Misko Maira Deguer, dos Santos Maiara Rodrigues, Ichikawa Carolliny Rossi de Faria, de Lima Regina Aparecida Garcia, Bousso Regina Szylit
Departamento de Enfermagem, Universidade Federal de São Carlos, São Carlos, SP, BR.
Escola de Enfermagem, Universidade de São Paulo, São Paulo, SP, BR.
Rev Lat Am Enfermagem. 2015 May-Jun;23(3):560-7. doi: 10.1590/0104-1169.0468.2588.
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.
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.
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.
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.
了解家庭在儿童和/或青少年姑息治疗中的经历，并构建一个代表家庭所经历过程的理论模型。
为此，采用了符号互动主义和基于数据的理论。对15个有处于姑息治疗中的儿童和/或青少年的家庭进行了访谈，并通过半结构化访谈收集数据。
在对数据进行比较分析后，形成了一个实质性理论“在因失去而改变的世界中在希望与绝望之间波动”，由“生活破碎”、“应对新状况”、“认识姑息治疗”和“重新学习如何生活”组成。希望、毅力和精神信仰是家庭在孩子因病情而处于不确定、痛苦和折磨的情况下继续为孩子的生命而抗争的决定性因素。在此过程中，家庭重新定义价值观并将姑息治疗融入他们的生活。
在家陪伴孩子是设定并保持对孩子康复和生命支持的希望的事情，但最重要的是，当处于家庭环境中时，孩子死亡的可能性即使是暂时的也会夺走这种希望。
