Children and adolescents with cancer under palliative care: experience of family members

Abstract

RESUMOEste estudo teve por objetivo investigar a experiência dos familiares no cuidar de crianças e adolescentes com câncer, em cuidados paliativos, particularmente nos cuidados ao fi nal da vida. Trata-se de uma pesquisa descritiva e exploratória, com análise qualitativa dos dados. Participaram do estudo 14 familiares, cuidadores de crianças e adolescentes que morreram por câncer, em acompanhamento em um hospital escola no estado de São Paulo. Os dados empíricos foram organizados ao redor de três temas: "O impacto do agravamento da doença na dinâmina familiar", "Comunicação de más notícias" e "A vivência da família diante dos cuidados paliativos". O estudo mostrou-se relevante para a assistência à criança e ao adolescente com câncer no fi m da vida, pois as vivências complexas, dinâmicas e abrangentes das famílias no cuidado da criança e do adolescente poderão contribuir para a compreensão do processo de cuidar à luz dos fundamentos dos cuidados paliativos. Descritores: Cuidados Paliativos; Criança; Câncer; Família; Enfermagem. ABSTRACT This study's objective was to investigate the experience of family members of children and adolescents with cancer in terms of palliative care, especially the care provided in the fi nal stage of life. This is a descriptive and exploratory study with qualitative data analysis. A total of 14 family members participated in the study. They were the caregivers of children and adolescents with cancer who died, and were followed up by a teaching hospital in the state of São Paulo. Empirical data were organized around three themes: "The impact of the worsening of the disease on the family's dynamics", "Communicating bad news" and "The experience of the family concerning palliative care". This study is relevant to children and adolescents with cancer in the end-oflife care because the complex, dynamics, and comprehensive experiences of families in the care of children and adolescents in this period can contribute to better understanding of the process of providing care in light of the fundamentals of palliative care. Key words: Palliative Care; Child; Cancer; Family; Nursing. RESUMENEl presente estudio tiene como objetivo investigar la experiencia de los familiares en el cuidado de niños y adolecentes con cáncer, en cuidados paliativos, particularmente en los cuidados al fi nal de la vida. Se trata de una investigación de naturaleza descriptiva y exploratoria, con análisis cualitativo de los datos. Participaron del estudio 14 familiares, cuidadores de niños y adolecentes que murieron de cáncer en acompañamiento en un hospital universitario en São Paulo. Los datos empíricos fueron organizados alrededor de tres temas: "El impacto del agravamiento de la enfermedad en la dinámica familiar", "La comunicación de malas noticias" y "La vivencia de la familia delante de los cuidados paliativos". Este estudio demostró ser relevante para la asistencia al niño y al adolecente con cáncer en el fi n de la vida, ya que, las vivencias de las familias en el cuidado al niño y al adolecente podrán contrib...

Repercussões Na Vida De Cuidadores De Crianças E Adolescentes Com Doença Oncológica

“…O adoecer é um processo difícil e que impõe ao paciente diversas mudanças, devido a sua gravidade, perdas e ou afastamento das rotinas, que, por vezes, geram conflitos no ambiente familiar (4,(13)(14) . Nesta pesquisa, os participantes relataram que desde o momento do diagnóstico houve modificações na estrutura familiar, como, por exemplo, o afastamento do lar e dos demais membros da família.…”

Oncological homecare: family and caregiver perception of palliative care

“…In addition to being a space which enables protection, where its members feel that they belong to a group united by bonds of love and affection, it has also been defined as a health system for its members. 8 Nonetheless, it could be observed that coping with this disease in the family context depends on factors that are closely associated with the following: the stage of life in which a family finds itself; the role played by its sick member; the implications that the impact of a certain disease, in this case cancer, has on each of them; and the way in which it organizes itself during the disease period. 9 Health care becomes essential when the greater perspective of care for patients in palliative care is taken into consideration.…”

Mothers' perception on recreational activities in the treatment of childhood cancer

“…That attitude is demonstrated through prayers, attributing to God the hope that the lived experience will get better. Religiousness and faith are present in people's lives, especially in the most difficult moments [17][18]. In the course of the study, the reports evidenced that mothers carry that faith with them and try to pass on to their children, since it gives them strength to follow in the walk.…”

“…In view of the exposed, religious practices shall be respected in therapeutic settings, in order to allow a better psychological adaptation of the mother, minimizing the effects of stressful events and reducing depressive feelings that may arise due to the child's health-illness process [17,20]. In this way, the caring process follows from the child to his/ her accompanying mother, and needs spiritual and religious support during that period of adaptation.…”

“…Thus, it is through the spiritual dimension that the mother feels protected, welcomed and able to face the adversities of her child's illness, finding in faith and in the religiosity the necessary support to proceed with the treatment of the child, accept the situations experienced and overcome the obstacles [17,21].…”