title: Stories of experiences of care for growth hormone deficiency: the CRESCERE project.
abstract: OBJECTIVE
  Growth hormone deficiency therapy is demanding for patients and caregivers. Teams engaged in the clinical management of growth hormone deficiency therapy need to know how families live with this condition, to provide an adequate support and prevent the risk of withdrawal from therapy.
  
  
  METHODS
  Using Narrative Medicine, testimonies from patients, their parents and providers of care were collected from 11 Italian centers. Narrations were analyzed throughout an elaboration of recurring words and expressions.
  
  
  RESULTS
  Although care management and outcomes were considered satisfying in the 182 collected narratives, recurring signals of intolerance among adolescents and the worry of not being well informed about side effects among parents are open issues.
  
  
  CONCLUSIONS
  Narratives found that communication issues could decrease adherence and influence the physicians' clinical practice.
authors.affiliation: ISTUD Foundation, Health Care & Wellbeing Area, Milan, Italy; ISTUD Foundation, Health Care & Wellbeing Area, Milan, Italy.
authors.forename: Maria G
authors.initials: MG
authors.lastname: Marini
authors.affiliation: ISTUD Foundation, Health Care & Wellbeing Area, Milan, Italy; ISTUD Foundation, Health Care & Wellbeing Area, Milan, Italy.
authors.forename: Paola
authors.initials: P
authors.lastname: Chesi
authors.affiliation: Paediatric Endocrinology Unit, Paediatric Department 'Sant'Orsola Malpighi' University Hospital, Bologna, Italy; Paediatric Endocrinology Unit, Paediatric Department 'Sant'Orsola Malpighi' University Hospital, Bologna, Italy.
authors.forename: Laura
authors.initials: L
authors.lastname: Mazzanti
authors.affiliation: Pediatrician Clinic, 'Luigi Sacco' Hospital, Milan, Italy; Pediatrician Clinic, 'Luigi Sacco' Hospital, Milan, Italy.
authors.forename: Laura
authors.initials: L
authors.lastname: Guazzarotti
authors.affiliation: Pediatrician Hospital 'Gaslini', Genoa, Italy; Pediatrician Hospital 'Gaslini', Genoa, Italy.
authors.forename: Teresa D
authors.initials: TD
authors.lastname: Toni
authors.affiliation: Paediatric Section, Department of Translational Medical Sciences 'Federico II', Naples, Italy; Paediatric Section, Department of Translational Medical Sciences 'Federico II', Naples, Italy.
authors.forename: Maria C
authors.initials: MC
authors.lastname: Salerno
authors.affiliation: Paediatric Section, Department of Translational Medical Sciences 'Federico II', Naples, Italy; Paediatric Section, Department of Translational Medical Sciences 'Federico II', Naples, Italy.
authors.forename: Annunziata
authors.initials: A
authors.lastname: Officioso
authors.affiliation: 'Meyer' Children Hospital, Florence, Italy; 'Meyer' Children Hospital, Florence, Italy.
authors.forename: Maria
authors.initials: M
authors.lastname: Parpagnoli
authors.affiliation: Paediatric Section, Hospital District Area n. 2, Senigallia, Italy; Paediatric Section, Hospital District Area n. 2, Senigallia, Italy.
authors.forename: Cristina
authors.initials: C
authors.lastname: Angeletti
authors.affiliation: General Hospital 'Giovanni XXIII', Bari, Italy; General Hospital 'Giovanni XXIII', Bari, Italy.
authors.forename: Maria F
authors.initials: MF
authors.lastname: Faienza
authors.affiliation: Pediatrician Clinic, Hospital District 'San Salvatore', L'Aquila, Italy; Pediatrician Clinic, Hospital District 'San Salvatore', L'Aquila, Italy.
authors.forename: Maria L
authors.initials: ML
authors.lastname: Iezzi
authors.affiliation: Department of Paediatrics, University of Messina, Messina, Italy; Department of Paediatrics, University of Messina, Messina, Italy.
authors.forename: Tommaso
authors.initials: T
authors.lastname: Aversa
authors.affiliation: Italian Association of Families with subjects with a GHD A.Fa.D.O.C., Vicenza, Italy; Italian Association of Families with subjects with a GHD A.Fa.D.O.C., Vicenza, Italy.
authors.forename: Cinzia
authors.initials: C
authors.lastname: Sacchetti
keywords: Narrative Medicine; growth hormone; illness; story; therapy