title: [An open heart: experiences of the parents of children with congenital heart disease].
abstract: OBJECTIVE
  To explore, from a gender perspective, the experiences of mothers and fathers of children with congenital heart disease at the time of diagnosis, including the opinions of medical staff taking care of these children and their families.
  
  
  METHODS
  Qualitative research. Four individual interviews with medical staff and four focus groups with mothers and fathers living in Valencia Region (Spain) were carried out. Participants were selected by purposive sampling. The discourse analysis was triangulated between techniques and researchers and the results were verified with mothers, fathers and medical staff.
  
  
  RESULTS
  Mothers and fathers differed in the way they expressed their emotions and in how they accepted the diagnosis of a serious illness in their child. However, both parents expressed the need for psychological support and highly appreciated the informal support from other parents with similar experiences.
  
  
  CONCLUSIONS
  The experience of the disease in a child is experienced differently by mothers and fathers. Health servies should pay attention to the psychological well-being of families, by including peer support groups and patient associations, which can play an important role as health assets.
authors: Área de Enfermedades Raras, Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunidad Valenciana (FISABIO-Salud Pública), Valencia, España.
authors: Lucía
authors: L
authors: Páramo-Rodríguez
authors: Dirección General de Salud Pública, Generalitat Valenciana, Valencia, España.
authors: Rosa
authors: R
authors: Mas Pons
authors: Área de Enfermedades Raras, Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunidad Valenciana (FISABIO-Salud Pública), Valencia, España. Electronic address: cavero_cla@gva.es.
authors: Clara
authors: C
authors: Cavero-Carbonell
authors: Área de Enfermedades Raras, Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunidad Valenciana (FISABIO-Salud Pública), Valencia, España; CIBER de Epidemiología y Salud Pública (CIBERESP), España.
authors: Carmen
authors: C
authors: Martos-Jiménez
authors: Dirección General de Salud Pública, Generalitat Valenciana, Valencia, España; CIBER de Epidemiología y Salud Pública (CIBERESP), España.
authors: Óscar
authors: Ó
authors: Zurriaga
authors: Dirección General de Salud Pública, Generalitat Valenciana, Valencia, España.
authors: Carmen
authors: C
authors: Barona Vilar
mesh_terms: D000328:Adult; D002648:Child; D002675:Child, Preschool; D004644:Emotions; D005220:Fathers / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006330:Heart Defects, Congenital / Q000523:psychology*; D006801:Humans; D007223:Infant; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D010287:Parent-Child Relations; D011368:Professional-Family Relations; D036301:Qualitative Research; D012944:Social Support; D012959:Socioeconomic Factors; D013030:Spain
keywords: Apoyo; Cardiopatía congénita; Congenital heart disease; Estudio cualitativo; Gender perspective; Percepciones; Perception; Perspectiva de género; Research qualitative; Support