title: 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: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors: Departamento de Enfermagem, Universidade Federal de São Carlos, São Carlos, SP, BR.
authors: Maira Deguer
authors: MD
authors: Misko
authors: Escola de Enfermagem, Universidade de São Paulo, São Paulo, SP, BR.
authors: Maiara Rodrigues
authors: MR
authors: dos Santos
authors: Brasil, BR.
authors: Carolliny Rossi de Faria
authors: CR
authors: Ichikawa
authors: Escola de Enfermagem de Ribeirão Preto, Universidade de São Paulo, Ribeirão Preto, SP, BR.
authors: Regina Aparecida Garcia
authors: RA
authors: de Lima
authors: Escola de Enfermagem, Universidade de São Paulo, São Paulo, SP, BR.
authors: Regina Szylit
authors: RS
authors: Bousso
mesh_terms: D000293:Adolescent; D001601:Bereavement; D002648:Child; D002675:Child, Preschool; D005190:Family / Q000523:psychology*; D005192:Family Health; D005260:Female; D065026:Hope; D006801:Humans; D008297:Male; D010166:Palliative Care; D055815:Young Adult