title: Continuity of care in children with special healthcare needs: a qualitative study of family's perspectives.
abstract: BACKGROUND
  To explore parents' experiences and perceptions on informational, management and relational continuity of care for children with special health care needs from hospitalization to the first months after discharge to the home.
  
  
  METHODS
  Semi-structured interviews and a focus group were carried out to capture parents' experiences and perceptions. Transcripts were analyzed using a directed approach to the qualitative content analysis.
  
  
  RESULTS
  16 families participated to this study: 13 were involved in interviews (10 face-to-face and 3 by phone) and 3 in a focus group, within 1-6 months after discharge from the University Hospital of Bologna (S.Orsola/Malpighi) and from hospitals of Bologna Province. To parents of children with special health care needs, the three domains of continuity of care were relevant in a whole but with different key elements during hospitalization, at discharge and after discharge. Moreover, empowerment emerged from parents' narratives as essential to help parents cope with the transition from the hospital setting to the new responsibilities connected with the home care of their child. Parent's perceptions about the family pediatrician concerned his/her centrality in the activation and coordination of the healthcare network. Moreover, parents exhibited different attitudes towards involvement in decision making: some wished and expected to be involved, others preferred not to be involved.
  
  
  CONCLUSIONS
  Care coordination for children with special care needs is a complex process that need to be attended to during the hospitalization phase and after discharge to the community. The findings of this study may contribute to elucidating the perceptions and experiences of parents with children with special health care needs about the continuity of care from hospital to community care.
authors.affiliation: Department of Biomedical and Neuromotor Sciences - DIBINEM, Division of Hygiene and Biostatistics, Alma Mater Studiorum University of Bologna, Via San Giacomo 12-40126, Bologna, Italy. elisa.zanello2@unibo.it.
authors.forename: Elisa
authors.initials: E
authors.lastname: Zanello
authors.affiliation: Department of Biomedical and Neuromotor Sciences - DIBINEM, Division of Hygiene and Biostatistics, Alma Mater Studiorum University of Bologna, Via San Giacomo 12-40126, Bologna, Italy. simona.calugi2@unibo.it.
authors.forename: Simona
authors.initials: S
authors.lastname: Calugi
authors.affiliation: Department of Biomedical and Neuromotor Sciences - DIBINEM, Division of Hygiene and Biostatistics, Alma Mater Studiorum University of Bologna, Via San Giacomo 12-40126, Bologna, Italy. paola.rucci2@unibo.it.
authors.forename: Paola
authors.initials: P
authors.lastname: Rucci
authors.affiliation: Department of Biomedical and Neuromotor Sciences - DIBINEM, Division of Hygiene and Biostatistics, Alma Mater Studiorum University of Bologna, Via San Giacomo 12-40126, Bologna, Italy. giulia.pieri5@unibo.it.
authors.forename: Giulia
authors.initials: G
authors.lastname: Pieri
authors.affiliation: Neonatology and Neonatal Intensive Care Unit S.Orsola Malpighi Hospital, Department of Medical and Surgical Sciences, University of Bologna, Via Massarenti 11-40138, Bologna, Italy. silviavandini@gmail.com.
authors.forename: Silvia
authors.initials: S
authors.lastname: Vandini
authors.affiliation: Neonatology and Neonatal Intensive Care Unit S.Orsola Malpighi Hospital, Department of Medical and Surgical Sciences, University of Bologna, Via Massarenti 11-40138, Bologna, Italy. giacomo.faldella@unibo.it.
authors.forename: Giacomo
authors.initials: G
authors.lastname: Faldella
authors.affiliation: Department of Biomedical and Neuromotor Sciences - DIBINEM, Division of Hygiene and Biostatistics, Alma Mater Studiorum University of Bologna, Via San Giacomo 12-40126, Bologna, Italy. mariapia.fantini@unibo.it.
authors.forename: Maria Pia
authors.initials: MP
authors.lastname: Fantini
mesh_terms: D000223:Adaptation, Psychological; D001294:Attitude to Health; D002648:Child; D002662:Child Health Services; D002908:Chronic Disease / Q000628:therapy; D003266:Continuity of Patient Care; D019988:Children with Disabilities; D017144:Focus Groups; D006302:Health Services Research; D006801:Humans; D007407:Interviews as Topic; D020380:Needs Assessment; D010290:Parents; D036301:Qualitative Research