A experiência das avós de crianças com câncer

Abstract

we recommend including grandparents in the context of care and in additional research.

The role of grandparents of children with cancer in the hospital

“…The findings hereby show the suffering of grandparents who have a grandchild with cancer, corroborating growing scientific evidence that points to this same reality (1,(7)(8)(17)(18) . The literature points out that grandparents are key elements of the parents' support network, being often the first and main choice, as this study also points out (19) .…”

A experiência dos avós de crianças hospitalizadas em Unidade de Terapia Intensiva Pediátrica

“…In the present study, this suffering was characterized by the phenomenon "finding themselves inside a storm". It has also been found in other studies about childhood cancer, in which grandparents noticed physical and psychological manifestations of suffering, such as anxiety, depression, and reduced quality of life (7)(8)14) Grandparents believe that keeping the family support role is more important than expressing their own feelings and suffering, thus living a situation of silenced suffering. This result was also found in grandparents who experience the premature birth of grandchildren, as well as the need for hospitalization in neonatal intensive care units -situations where they consider themselves to be the primary source of support for their children and in which their own suffering becomes irrelevant when related to the role of providing support to the new parents (15) .…”

“…Studies about the experience of grandparents when faced with a grandchild's illness, whether acute or chronic, show alarming data about their suffering (5)(6)(7)(8)(9)(10) . The intensity of the suffering can be understood as multiple sufferings: for the ill grandchild, for the other grandchildren, for their children, their family, and finally, their own suffering (7)(8) .…”

“…This suffering is associated with the illness of a loved one, and in this context, feeling impotent in the face of the illness, standing by as a witness of the suffering and being unable to ease it or prevent the illness (7)(8) . However, "grandparents are not usually considered a part of the family affected by suffering in the context of a serious illness" (6) .…”

Relacionamentos entre pais e profissionais da saúde no final de vida da criança com câncer hospitalizada: encontros que sobrevivem ao tempo

“…Estudos mostraram a importância dos cuidados paliativos para estabelecer atenção para enlutados, pois cuidadores que tiveram longo e intenso processo de doença apresentaram intensas reações de sofrimento emocional (Dumont, Dumont, Mongeau, 2008;Schultz, Boerner, Herbert, 2008 (Alam et al, 2012;Davies, 2004;Rando, 1986). Por isso, é um tipo de luto considerado separado dos demais, pois pode provocar reações intensas e prolongadas que não necessariamente significam complicações, mas merece extrema atenção pelo impacto negativo na adaptação dos pais e demais familiares, como os irmãos e os avós, por exemplo, no período pós-perda (Mendes-Castillo, Bousso, , 2016Barrera et al, 2010Barrera et al, , 2009Barrera et al, , 2007.…”