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Resilience and Death: the Nursing Professional in the Care of Children and Adolescents with Life-Limiting Illnesses

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Resilience and Death: the Nursing Professional in the Care of Children and Adolescents with Life-Limiting Illnesses DOI: 10.1590/1413-812320141912.18862013 4869 Resilience and death: the nursing professional in the care FREE THEMES of children and adolescents with life-limiting illnesses Rosilene Aparecida dos Santos 1 Martha Cristina Nunes Moreira 2 Abstract The purpose of this article is to analyze the resilience of the nursing staff in providing care for children and adolescents with chronic diseas- es, including coping with their deaths. The par- ticipants of this qualitative research were nursing professionals working in the pediatric ward of a hospital in the city of Rio de Janeiro, Brazil. The data collection was obtained by applying the resil- ience scale, by returning the scales in groups, and by semi-structured interviews. The relationship between professional resilience and coping with the process of children and adolescent’s deaths stood out in the analysis based on data obtained from group and individual interviews. The care given to children and adolescents with life-lim- iting illnesses triggers resilience-related answers concerning alternatives that oscillate between individual reactions (religious and psychological support), and the search for an incipient collec- tive support based on personal relationships. This study points out that this subject must be strategi- cally handled to train this professional, who must 1 Unidade de Internação be able to rely on support from the collective envi- Pediátrica, Instituto Nacio- nal de Saúde da Mulher, da ronment, presumed within the professional health Criança e do Adolescente care training and in the management of human- (IFF), Fiocruz. Av. Rui ization at the hospital. Barbosa 716, Flamengo. 22250-020 Rio de Janeiro Key words Resilience, Chronic disease, Death, RJ Brasil. Child, Adolescent, Nursing [email protected] 2 Programa Saúde & Brincar, Departamento de Pediatria, IFF, Fiocruz. 4870 Introduction life crisis and it implies that the traumatized one must overcome and recompose himself. It is the Santos RA, Moreira MCN Moreira RA, Santos The process or living and dying and the health ability to evolve, to keep focusing in the future re- care professional practices related to it are ob- gardless the destabilizing events, hard living con- jects of works in epidemiology, history, and ditions, and sometimes severe trauma. It is the anthropology fields1-5. These works guide us in universal human ability to cope with crisis and to the discussion and understanding of a hospital- overcome it, to learn or even to change with life’s ization scenario with children and adolescents inevitable adversities and to become stronger af- facing chronic diseases, within a dialog between ter overcoming the problem11. care and death. Although there is much discus- Resilience is a skill that every human being sion, the care provided to the health/illness pro- has, at some level. It is a resource that is partial- cess is still perceived as an enigma for health care ly inherent but also learned along the time, once professionals when the outcome is death or life resilience, according to Cyrulnik12, “is weaved” limitation. throughout the life cycle. Resilience can grow In the Middle Age, end of life was a natu- with external situations and conditions and can ral process and the sick one remained in his or be promoted with the support of people or in- her family environment until death. The death stitutions11. causes were usually a result from infectious dis- The professional resilience is understood as eases. However, in the 20th century, the progress the ability to face difficulties developed in the care made by medicine introduces a new perception to life and death process resulted from chronic of death as it becomes institutionalized with illnesses. They are skills generated from the con- the concern focused on human longevity and tact with those they provide care, from the beliefs economic and capitalist interests. Thus, death and values of the professional, built along face to becomes to be part of the hospital setting, but face relationships, generating meanings that may health care professionals are not yet prepared to or may not be linked to actions within reality. handle such scenario6. Although death is a part of This study strives to contribute to the collec- the daily lives of nursing professionals, they show tive health field and to the association with other difficulties in providing care to patients under- studies that explore the meanings of death and going dying process. The responsibility for the of its process within the collective health scope, care seems to be inherent to the desire to cure, in children and adolescents with chronic diseas- generating conflict and suffering for such profes- es. The difference comes from the association of sional7. The professional still has “to manage the this topic to the study on the nursing profession- expression of emotions of all those involved in al resilience within the health/disease/care circuit the dying process, such as of the patients, fami- of children and adolescents with health chronic lies, and of the health care staff itself”8. conditions. Moreover, it is relevant to associate During a research conducted with a nursing this discussion with an epidemiological scenario staff of a pediatric ward in a hospital of reference in which the health chronic conditions, particu- located in the city of Rio de Janeiro, we were larly the rare diseases, genetic based ones, such as surprised by the association between resilience syndromes, which can abbreviate life, stand out discussion and care provided to children and ad- in the morbidity and mortality profile of chil- olescents with chronic diseases9. The discussion dren and adolescents13-15. This article strives to on “managing” death situations stood out in this contribute with the denaturalization of the idea analysis, becoming then object of analysis in this that suffering/death are part of the health care article, associated to the nursing staff process of work dynamics16. building resilience. The word resilience, etymologically speak- ing, means to be elastic. It is a term commonly Material and methods associated to physics and mechanics as “quality of the material resistance to shock, to tension, to This article is part of a larger research, approved pressure that enables it to come back to its initial by the IFF/Fiocruz Ethics Research Committee, shape or position”10. based on the investigation of meanings in build- In the psychology field, resilience is under- ing resilience concerning nursing profession- stood as an individual feature, and to be resilient als taking care of children and adolescents with means to recover, move on after a disease, trau- chronic diseases. The original research counted ma or a stressful situation. It means to overcome on a first quantitative stage focused on the ap- 4871 Ciência & Saúde Coletiva, 19(12):4869-4878, 2014 19(12):4869-4878, Coletiva, & Saúde Ciência plication of the Resilience Scale17. This article is segment may often represent that growing up composed of selected quantitative analysis gener- and developing approximates them to death and ated from the second stage, which focused on the to the symbolic marks related to it. These marks association of individual and group interviews. mediate the face to face relationships and inter- The subjects of the research were 20 nursing actions in a relational environment mediated by professionals working in two pediatric wards of body marks, physical limitations, coping with a mid and high complexity hospital, located in acute symptoms of chronic diseases, demarcat- the city of Rio de Janeiro, Brazil. Many of the sit- ing stigmas22. uations are related to chronic diseases complica- Rodrigues, concerning the meaning of death tions. The names of the subjects are fictitious to of adults and its difference regarding the process preserve their anonymity. This professional cat- in children, states: egory was chosen as they hold features focused Death of an adult person usually means pain on the proximity and intensity of the contact and and loneness for those who stay: a real sore that care provided to patients and families. Moreover, endangers social life. It is different, and lighter in their work involve aspects toward the welcoming, general, the reaction that a death of a child has approach, interaction, management, and health on the collective conscious. In fact, the community education, and they represent a numerical and has invested a little more than hope on them. Its intervention centrality in the health care during mark could not be attributed to them soon enough. hospitalization. It does not see itself on them, so it does not really In the first stage, a tool called “Resilience feel the pain. It is regarded as a smaller death, as Scale”17 was applied on 56 subjects to identify a smaller infra-social phenomenon to preserve the those who had high scores, who were more re- expression5. silient. This criterion was used to select the sub- When the author compares death of adults jects who were going to be interviewed in the with of children, he highlights the less remark- second stage. The study selected 37 subjects for able feature to death of the latter, attributing a the individual interviews. After conducting 20 lighter reaction to their death. However, the au- semi-structured interviews, the theoretical sat- thor’s analysis marked by an externality to the pe- uration level was reached for pre-categories or diatric care field, places him in a line of thought new categories18. The technical analysis of the of which position is associated with the ideals of material was based on the adaptation of Bardin’s a productive insertion of the child in an extended context analysis19. The study selected themes with history; thus, devaluing the acknowledgment of meanings related to the analytical object, giving the child as an individual staying in the present, priority to structures of relevance and values.
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