The family's experience of the child and/or teenager in palliative care: fluctuating between hope and hopelessness in a world changed by losses

Abstract

OBJECTIVES: to understand the family's experience of the child and/or teenager in palliative care and building a representative theoretical model of the process experienced by the family. METHODOLOGY: for this purpose the Symbolic Interactionism and the Theory Based on Data were used. Fifteen families with kids and/or teenagers in palliative care were interviewed, and data were collected through semi-structured interviews. RESULTS: after the comparative analysis of the data, a substantive theory was formed "fluctuating between hope and hopelessness in a world changed by losses", composed by: "having a life shattered ", "managing the new condition", "recognizing the palliative care" and "relearning how to live". Hope, perseverance and spiritual beliefs are determining factors for the family to continue fighting for the life of their child in a context of uncertainty, anguish and suffering, due to the medical condition of the child. Along the way, the family redefines values and integrates palliative care in their lives. CONCLUSION: staying with the child at home is what was set and kept hope of dreaming about the recovery and support of the child's life, but above all, what takes it away even though temporarily is the possibility of their child's death when staying within the context of the family.

Adolescentes em cuidados paliativos: um estudo fundamentado na teoria de Callista Roy

“…However, this moment is one of the most critical. 7,21 In this study, it was verified that the possibility of finitude and the development of a consciousness of death came to exist in a real way in the thoughts Consequently, the need for support and support was a constant.…”

“…This means that the family experiences a sense of loss in the course of the illness and not only after the child's death, which must be acknowledged by the caregiver. 7 As previously mentioned, adolescents with malignant neoplasia tend to become more sensitive and vulnerable to stimuli caused by the cancer situation and nonresponse of the treatment, interfering in the promotion of an effective response to these stimuli, which contributes, in a negative way, to their adaptation. Therefore, it is up to the health professionals, especially the nurse, as it remains longer alongside the patient and his family, to plan the integral care of these individuals and their families, in an orderly and scientific way, using the Nursing Process, based on a theoretical reference that in this study, will be the Callista Roy's Adaptation Model (CRAM) .…”

“…3,5 For the family, recognizing palliative care is an arduous task because of the uncertainty and apprehension about the future and the possibility of death. 3,7 Recognizing the benefits of palliative care does not mean accepting death, because this is a a reality that the family will never accept, but it is their way of dealing with losses along the way and maintaining their hope and perseverance to focus on managing child care. This means that the family experiences a sense of loss in the course of the illness and not only after the child's death, which must be acknowledged by the caregiver.…”

Compreendendo a relação de adolescentes, em cuidados paliativos, com o ciberespaço

“…Vale ressaltar que, os cuidados paliativos podem ser necessários desde o nascimento e prolongam por muitos anos em algumas crianças e, em outras, apenas por um curto período (Misko, 2012;Borghi, 2012;Borghi et al, 2014;Misko et al, 2015). E, ao abordarmos adolescentes com doenças que limitam a vida, porém não oncológicas, podem sobreviver por muitos anos chegando até a fase adulta, necessitando de atendimento e cuidado por todo o percurso de sua vida (Misko, 2012 (Strauss, Corbin, 2008), ou seja, a pesquisadora observou uma repetição e ausência de novos dados, mas também já tinha compreendido alguns conceitos que apareceram durante a pesquisa.…”

“…Considerando que o ciberespaço é um recurso muito importante, influenciando, muitas vezes positivamente a vida dos adolescentes(Farmer et al, 2009;Stanton, 2010;Borghi et al, 2018) e que os cuidados paliativos proporcionam melhor qualidade de vida às pessoas(Borghi et al, 2014;Misko et al, 2015). A partir do exposto, faz-se necessário buscar compreender a relação estabelecida entre os adolescentes, em cuidados paliativos, com o ciberespaço.3 objetivosObjetivos 45 3 OBJETIVOS…”