Introduction: The diagnosis of a serious illness in a family affects all members. The child is a special subject, as he cannot yet understand many aspects of life at such a high perceptual level as an adult. Communicating difficult information is part of the doctor's task and is one of the most difficult parts of the therapeutic process.&nbsp;
The aim of the study: To analyze the methodology of communicating difficult information to pediatric oncology patients.
Material and method: Polish and English-language scientific literature from 2012 - 2022 from databases such as PubMed, SCOPUS, Google Scholar, Web of Science was reviewed. Searches were conducted according to keywords: communicating difficult information, oncology, pediatrics, physician.
Results and conclusions: One of the most well-known protocols for communicating difficult information is SPIKES. It describes the basic and necessary steps for properly informing parents and the child about the diagnosis, for example. Healthy siblings should also learn about their brother's illness, but this task falls to the parents. Psycho-oncological support for both the child and parents should be holistic, based on best practices, and tailored to the family's needs.
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Fryze, Magdalena

Kościołek, Aneta

Michalczyk, Justyna

Pawłowski, Piotr

Ziętara, Karolina

English

Akademicka Platforma Czasopism

PAWŁOWSKI, Piotr, ZIĘTARA, Karolina, MICHALCZYK, Justyna, FRYZE, Magdalena & KOŚCIOŁEK, Aneta. Providinginformation about a child’s oncological disease - a challenge for a pediatric oncologist. Quality in Sport. 2023;11(1):81-88. eISSN2450-3118. DOI https://dx.doi.org/10.12775/QS.2023.11.01.006https://apcz.umk.pl/QS/article/view/43327The journal has had 20 points inMinistry of Education and Science of Poland parametric evaluation. Annex to the announcement of the Minister of Education and Science of December 21, 2021. No. 32582.Has a Journal's Unique Identifier: 201398. Scientific disciplines assigned: Economics and finance (Field of social sciences); Management and Quality Sciences (Field of social sciences).Punkty Ministerialne z 2019 - aktualny rok 20 punktów. Załącznik do komunikatu Ministra Edukacji i Nauki z dnia 21 grudnia 2021 r. Lp. 32582. Posiada Unikatowy Identyfikator Czasopisma: 201398.Przypisane dyscypliny naukowe: Ekonomia i finanse (Dziedzina nauk społecznych); Nauki o zarządzaniu i jakości (Dziedzina nauk społecznych).© The Authors 2023;This article is published with open access at Licensee Open Journal Systems of Nicolaus Copernicus University in Torun, PolandOpen Access. This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium,provided the original author (s) and source are credited. This is an open access article licensed under the terms of the Creative Commons Attribution Non commercial license Share alike.(http://creativecommons.org/licenses/by-nc-sa/4.0/) which permits unrestricted, non commercial use, distribution and reproduction in any medium, provided the work is properly cited.The authors declare that there is no conflict of interests regarding the publication of this paper.Received: 29.03.2023. Revised: 29.03.2023. Accepted: 08.04.2023. Published: 08.04.2023.Providing information about a child's oncological disease - a challenge for a pediatriconcologistPiotr Pawłowski1, Karolina Ziętara2, Justyna Michalczyk3, Magdalena Fryze4,Aneta Kościołek51Student, Faculty of Medicine, Medical University of Lublin, Student Scientific Associationat the Department of Nursing Developmenthttps://orcid.org/0000-0002-1197-7218|pawlowskipiotr56@gmail.com2Student, Faculty of Medicine, Medical University of Lublin, Student Scientific Associationat the Department of Psychologyhttps://orcid.org/0000-0002-6754-9263|kar.zietara@gmail.com3Student, Faculty of Medicine, Medical University of Lublin, Student Scientific Associationat the Department of Psychologyhttps://orcid.org/0000-0003-3372-0584|justynaelwiramichalczyk@gmail.com4Department of Psychology, Medical University of Lublinhttps://orcid.org/0000-0002-7746-0086|magdalenafryze@umlub.pl5Department of Nursing Development, Faculty of Health Sciences, Medical University ofLublinhttps://orcid.org/0000-0001-5712-1629|anetakosciolek@umlub.plAbstract:Introduction: The diagnosis of a serious illness in a family affects all members. The child isa special subject, as he cannot yet understand many aspects of life at such a high perceptuallevel as an adult. Communicating difficult information is part of the doctor's task and is one ofthe most difficult parts of the therapeutic process.The aim of the study: To analyze the methodology of communicating difficult informationto pediatric oncology patients.Material and method: Polish and English-language scientific literature from 2012 - 2022from databases such as PubMed, SCOPUS, Google Scholar, Web of Science was reviewed.Searches were conducted according to keywords: communicating difficult information,oncology, pediatrics, physician.Results and conclusions: One of the most well-known protocols for communicating difficultinformation is SPIKES. It describes the basic and necessary steps for properly informingparents and the child about the diagnosis, for example. Healthy siblings should also learnabout their brother's illness, but this task falls to the parents. Psycho-oncological support forboth the child and parents should be holistic, based on best practices, and tailored to thefamily's needs.Streszczenie:Wstęp: Diagnoza ciężkiej choroby w rodzinie oddziałuje na wszystkich członków. Dzieckojest podmiotem szczególnym, ponieważ nie potrafi jeszcze zrozumieć wielu aspektów życiana tak wysokim poziomie percepcyjnym jak osoba dorosła. Przekazywanie informacji trudnejnależy do zadań lekarza i jest jednym z najtrudniejszych elementów procesu terapeutycznego.Cel pracy: Analiza metodyki przekazywania trudnych informacji pediatrycznych pacjentówonkologicznychMateriał i metoda: Dokonano przeglądu polsko- i anglojezycznego piśmiennictwanaukowego z lat 2012 – 2022, pochodzącego z baz danych takich jak PubMed, SCOPUS,Google Scholar, Web of Science. Wyszukiwania przeprowadzono według słów kluczowych:przekazywanie trudnych informacji, onkologia, pediatria, lekarz.Wyniki i wnioski: Jedynym z najbardziej znanych protokołów przekazywania trudnychinformacji jest SPIKES. Opisuje on podstawowe i niezbędne kroki dla właściwegopoinformowania rodziców i dziecka na przykład o diagnozie. Zdrowe rodzeństwo równieżpowinno dowiedzieć się o chorobie brata, jednak zadanie to należy do rodziców. Wsparciepsychoonkologiczne zarówno dziecka jak i rodziców powinno być holistyczne, oparte nadobrych praktykach, dostosowane do potrzeb rodziny.IntroductionCommunicating unhelpful information is one of the most difficult phases of theoncologist's clinical work. This statement is particularly apt when the subject of the processbecomes the pediatric patient and his caregivers (parents/legal guardians). The population ofchildren and adolescents is a group with specific needs, depending mainly on the stage ofpsychomotor, emotional, and spiritual development. During any medical procedure (exceptfor emergencies), the overriding principal binding on medical personnel is the communicationtriad: medical professional - child-parent (Figure 1). It obliges to inform and communicate inparallel with two people, the parent, and the child. It is worth emphasizing the fact that it isthe child who is the direct recipient of our actions and should not be overlooked during theconsultation, even though the parents are usually the main decision maker [1]-[4].There are several protocols for communicating unhelpful messages or those that causemajor changes in the life of the patient and his family, these are ABCDE, BREAKS, orSPIKES. Standards have also been developed for assessing the quality of the communicateddata according to SORT (Strength of Recommendation Taxonomy), as well as mnemonics,for example, to facilitate the expression of empathy during the consultation such as NURSE[5]-[9].Figure 1. Communication triad in the doctor-parent-child (patient) relationship(source: https://www.mdpi.com/2227-9032/7/1/47/htm)The Aim of the workThe aim of the work is to present the methodology of disseminating information aboutan unfavorable diagnosis of cancer in a child.Material and methodsInformation on the research methodology is presented in Figure 2.Figure 1. Schematic of the study methodology (source: own elaboration).ResultsFor the purposes of the non-discussion study, one of the best-known protocols -SPIKES - was chosen. The expansion of the acronym is: S - Setting, P - Perception, I –Invitation, K – Knowledge, E – Emotions, S - Strategy and summary - Figure No. 3. For eachinterview, it is necessary to prepare appropriately, ensure a quiet, peaceful place, plan the timeto give all your attention to the patient and his parents, remind the basic data about the patientand his disease. In the next phase, the knowledge of the parents and the patient should beexamined, and the image and attitude toward the disease should be established. It is necessaryto move smoothly from the next phase - to jointly establish expectations, the extent of thedetail of information, followed by a summary of the course of the disease, to warn about theneed to provide unfavorable information (the so-called "warning shot") and to move to thecore of the information. After the unfavorable news resounded, the parents should be giventime to receive it, think about it, and experience individual emotions. After a short while, theinterviewer is obliged to let the recipient know that his feelings are important and show high-quality empathy. The end of the conversation is to summarize, reassert an understanding ofthe fullness of the situation, and arrange a plan and purpose for further action [5]-[9].Figure 3. SPIKES model (source: https://www.islanddocs.com.au/2020/07/20/breaking-bad-news/)Dialogue about the diagnosis should initially begin with an individual consultationwith the parents, so that they can work through their own emotions on their own, withoutthem erupting uncontrollably in front of the child, which could become a confirmation for thepatient of the parent's inability to cope with the fact of their illness and therefore inability tosupport them. Parents' reactions to their child's illnesses can vary widely. The three basictypes of caregivers' perceptions of the disease are harm, threat, and challenge. The mostdesirable is the last of these, then parents are mobilized to work together for the health of thechild, actively participate in the therapeutic process, and are a source of knowledge, hope, andsupport. It is natural to feel sadness, depression, fear, terror, and anger, but these emotionsshould not dominate the welfare of the child [10]-[13].In the next stage, information about the diagnosis should be given to the minor patientin the presence of the parents, using the protocol described above. The child's reaction to thedisease depends mainly on age, gender, the severity of the disease, physical condition, andpast experiences with the health care system. In the case described here, we are dealing with a15-year-old boy in whom the onset of cancer has led to a loss of perspective in life. He doesnot undertake any activities and is passive about the diagnosis and the disease. Thesebehaviors confirm the occurrence of a displacement reaction as an adaptive mechanism. Fromthe case description, it can also be suspected that the boy is strongly emotionally affected bythe loss of freedom, and has a sense of incapacitation, generating compensatory aggressivebehavior towards his parents. Younger, actively athletic siblings intensify the negativeemotions in the boy, through a comparative reaction. Any objections to the physical exertionassociated with the disease reinforce the 15-year-old's belief in the loss of previous activitiesand the high risk of no return of the pre-disease state (even more so as the cancer is related tothe musculoskeletal system). The patient is characterized by depression, and frustration,leading to the dysfunctional behaviors described [14], [15].Healthy siblings should also learn about their brother's illness, but this task belongs tothe parents. It is they, educated, skilled and competent, and ready to pass on the information,who should do so. Brothers and/or sisters of a sick child may feel lonely abandoned, feelanxiety and fearful of abandonment. They also often feel jealousy, lack of parental attention,and feel familial isolation. They usually take over the instrumental household duties of absentparents, which consequently leads to earlier psychological maturation, excessive feelings ofduty, and loss of childish happiness, in favor of "adult responsibilities" [16], [17].Psycho-oncological support for both the child and the parents should be holistic,preceded by an examination of the needs and deficits of the individual therapy links, andduring the therapy, the therapist should focus the parents' attention on their own positiveresources. Education in coping mechanisms, ways to deal with stress, and styles ofconversation with the child are also elements of work with the parent of a child with a disease.A caregiver with knowledge and skills is comfortable in situations of exposure to adverseenvironmental factors. The psycho-oncologist should also direct the caregiver's attentiontoward the healthy sibling, pointing out the need to maintain a "golden mean" between thecare of the child and one's own development, relationships, and rest. The therapist shouldsystematically carry out the prevention of caregiver burnout syndrome [18]-[20].Children need support in many aspects related to their own cancer. At the age offifteen, they usually deny the need for help and place a premium on independence, and highvitality, glorifying their autonomy above all else. A child in this age group is a demandingpartner in any conversation, sensing any negative emotions, lies, and falsehoods. Also, thelevel of language and understanding of the health situation can rank at different levels.Therefore, the specialist providing therapy should adjust to the language, the amount ofinformation, as well as the way it is conveyed to the individual's perceptual level. Childrenfeel, already at the spiritual level, that death is near, and therefore the psychologist shouldconduct discussions on its understanding, at a pace adapted to the patient's internal resources.Chronic fear of death in the long term can be a source of psychopathology and personalitydisorders. Therefore, prevention and early perceptual mastery of the concept of death isextremely important. Staying in the hospital also disrupts the child's psychosocialdevelopment, the psycho-oncologist should mobilize the child to interact with peers both inand out of the hospital environment. In the 1980s, van Eys constructed the "truly cured child"theory, confirming relational deficits during cancer. It assumes that full recovery is not onlythe absence of clinical symptoms, but also proper biopsychosocial functioning appropriate todevelopmental age [21]-[24].Conclusions1. Communicating difficult information is an important competency in the work of apediatric oncologist.2. 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Providing information about a child's oncological disease - a challenge for a pediatric oncologist

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Providing information about a child's oncological disease - a challenge for a pediatric oncologist

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