Abstract
BackgroundTo 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.MethodsSemi-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.Results16 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.ConclusionsCare 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s13052-015-0114-x) contains supplementary material, which is available to authorized users.
Highlights
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
Concerning parents’ education and training about their own child’s care, we found that the empowerment process aiming to provide specific skills to manage the child both during hospitalization and at home is another theme extremely relevant from parents’ perspective
The results indicated that pediatricians do not feel prepared to care for all types of conditions and this problem reduces the ability to implement effective medical home care
Summary
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. Children with special health care needs were defined by the Maternal and Child Health Bureau as those “who have a chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that generally required by children” [1]. This population represents a category with a low prevalence and incidence, a large proportion of Medical care for children with special healthcare needs often requires a variety of services, providers and programs to implement complex care plans. In the conceptualization developed by Reid and Haggerty, three types of continuity of care can be identified across healthcare settings, i.e. informational, management and relational [5,6]
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