm. 2020;73(Supl. 5):e20200340. http://dx.doi.org/10.1590/0034-7167-2020-0340. PMid:33206910.
http://dx.doi.org/10.1590/0034-7167-2020...

Communicating difficult news is considered a laborious task that requires knowledge, expertise and skill, since there is no way to change the reality to be revealed.55 Instituto Nacional do Câncer, Coordenação Geral de Gestão Assistencial, Coordenação de Educação. Comunicação de notícias difíceis: compartilhando desafios na atenção à saúde. Rio de Janeiro: Inca; 2010. Studies show that insufficient information, as well as the use of jargon or highly technical language, can make it difficult for the family to understand the news.66 Cabeça LPF, Souza FGM. Dimensões qualificadoras para a comunicação de notícias difíceis na unidade de terapia intensiva neonatal. J Res Fundam Care [Internet]. 2017; [citado 2022 abr 28];9(1):37-50. Disponível em: http://www.seer.unirio.br/index.php/cuidadofundamental/article/view/4153
http://www.seer.unirio.br/index.php/cuid...
,77 Zanon BP, Cremonese L, Ribeiro AC, Padoin SMM, Paula CC. Communication of bad news in pediatrics: integrative review. Rev Bras Enferm. 2020;73(Supl. 4):e20190059. http://dx.doi.org/10.1590/0034-7167-2019-0059. PMid:32785469.
http://dx.doi.org/10.1590/0034-7167-2019...

At this juncture, communication noises can occur, i.e., any source of message distortions communicated due to lack of clarity and even failures such as silencing attitudes and misleading information of treatment and/or cure, compromising the communication process.55 Instituto Nacional do Câncer, Coordenação Geral de Gestão Assistencial, Coordenação de Educação. Comunicação de notícias difíceis: compartilhando desafios na atenção à saúde. Rio de Janeiro: Inca; 2010.

In this regard, approaching children’s family members to communicate difficult news without prior planning is almost a guarantee of concern for the recipients of the news.77 Zanon BP, Cremonese L, Ribeiro AC, Padoin SMM, Paula CC. Communication of bad news in pediatrics: integrative review. Rev Bras Enferm. 2020;73(Supl. 4):e20190059. http://dx.doi.org/10.1590/0034-7167-2019-0059. PMid:32785469.
http://dx.doi.org/10.1590/0034-7167-2019...
,88 Beverley A. Reflecting on the communication process in health care. Part 1: clinical practice -breaking bad news. Br J Nurs. 2019;28(13):858-63. http://dx.doi.org/10.12968/bjon.2019.28.13.858.
http://dx.doi.org/10.12968/bjon.2019.28....
The news must be clearly and honestly announced,33 Dahav P, Sjöström-Strand A. Parents’ experiences of their child being admitted to a paediatric intensive care unit: a qualitative study-like being in another world. Scand J Caring Sci. 2018;32(1):363-70. http://dx.doi.org/10.1111/scs.12470. PMid:28833379.
http://dx.doi.org/10.1111/scs.12470...
looking at factors that may interfere with the communicative process, such as the level of instruction, cognition, culture, and belief.99 Martino LMS. Teoria da Comunicação: ideias, conceitos e métodos. Petrópolis: Vozes; 2017.,1010 Ostermann AC, Frezza M. “Veio o resultado do exame”: uma investigação linguístico-interacional de entregas de notícias diagnósticas (e como uma análise dessa natureza pode informar as práticas profissionais). Ling (Dis)Curso. 2017;17(1):25-50. http://dx.doi.org/10.1590/1982-4017-170102-0516.
http://dx.doi.org/10.1590/1982-4017-1701...

In the scientific literature, it is suggested that communication can be improved with organized protocols. Among the most cited are SPIKES1111 Buckman RA. Breaking bad news: the S-P-I-K-E-S strategy. Community Oncol. 2005;2(2):138-42. http://dx.doi.org/10.1016/S1548-5315(11)70867-1.
http://dx.doi.org/10.1016/S1548-5315(11)...
and PATIENT,1212 Pereira CR, Calônego MAM, Lemonica L, Barros GAM. The P-A-C-I-E-N-T-E protocol: an instrument for breaking bad news adapted to the Brazilian medical reality. Rev Assoc Med Bras. 2017;63(1):43-9. http://dx.doi.org/10.1590/1806-9282.63.01.43. PMid:28225878.
http://dx.doi.org/10.1590/1806-9282.63.0...
facilitators for communication in a planned and progressive way during the process. However, it is important to highlight that the protocols do not constitute non-modifiable recipes, but they are considered flexible tools that allow health professionals to announce difficult news enabling autonomy and leading role to the family in the determining processes.55 Instituto Nacional do Câncer, Coordenação Geral de Gestão Assistencial, Coordenação de Educação. Comunicação de notícias difíceis: compartilhando desafios na atenção à saúde. Rio de Janeiro: Inca; 2010.

Every communication process requires an appropriate form according to the subject so that effectiveness comes from the flexibility to use it in each circumstance, paying attention to the complexity, reciprocity of individuals involved and the uniqueness of each being,1313 Ulrich CM, Mooney-Doyle K, Grady C. Communicating with pediatric families at end-of-life is not a fantasy. Am J Bioeth. 2018;18(1):14-6. http://dx.doi.org/10.1080/15265161.2017.1401175. PMid:29313774.
http://dx.doi.org/10.1080/15265161.2017....
always adopting an ethical attitude and respect for the other.55 Instituto Nacional do Câncer, Coordenação Geral de Gestão Assistencial, Coordenação de Educação. Comunicação de notícias difíceis: compartilhando desafios na atenção à saúde. Rio de Janeiro: Inca; 2010.

It is considered that studies on the phenomenon of communication of difficult news have been published in different contexts such as oncology1414 Monteiro DT, Siqueira AC, Trentin LS. Comunicação de notícias difíceis em uma unidade de oncologia pediátrica. Bol Acad Paul Psicol [Internet]. 2021; [citado 2022 abr 28];41(101):205-16. Disponível em: http://pepsic.bvsalud.org/pdf/bapp/v41n101/a07v41n101.pdf
http://pepsic.bvsalud.org/pdf/bapp/v41n1...
and palliative care,1515 Camilo BHN, Serafim TC, Salim NR, Andreato AMO, Roveri JR, Misko MD. Comunicação de más notícias no contexto dos cuidados paliativos neonatal: experiência de enfermeiros intensivistas. Rev Gaúcha Enferm. 2022;43:e20210040. http://dx.doi.org/10.1590/1983-1447.2022.20210040. PMid:35043878.
http://dx.doi.org/10.1590/1983-1447.2022...

16 Das MK, Arora NK, Chellani HK, Debata PK, Meena KR, Rasaily R et al. Perceptions of the parents of deceased children and of healthcare providers about end-of-life communication and breaking bad news at a tertiary care public hospital in India: a qualitative exploratory study. PLoS One. 2021;16(3):e0248661. http://dx.doi.org/10.1371/journal.pone.0248661. PMid:33735296.
http://dx.doi.org/10.1371/journal.pone.0...
-1717 Rodrigues BA, José SAP, Carmo AS, Silva GCL, Silva TO. A comunicação de notícias difíceis pelos enfermeiros nos cuidados paliativos oncológico pediátricos: uma revisão integrativa. Research Society and Development. 2021;10(10):e335101018788. http://dx.doi.org/10.33448/rsd-v10i10.18788.
http://dx.doi.org/10.33448/rsd-v10i10.18...
with emphasis on strategies that qualify the communication process. However, there are gaps in scientific knowledge, particularly in nursing, regarding the perception of family members of children hospitalized in PICUs in the face of communication of difficult news.

Thus, when envisioning the peculiarities that concern the humanized attention to children’s family in the process of communicating difficult news, aiming at meaningful communication sustained by meaning,1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014. the research question that guided the study was: what is the perception of family members of children hospitalized in PICUs in the face of communication of difficult news?

It is believed that the reflective deepening of this theme, through the phenomenological look, can contribute to improving interpersonal and communication skills in health professionals, surpassing the technical dimension prevalent in pediatric intensive care.

From this perspective, this study aimed to understand the perceptions of family members of children hospitalized in PICUs related to communication of difficult news.

METHOD

This study focuses on the perceptions of family members who experienced the communication of difficult news about their children in PICUs. Thus, considering the nature of the object, the choice for qualitative research, especially that of a phenomenological approach, is of notorious relevance for understanding human experiences, allowing things to be seen as they happen, revealing the phenomenon beyond appearance.1919 Jackson C, Vaughan DR, Brown L. Discovering lived experiences thro descriptive phenomenology. Int J Contemp Hosp Manag. 2018;30(11):3309-25. http://dx.doi.org/10.1108/IJCHM-10-2017-0707.
http://dx.doi.org/10.1108/IJCHM-10-2017-...

Martin Heidegger’s existential phenomenology theoretical framework was adopted. Heidegger states that in experience, it is discovered that things are manifested at the same time, in a context with their own meanings, since they focus exclusively on the question of the being of beings, in different modalities.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014.

To understand the being, there is the need for own paths and adequate access to discover them, which will be based on the analysis of a particular entity. The questioned must be approached according to concepts concerning the being, i.e., ontological concepts. The ontic concepts make explicit the entities, the dimension of the facts, the factual situations inherent to surrounding entities that are objects, the things of the entity that concern us.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014.

However, Dasein is being-in-the-world, which concerns human beings, open to the different possibilities that man has to live, as they carry out their existence always in constant relationship with the surrounding world, located in time and space. For Dasein to reveal how it feels affected by intramundane beings and by others, it is necessary to appropriate its fundamental characteristic, language/discourse, having the possibility to say about the world that it lives and idealizes.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014.

Therefore, the choice for this approach occurred because it made possible the existential understanding of the being of attributed entities in their relationships with others and with themselves, in an opening of being possible. Thus, family members’ speech/language brought to light what was hidden, making it possible to unveil some facets for the unique understanding of the phenomenon, providing new questions about it.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014.,1919 Jackson C, Vaughan DR, Brown L. Discovering lived experiences thro descriptive phenomenology. Int J Contemp Hosp Manag. 2018;30(11):3309-25. http://dx.doi.org/10.1108/IJCHM-10-2017-0707.
http://dx.doi.org/10.1108/IJCHM-10-2017-...

The experiential descriptions that composed this study were obtained at PICUs of a public teaching hospital in the countryside of the state of São Paulo, Brazil, from October 2018 to March 2019, after approval by the Research Ethics Committee of the Universidade Estadual de Campinas (UNICAMP), under Opinion 2,294,231 and CAAE (Certificado de Apresentação para Apreciação Ética - Certificate of Presentation for Ethical Consideration) 71228717.7.000.5404, in 2017.

In PICUs of this study, communication of difficult news to family members, such as diagnoses, complications and complications, was announced by medical professionals in the children’s own bed or in a room for the family. In the unit, there are no protocols for communicating difficult news.

Study participants were 15 family members of children hospitalized in PICUs. Family members, accompanying the children during hospitalization in PICUs, who received difficult news from their own perspective and over 18 years old were included. The family concept was adopted for Family-Centered Care: family is who its members say they are, a group of individuals linked by strong emotional bonds, durability, and an inclination to participate in each other’s lives.2020 Wright LM, Leahey M. Enfermeiras e famílias: um guia para avaliação e intervenção na família. 5ª ed. São Paulo: Roca; 2012.

The choice of convenience was used to access participants, based on the search for those who were more accessible, collaborative and available to participate in the study,2121 Freitag RMK. Amostras sociolinguísticas: probabilísticas ou por conveniência? Rev Estudos Lingua. 2018;26(2):667-86. http://dx.doi.org/10.17851/2237-2083.26.2.667-686. [gem]
http://dx.doi.org/10.17851/2237-2083.26....
what happened individually, i.e., it only approached a family member after the transcription and initial analysis of the previous interview, following what was proposed in the methodological framework.2222 Martins J, Bicudo MAV. Pesquisa qualitativa em psicologia: fundamentos e recursos básicos. São Paulo: Centauro; 2005.

In this perspective, the main author, when approaching the family members, presented herself as a research nurse and started a dialogue. When talking about the theme, briefly explaining the research purpose, she noticed in her eyes the desire to be heard, to have their stories heard. Thus, she invited them to participate in the study and scheduled a date for the interview. In this study, there was no pilot interview, but training with regard to conducting a phenomenological interview.

Before starting them, the author obtained factual information from the participants, characterizing them in order to describe personal aspects. She briefly explained the research methodology, clarifying that the interview was based on two broad questions, with freedom to speak for as long as necessary.

Thus, the phenomenological interviews were carried out by the main researcher, in a quiet place, outside PICUs, guided by the following question: during your children’s hospitalization in PICUs, have you ever experienced news that you considered difficult? Tell me what happened to you/your family after this news.

Throughout the interview, according to phenomenological research principles, free of assumptions, an empathic and attentive relationship was adopted to identify the uniqueness of each participant, favoring the understanding of the phenomenon. Silence and the expression of acceptance were considered a form of dialogue, being alert to non-verbal forms of communication, such as intervals, gestures, emotions with pauses in speech, looks, laughter and tears, respecting the other’s space and time. The meetings allowed participants’ free expression, allowing spontaneity in their statements so that the phenomenological attitude allowed the immersion in the interviewees’ speeches.

For this moment, a field diary was used as a methodological resource, helping to record the historicity of each meeting and collaborating in the appropriation of meanings from which it would not be possible to identify them through verbal language.

All interviews were recorded, with the consent of participants, on a digital recorder, in order to maintain information reliability and, later, active listening of speeches and transcription in full by the researcher herself.

Thus, immediately, after transcription of family members’ speeches, in an attempt to identify the phenomenon essence, the phenomenon structure analysis began, which follows the steps: reading of discourse content, in order to understand its global configuration; attentive rereading, in order to identify significant statements (units of meaning); search for convergences (elements that are common to several discourses) and divergences (elements that are peculiar to only one discourse or to a few); from the convergences/divergences, elaboration of ontological categories and, finally, phenomenological understanding based on Heidegger’sconceptions.2222 Martins J, Bicudo MAV. Pesquisa qualitativa em psicologia: fundamentos e recursos básicos. São Paulo: Centauro; 2005.

Thus, all information was accessed through successive reading, with a view to the perception of significant speeches, either by repetition and/or degree of convergence/divergence in participants’ speeches.2222 Martins J, Bicudo MAV. Pesquisa qualitativa em psicologia: fundamentos e recursos básicos. São Paulo: Centauro; 2005.

The interviews ended when speeches reached theoretical saturation, proving to be sufficient and enabling, from the researcher’s perspective, the understanding of the phenomenon. Therefore, obtaining new discourses through other interviews would not add elements in relation to existing theoretical density.2323 van Rijnsoever FJ. I can’t get no saturation: a simulation and guidelines for sample sizes in qualitative research. PLoS One. 2017;12(7):e0181689. http://dx.doi.org/10.1371/journal.pone.0181689. PMid:28746358.
http://dx.doi.org/10.1371/journal.pone.0...
Thus, the descriptions of 15 family members were sufficient to understand the phenomenon studied. The total audio duration of the 15 interviews was 249 minutes. It is noteworthy that two invited family members did not accept to participate in the research, for personal reasons.

To ensure anonymity, participants were identified by fictitious names of birds, guaranteeing confidentiality in relation to identity. This choice emerged in a moment of reflection on the wisdom of these beings, because, even facing the night storms, falling from their nests and suffering losses, at dawn, they sing and fly in freedom looking for new possibilities.

RESULTS

The results of this study consisted of data from the analysis of interviews with 15 family members of children hospitalized in PICUs; among them are three grandmothers, eight mothers, one aunt and three fathers, aged between 19 and 52 years old.

The causes of hospitalization of children in PICUs were postoperative digestive and cardiac surgery, drowning, bile duct atresia, meningitis, severe metabolic syndrome, multiple trauma, myoclonus and hydrocephalus. Regarding the number of hospitalizations of children in PICUs, most were for the first time, and length of hospitalization, on the date of the interview, ranged from 5 to 60 days.

By giving voice to family members of children hospitalized in PICUs about their perceptions regarding communication of difficult news, it was possible to identify some facets of the phenomenon. Based on the units of meaning, the results were described in two ontological categories: The child’s family member existing in an inappropriate world; and The child’s family member glimpsing the essence of technology.

The child’s family member existing in an inappropriate world

In PICUs context, family members reveal that the communication of news about the children’s situation, such as diagnoses and complications, is characterized as difficult and transmitted in technical language that is difficult to understand. Moreover, family members consider it inappropriate, due to professionals’ attitude towards the way of speaking, the existing power relationship between professional-family and the environment/context without privacy of an Intensive Care Unit.

Sometimes, they say something, we immediately imagine: wow, my God in heaven, what’s going on? Like fontanels, they don’t speak fontanels, they speak another name. (Tangará)

[...] I think, like, I would have a different way of talking. [...] they say everything directly, they are rude to talk to us. You’re talking to a human, you’re not talking to an animal. The animal doesn’t understand much, but I understand. [...] but, another thing that, sometimes, they sin, there are times when we are with some families, then they come to tell the news, and that’s not cool! (Cockatiel)

Family members also associate the difficulty in understanding the news announced to the fact that they are laymen on the subject, so there is an effort to try to understand what is said. However, they are not always able to understand and assimilate the information.

Look, there’s always... lay people. Everything is very difficult, as in my case, everything they are going to say is very difficult to understand, to understand what they... try to pass on to us. [...] it comes from the technical part and says, “look, it’s like this”. [...] I didn’t know what internal bleeding was. [...] so, all this is a very confusing situation, you want to know a lot and you don’t understand. (Gouldian Finch)

[...] and the doctors were still saying that it was... that his problem was serious, that something worse could happen, you know? That thing was messing with our heads, you keep thinking a lot without understanding many things they say. Will it happen worse than the doctors are talking about? (Veste-Amarela)

Family members, despite recognizing themselves as laymen on the subject, perceive omission of information, which creates insecurity in understanding the reality, as medical professionals do not talk about the children’s real situation.

[...] the day before, they didn’t come to talk to us, and we got upset, because we are the parents and they don’t say anything to us, how is it going to be, how is it, where is it? [...] they try to disguise that the person is not a bad type, but at the same time, they don’t give us security. (Cockatiel)

[...] because of the delay in her surgery, neurologists did not say why not to do it, sometimes they told pediatricians, who sometimes did not know how to tell me. (Zebra Finch)

In this regard, when family members realize that something about children’s clinical condition is hidden, making it impossible to understand the real situation, they turn to other sources, such as a circle of family doctors, search sites and scientific evidence on the subject.

Because, well... we get the news, we don’t have anyone from the area, we don’t have anyone to help, I have an aunt who is a dermatologist. [...] at most, we Google it, despair even more and this in practical and functional terms is... bad. (Great Kiskadee)

[...] Me too, as I already have a little more... contact with the health area, I also started to research a lot about her disease. [...] because we have been researching, we have been reading articles, studying in order to know more. (Nightingale)

However, family members reveal that these strategies are insufficient and look for health professionals in the unit, such as doctors, nursing staff and professors, in search of more detailed explanations to understand what was announced.

I asked the doctor, “but what about the percentages?” And they said, “but it’s not math”. [...] here, the technicians told me about the machines, what was happening at the time, the nurses, we studied a little more, they talked, and the residents, the pediatricians who were taking care of him at the time came. [...] I even approached the professors [laughs]. (Gouldian Finch)

[...] I don’t let any “a” go unnoticed. They say “a”, and I already ask what that is. If they say “b”, I ask what that means, if it’s good, if there’s risk, if there’s this, if there’s that. [...] they walk in the door and, while I don’t know what they’re talking about, they don’t leave the room, and if they let me, I go back to the entrance to ask. How many times did I go out in front, here at the gas station, to ask them why he was here? If it was normal, if it was strange to happen that. (Tangará)

It is possible to perceive that family members, even in the face of facticity, receiving difficult news from health professionals in an inappropriate way, not understanding them immediately and resorting to other sources to overcome this gap, still seek to extrapolate the technology and glimpse its essence, which concerns a genuine understanding of what is happening with their children.

The child’s family member glimpsing the essence of technology

Family members yearn for clear, honest, realistic and timely announced explanations highlighted in speeches as essential elements for understanding the news. When the interaction between the health team and family members takes place in an effective and therapeutic way, professionals build an open dialogue and, in this context, clarify children’s procedures, needs and health situation.

[...] she [doctor] came, talked, sat down, tried to explain in a more, clearer way possible for us. [...] this conversation, this clearing up of doubts that you had, I think it was beneficial, it helped a lot to understand too, to accept the news, it has to be little by little, it has to go slowly and at some point we get there. [...] really, the tact that the doctor has helps a lot. [...] that they managed to break the news, it was not what we expected, but they broke the news smoothly. (Nightingale)

[...] the doctor explained that, in fact, her neurological condition was making it more complicated and that we couldn’t keep trying, intubate, extubate, intubate, because her life is at risk and we didn’t know that. (Azulão)

[...] then they tell me everything, I keep asking, asking if it’s normal, if it’s this and if it’s that, then they tell me everything that is... everything I want to know. (Tangará)

[...] as the saying goes, beating around the bush, which also helps us a lot. Receiving the news suddenly, all at once, the shock is greater, hence, if a person knows how to talk, speak, explain. (Hummingbird)

Thus, humanized communication of difficult news, recognizing family members’ desires and individualities, allows them to be more prepared to deal with the situation. However, although family members understand the news announced, they are worried about the seriousness and without perspective in the world in which it was released.

We are more relaxed, we are seeing her recovery, because we can expect it to be quick and that it is not. (Canary)

We didn’t know he had a liver problem, he had a liver problem, some wounds on his liver, with a shape of... pus in his liver. His hospitalization is taking a long [time]... (Martin)

In this process, family members become aware of the risks and complications in children’s recovery and also refer concern with the possible restrictions and/or physical limitations, such as not being able to play, resulting from children’s clinical prognosis.

I thought, therefore, that he would not be able to play, because it is very difficult, because children are already used to playing, running, jumping and, suddenly, I think that, with a lung, all this decreases. Then the situation became very difficult. (Cuckoo)

Oh no, in the beginning, we were fine like that. Oh my, poor thing! You will have to use a pacemaker. Ah, we were a little worried. Then we thought that we would have to restrict this, that we would not be able to do this, do that [...] (Tangará)

When experiencing its facticity during child hospitalization, added to the announcement of difficult news in a merely technical, fragmented and not very understanding way, family members feel frustrated, especially when realizing that children’s clinical condition does not progress as expected. In this sense, when approaching themselves, in their own way-of-being, they project the future, referring not to want to experience such a situation again.

The person may even have resistance, but we know that the best procedure is the procedure being performed in the hospital. [...] we see parents that even in the first, in the second week, in the first month, are really frustrated, as they are in a very difficult situation. they can’t understand, there is resistance with doctors, in wanting doctors’ parameters to be wrong. Afterwards, they go through a greater understanding, because they see that the doctors are understanding about the subject, with zeal, they are synchronizing these matters. (Sabiá)

[...] I understand the medical approach, I can see that they are doing the best they can to save her little life. (Curió)

[...] because at times it would decrease [oxygen saturation], at times it would come back, until we get to that moment when we know that he is still at risk for being in the ICU. That there is risk and that there is no mathematics, I learned that there is no mathematics. It’s... day after day, I found it’s day after day. [pause] (Gouldian Finch)

[...] in my life, no, no one deserves that. [...] I just hope I don’t have to spend more. I didn’t think I could handle such a thing. (Asa-Branca)

Family members, as being-in-the-world, reveal themselves in different ways in relation to communicating difficult news. Due to the possibility of remaking themselves in each situation, it makes them experience each moment of their lives in a different way, in the face of the possibilities that are in front of them and each need.

For this reason, regardless of the phenomenon of communicating difficult news, to be present in the world of family members of children hospitalized in PICUs, at each announcement, it is necessary for professionals to pay attention to the uniqueness of a person who receives the news, considering their understanding of the world and the possibility of feeling positively or negatively touched/affected while being-with-the-other in an original way.

DISCUSSION

In the process of communicating difficult news, family members of children hospitalized in PICUs reveal themselves in misunderstanding the information, given the complexity of the announced message. In this context, family members report that difficult news is inadequately communicated.

Heidegger points to the distinction of communication as being an ontic and ontological phenomenon. Ontically, communication is utterance with the other as such, summarizing only what the saying represents. Ontological speaking, on the other hand, concerns communicating related to the significant field sustained by meaning,1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014. i.e., what is implied in affirming previously needs meaning, in this condition, preceded by the movement of understanding.2424 Tomaz T. A comunicação e o outro: reflexões a partir da questão do Ser em Heidegger. Paulus: Rev Comunic Fapcom. 2019;3(5):89-102. http://dx.doi.org/10.31657/rcp.v3i5.95.
http://dx.doi.org/10.31657/rcp.v3i5.95...

The results of this study indicate that difficult news is communicated with a determined/ontic meaning, expressing an event, not its meaning. In this sense, communication loses its original force to discover the being of an entity, being reduced only to the capacity of representation of an entity.2525 Silva NAC, Freitas JL. “A questão da técnica” em Heidegger: considerações sobre a clínica psicológica. Rev Nufen: Phenom Interd. 2019;11(1):137-56. http://dx.doi.org/10.26823/RevistadoNUFEN.vol11.n01ensaio46.
http://dx.doi.org/10.26823/RevistadoNUFE...

The meaning of being retracts, as health professionals seek to apprehend it directly, with discourses that only measure and discover causes that standardize and theorize the facts. Thus, reflecting on the event of communication removed from the ontological condition derives from the concealment of the question about what, in fact, the phenomenon of communication means.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014.

Sometimes, for families, communicating objectively can alleviate uncertainty, allowing decisions to be made that consider children’s needs. In contrast, excessive optimism and/or lack of information proves to be a threat to understanding the situation.2626 Nyborn JA, Olcese M, Nickerson T, Mack JW. “Don’t try to cover the sky with your hands”: parents’ experiences with prognosis communication about their children with advanced cancer. J Palliat Med. 2016;19(6):626-31. http://dx.doi.org/10.1089/jpm.2015.0472. PMid:27115314.
http://dx.doi.org/10.1089/jpm.2015.0472...

For one mother, the communication of her daughter’s diagnosis of a malignant tumor was characterized as difficult news due to the immediate misunderstanding of the information.2727 Brouwer MA, Maeckelberghe ELM, van der Heide A, Hein IM, Verhagen EAAE. Breaking bad news: what parents would like you to know. Arch Dis Child. 2021;106(3):276-81. http://dx.doi.org/10.1136/archdischild-2019-318398. PMid:33127614.
http://dx.doi.org/10.1136/archdischild-2...
Likewise, the combination of the objective and impersonal nature of diagnosis and the lack of knowledge about a certain progressive neurodegenerative disease in children made it difficult for families to immediately understand.2828 Aoun SM, Breen LJ, Oliver D, Henderson RD, Edis R, O’Connor M et al. Family carers’ experiences of receiving the news of a diagnosis of motor neurone disease: a national survey. J Neurol Sci. 2017;372:144-51. http://dx.doi.org/10.1016/j.jns.2016.11.043. PMid:28017202.
http://dx.doi.org/10.1016/j.jns.2016.11....

Family members launched in the world of technology receives the difficult news of doctors in an inappropriate act,1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014. immersed in the uniformity of everyday life. The speeches also reveal that the news is communicated amid an arsenal of technical terms, in a short period of time, considered obstacles to the understanding of what was said. In this way, the representation of being becomes mathematical, i.e., the question of being gives way to the question of method, its essence being surpassed by the procedure.2929 Possamai FV. A técnica e a questão da técnica em Heidegger. Intuitio [Internet]. 2010; [citado 2022 abr 28];3(1):20-32. Disponível em: https://revistaseletronicas.pucrs.br/ojs/index.php/intuitio/article/view/6790/5121
https://revistaseletronicas.pucrs.br/ojs...

Negative aspects in relation to professionals’ attitude, the environment and the moment to announce the news should be considered, as they can interfere in family members’ ability to obtain and seize the information, mainly impairing their human capacity to discover the being of entities.

Difficult news about children’s clinical situation is communicated in instrumentality, incomprehensible to the inexperienced public so that the message being is reduced to technical occupation. Thus, the announced news is understood as a purely technical function, planable, without any ontological link.

In this sense, communicating difficult news to families requires both speaking and listening. However, most of the time, when reporting difficult news, doctors use 65% of the time, and 56% of that time is for announcing biomedical information and only 5% of the time is directed to questions for the family.3030 Boss RD, Donohue PK, Larson SM, Arnold RM, Roter DL. Family conferences in the neonatal ICU: observation of communication dynamics and contributions. Pediatr Crit Care Med. 2016;17(3):223-30. http://dx.doi.org/10.1097/PCC.0000000000000617. PMid:26684988.
http://dx.doi.org/10.1097/PCC.0000000000...
Given this polarity, there is a need to rethink this process, with emphasis on the importance of asking, offering opportunities for the family to converse/talk about, in addition to strengthening the relationship of trust and security among those involved.3131 Gibello J, Parsons HA, Citero VA. Importância da Comunicação de Más Notícias no Centro de Terapia Intensiva. Rev SBPH [Internet]. 2020; [citado 2022 abr 28];23(1):16-24. Disponível em: http://pepsic.bvsalud.org/pdf/rsbph/v23n1/03.pdf
http://pepsic.bvsalud.org/pdf/rsbph/v23n...

In an environment of respect for the family, nurses consider the use of clear, honest and objective language, building open dialogue to clarify about children’s procedures and needs.3232 Koch CL, Rosa AB, Bedin SC. Más notícias: significados atribuídos na prática assistencial neonatal/pediátrica. Rev Bioet. 2017;25(3):577-84. http://dx.doi.org/10.1590/1983-80422017253214.
http://dx.doi.org/10.1590/1983-804220172...
Thus, when understanding the family’s needs, professionals may be prepared to answer questions and reveal, empathically, additional information that may be useful but difficult to hear.3333 Blazin LJ, Cecchini C, Habashy C, Kaye EC, Baker JN. Communicating effectively in pediatric cancer care: translating evidence into practice. Children. 2018;5(3):1-16. http://dx.doi.org/10.3390/children5030040. PMid:29534479.
http://dx.doi.org/10.3390/children503004...

Heidegger, at the lecture The Question Concerning Technology, held in 1953, follows a path in search of the definition of the Greek concept of tékhnē, showing that the technology is not similar to the essence of technology. He strives to resume the original meaning of this, when thinking about its modification in modernity, representing the final point in the history of oblivion of being.2525 Silva NAC, Freitas JL. “A questão da técnica” em Heidegger: considerações sobre a clínica psicológica. Rev Nufen: Phenom Interd. 2019;11(1):137-56. http://dx.doi.org/10.26823/RevistadoNUFEN.vol11.n01ensaio46.
http://dx.doi.org/10.26823/RevistadoNUFE...

The difference between technology and tékhnē is in unveiling mode. With the use of technology, unveiling takes place through production, an operating system that mechanically repeats and propagates the same model. In tékhnē, the goal is to let it happen, to bring the presence of something innovative so that the uncover takes place in the discovery of something, the truth, referring to art and know-how, knowing and knowing each other, to produce anything.2525 Silva NAC, Freitas JL. “A questão da técnica” em Heidegger: considerações sobre a clínica psicológica. Rev Nufen: Phenom Interd. 2019;11(1):137-56. http://dx.doi.org/10.26823/RevistadoNUFEN.vol11.n01ensaio46.
http://dx.doi.org/10.26823/RevistadoNUFE...

The discourses of family members of children hospitalized in PICU reveal that modern technology overlaps with traditional ontology, since health professionals, when communicating difficult news, move away from being and lose the essence. Health professionals safe in language collapse in the void, in the context of doing/fulfilling activities, taken as tasks, revealing the difficult news in a one-dimensional way, closed to the possibilities of the world and the being, without realizing the essence.

When something is said, it does not always mean that it is heard or understood.3434 Silva MJP. Comunicação de más notícias. Mundo Saude. 2012;36(1):49-53. http://dx.doi.org/10.15343/0104-7809.20123614953.
http://dx.doi.org/10.15343/0104-7809.201...
Thus, facilitating the understanding of the news, simplifying information in an accessible language, free of jargon and technical terms, is a skill valued by the family.66 Cabeça LPF, Souza FGM. Dimensões qualificadoras para a comunicação de notícias difíceis na unidade de terapia intensiva neonatal. J Res Fundam Care [Internet]. 2017; [citado 2022 abr 28];9(1):37-50. Disponível em: http://www.seer.unirio.br/index.php/cuidadofundamental/article/view/4153
http://www.seer.unirio.br/index.php/cuid...
,3535 Fan Z, Chen L, Meng L, Jiang H, Zhao Q, Zhang L et al. Preference of cancer patients and family members regarding delivery of bad news and differences in clinical practice among medical staff. Support Care Cancer. 2019;27(2):583-9. http://dx.doi.org/10.1007/s00520-018-4348-1. PMid:30022347.
http://dx.doi.org/10.1007/s00520-018-434...
,3636 Mcharo SK, Bally J, Spurr S, Walker K, Peacock S, Holtslander L. Exploring nursing presence as experienced by parents in pediatric oncology. J Pediatr Nurs. 2022;66:86-94. http://dx.doi.org/10.1016/j.pedn.2022.05.021. PMid:35687929.
http://dx.doi.org/10.1016/j.pedn.2022.05...

Families expect honesty, intelligibility, compassivity and punctuality in information from health professionals.2727 Brouwer MA, Maeckelberghe ELM, van der Heide A, Hein IM, Verhagen EAAE. Breaking bad news: what parents would like you to know. Arch Dis Child. 2021;106(3):276-81. http://dx.doi.org/10.1136/archdischild-2019-318398. PMid:33127614.
http://dx.doi.org/10.1136/archdischild-2...
,3737 Mostafavian Z, Shaye ZA, Farajpour A. Mothers’ preferences toward breaking bad news about their children câncer. J Family Med Prim Care. 2018;7(3):596-600. http://dx.doi.org/10.4103/jfmpc.jfmpc_342_17. PMid:30112316.
http://dx.doi.org/10.4103/jfmpc.jfmpc_34...
However, in some situations, health professionals even omit information about children’s actual clinical situation. The speeches reveal that the technical world guides professionals and transforms their needs into a desire to be able to master everything.

When health professionals, in their daily action of understanding, they are not aware of what they are understanding, they throw themselves before the possibilities, without a reflective understanding. As utensil meanings acquire a normative and rectifying power, action takes place without ever questioning the consistency of its foundations, bringing to the fore the ethical fragility that monopolizes everyday life.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014.

However, it is not the health professionals who have the technology, because the modern technology that has it and summons it in a certain way, preventing it from experiencing the true being of entity.3838 Coutinho ICM. A questão da técnica e o caminho para a linguagem na filosofia de Martin Heidegger. Prim Escritos. 2020;10(1):126-56. http://dx.doi.org/10.11606/issn.2594-5920.primeirosescritos.2020.155662.
http://dx.doi.org/10.11606/issn.2594-592...
Health professionals in PICUs allow themselves to be involved by the coldness in the process of communication with family members, obeying their own disclosure of availability, being distant from thought and meaning.3939 Dias JRB. Heidegger: técnica e esquecimento do ser. UFKLÄRUNG. 2020;7(3):159-68. http://dx.doi.org/10.18012/arf.v7i3.55972.
http://dx.doi.org/10.18012/arf.v7i3.5597...
These aspects call our attention that living in the way of being of technology in everyday life makes health professionals lose the meaning of the word “proximity”. Likewise, when they deny the existence of self-care, it leads family members to a process of devaluation regarding the subjective issues of human beings.

Faced with the above, Heidegger worries about the possibility of predominance of technology, converted into a single way of being able to destroy everything that is more proper to us, thinking, affecting our essence.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014. Heidegger thought seeks to recover the concept of technology, the way back to the same things, directed to the being, i.e., overcoming the apparent and building a freer relationship of Dasein with the unseen, its meaning.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014.

The problem to be questioned is to reflect how Dasein is revealed imbricated in the molds of the world of technology, as a way of doing, having it as the only truth, obstructing the path to the original meaning, the essence of technology.4040 Silva EFG, Santos SEB. Fenomenologia existencial como caminho para pesquisa qualitativa em psicologia. Rev Nufen: Phenom Interd [Internet]. 2017; [citado 2022 abr 28];9(3):110-26. Disponível em: http://pepsic.bvsalud.org/scielo.php?script=sci_abstract&pid=S2175-25912017000300008&lng=pt&nrm=iso
http://pepsic.bvsalud.org/scielo.php?scr...
,4141 Ruthes R. A questão da técnica e seus desdobramentos em Martin Heidegger. Controvérsia [Internet]. 2018; [citado 2022 abr 28];14(1):28-41. Disponível em: http://revistas.unisinos.br/index.php/controversia/article/view/15280
http://revistas.unisinos.br/index.php/co...

In this way, family members of children hospitalized in PICUs, faced with fragmented information that makes it difficult to understand what was said, seek different sources and resort to other strategies, including returning to health professionals who care for children, in an attempt to transcend technology.

The understanding of the world as a way-to-be of Dasein, inserted in a given context, directs them to realize their existence based on previous understandings, according to their facticity.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014. In the case of family members of children hospitalized in the PICU, for the first time or not, they are already immersed in a field of meaning, apprehending the news in a good or bad way, due to the fact that they already have a previous understanding of what was announced.

In fact, it is the world itself that provides early understanding of the being of entities in general. Dasein, from the beginning, is launched in previously established possibilities.4242 Casanova MA. Mundo e historicidade: leituras fenomenológicas de ser e tempo: existência e mundaneidade. Rio de Janeiro: Via Verita; 2017.

In the midst of such positioning, understanding, as a constitutive ontological characteristic of Dasein, allows us to glimpse the surrounding world, feeling touched by something that emerges in a given situation. Feeling affected by something changes the way-of-being of Dasein, because in the face of reality, they can feel more or less affected and differently, and this alters their life.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014. From this perspective, given the facticity in the world of technology, the discourses reveal that Dasein, by assuming their being themselves in the face of their own possibilities, they glimpse the essence of technology.

Thus, glimpsing the essence of technology refers to the ability to determine the truth of actions and tasks as an uncovering, becoming a determinant of ways-of-being in the world.2929 Possamai FV. A técnica e a questão da técnica em Heidegger. Intuitio [Internet]. 2010; [citado 2022 abr 28];3(1):20-32. Disponível em: https://revistaseletronicas.pucrs.br/ojs/index.php/intuitio/article/view/6790/5121
https://revistaseletronicas.pucrs.br/ojs...
Before it is even identified as an instrument, the original technology is what brings to light what has been designed. Instead of something fixed and changeable, the essence of technology opens up adequate access to things, i.e., a way of showing what was hidden, the unveiling leading the actions of the technical world.2525 Silva NAC, Freitas JL. “A questão da técnica” em Heidegger: considerações sobre a clínica psicológica. Rev Nufen: Phenom Interd. 2019;11(1):137-56. http://dx.doi.org/10.26823/RevistadoNUFEN.vol11.n01ensaio46.
http://dx.doi.org/10.26823/RevistadoNUFE...

Furthermore, transcending the technology and facilitating the understanding of the news, simplifying information in accessible language, free of jargon and technical terms are skills valued by family members of children hospitalized in PICU. Likewise, building an empathic, sensitive and committed relationship with the uniqueness of each family member,4343 Sengupta M, Roy A, Gupta S, Chakrabarti S, Mukhopadhyay I. Art of breaking bad news: a qualitative study in Indian healthcare perspective. Indian J Psychiatry. 2022;64(1):25-37. http://dx.doi.org/10.4103/indianjpsychiatry.indianjpsychiatry_346_21. PMid:35400752.
http://dx.doi.org/10.4103/indianjpsychia...
providing space for clarification regarding doubts and fears, leads to the phenomenon of communication in the ontological sense.1818 Heidegger M. Ser e tempo. Campinas: Unicamp; 2014.

Finally, the phenomenon of communication, in the ontological sense, will take place when health professionals see the existential dimension of family members in the mode of concern, when launching the possibility that they are beings of relationship with intramundane beings and other Dasein.4444 Braga TBM, Farinha MG. Heidegger: em busca de sentido para a existência humana. Rev Abordagem Gestált. 2017;23(1):65-73. http://dx.doi.org/10.18065/RAG.2017v23n1.7.
http://dx.doi.org/10.18065/RAG.2017v23n1...
Health professionals, when confronted with their own movement of being, understanding themselves as being-in-the-world-with-the-others, take on their project of being able to be, free to reflect the unthought, an act that extrapolate the existing ways of doing.

CONCLUSION AND IMPLICATIONS FOR PRACTICE

This study originated from what is shown, the ontic, the experience of family members of children hospitalized in PICUs inserted in the facticity of existing in the face of the communication of difficult news. In order to answer concerns about the phenomenon, it was necessary to go to the family members in search of the question of being, allowing them to come into existence, in the understanding of the essence of what was lived, before veiled, hidden, hidden. Thus, the choice of phenomenological research and Martin Heidegger’s theoretical-philosophical framework made it possible to unveil some nuances of the investigated object.

Family members receive difficult news from health professionals in instrumentality and reveal themselves in different ways in relation to communication of difficult news. Although they do not immediately understand the news communicated, they turn to other sources in an attempt to extrapolate the technology and glimpse its essence.

The perceptions of family members of seriously ill children regarding communication of difficult news in PICUs allow reflections on human existence, rethinking the models of organization of daily work, the relationships built in the care process, health professionals’ humanized education, among other aspects, in a different logic from the model that supports the positive sciences.

Communication as a care technology, especially in PICUs, needs attention in terms of involvement and respect for others, more horizontal relationships and sensitive listening in modes of coexistence.

It is suggested that health professionals working in the continuing education of services prioritize the development of skills and abilities that encompass the human dimension, going beyond the technical-scientific perspective. Furthermore, the need for curricular adaptations in health courses is pointed out, enabling the inclusion of such a theme, communication of difficult news, as a fundamental tool for health care.

As limitations of this study, it is highlighted that the research was carried out in only one PICU. Moreover, this unit does not follow a defined protocol for communicating difficult news. Therefore, the development of studies in other pediatric intensive care settings that adopt some protocol aimed at the process of communicating difficult news is indicated.

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Edited by

ASSOCIATED EDITOR

SCIENTIFIC EDITOR

Publication Dates

  • Publication in this collection
    09 Sept 2022
  • Date of issue
    2022

History

  • Received
    28 Apr 2022
  • Accepted
    01 Aug 2022
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