Experiences of mothers and fathers of children and adolescents with cancer: a phenomenological-existential Heideggerian approach

Abstract

This study was based in Heideggerian existential phenomenology, and aims to understand the experiences of mothers/fathers of children and adolescents with cancer. A total of 13 parents of eight patients attended by a charitable association participated, between December 2011 and March 2012. They were asked the question: how has it been for you to experience having a child with cancer? Three issues emerged from the analysis: experiencing the being-present and the being-absent of the loved one; sharing the existential sadness of the child; and learning with the ill child. It was evidenced that these parents experience unexpected transformations in their routine, triggering uncertainties, fears and distress. The same distress that makes them suffer in this world, however, makes them understand the existential condition of the child and of themselves. It is essential that professionals - such as those of nursing - transpose the technical-scientific care and seek to understand these existential needs with a view to offering comprehensive and humanized care.

Perspectivas adotadas pelos cuidadores na interação com a criança institucionalizada

“…As cuidadoras amadurecem como pessoas, extraindo algo positivo das experiências dolorosas, imprimindo assim um novo significado à sua própria existência. 12 Diante da vivência dolorosa, o cuidador passa a ressignificar seu modo de ser, buscando um sentido autêntico para sua vida. A partir daí, ocorre um "esforço de mudança comportamental em que o indivíduo assume novos padrões de visão".…”

Online information related to childhood cancer and COVID-19 pandemic: a thematic analysis

“…On most sites, the attempt to allay concern about the potential risk of COVID-19 emerged on the grounds that these families were already sufficiently informed and used to protecting their children from infection. Despite the significant knowledge that these families acquire to protect their children, attitudes of minimization reinforce the feeling of loneliness and abandonment in the face of the pilgrimage in search of healing or preserving the child's life, in addition to not meeting the value of the human being and possibilities of family functioning (45) . The recognized role of parental protection assumed by these families is also noteworthy, as their child is perceived as vulnerable, even years after the completion of cancer therapy.…”

Representation of mothers about the condition of having a child with cancer / Representação de mães sobre a condição de ter um filho com câncer

“…In spite of this, the involvement of the disease in the family group indicates a hard and complex experience, with uncertainties, several feelings, physical and psychological restrictions. 4 In this context, the social group under study expresses through their personal realities and shared experiences, several representations in common, such as shared feelings: the feeling of helplessness about the revelation of the disease and the fear of death, thus projecting the process of empathy.…”

“…Besides having a negative impact on people's lives, not only because of the social and economic repercussions of the disease, but also because of the suffering that the patient and the family begin to experience. 4 With the impact and the difficulties imposed by the disease, the mother becomes the direct caregiver of her child. Therefore, being the mother of a child with cancer is to experience the construction of new roles, permeated by the duty and meaning attributed to cancer.…”