title: Parental experiences of a developmentally focused care program for infants and children during prolonged hospitalization.
abstract: This study investigates parental experiences and perceptions of the care received during their child's prolonged hospitalization. It relates this care to the Beanstalk Program (BP), a develop-mentally focused care program provided to these families within an acute care hospital setting. A total of 20 parents (of children hospitalized between 1-15 months) completed the Measures of Processes of Care (MPOC-20) with additional questions regarding the BP. Scores rate the extent of the health-care provider's behaviour as perceived by the family, ranging from 'to a great extent' (7) to 'never' (1). Parents rated Respectful and Supportive Care (6.33) as highest, while Providing General Information (5.65) was rated lowest. Eleven parents participated in a follow-up, qualitative, semi-structured interview. Interview data generated key themes: (a) parents strive for positive and normal experiences for their child within the hospital environment; (b) parents value the focus on child development in the midst of their child's complex medical care; and (c) appropriate developmentally focused education helps parents shift from feeling overwhelmed with a medically ill child to instilling feelings of confidence and empowerment to care for their child and transition home. These results emphasize the importance of enhancing child development for hospitalized infants and young children through programs such as the BP.
authors.affiliation: Hospital for Sick Children, Toronto, Canada stephanie.so@sickkids.ca.
authors.forename: Stephanie
authors.initials: S
authors.lastname: So
authors.affiliation: Hospital for Sick Children, Toronto, Canada.
authors.forename: Alaine
authors.initials: A
authors.lastname: Rogers
authors.affiliation: Hospital for Sick Children, Toronto, Canada.
authors.forename: Catherine
authors.initials: C
authors.lastname: Patterson
authors.affiliation: Hospital for Sick Children, Toronto, Canada.
authors.forename: Wendy
authors.initials: W
authors.lastname: Drew
authors.affiliation: Hospital for Sick Children, Toronto, Canada.
authors.forename: Julia
authors.initials: J
authors.lastname: Maxwell
authors.affiliation: Hospital for Sick Children, Toronto, Canada.
authors.forename: Jane
authors.initials: J
authors.lastname: Darch
authors.affiliation: Hospital for Sick Children, Toronto, Canada.
authors.forename: Carolyn
authors.initials: C
authors.lastname: Hoyle
authors.affiliation: Hospital for Sick Children, Toronto, Canada.
authors.forename: Sarah
authors.initials: S
authors.lastname: Patterson
authors.affiliation: Hospital for Sick Children, Toronto, Canada.
authors.forename: Stacey
authors.initials: S
authors.lastname: Pollock-BarZiv
mesh_terms: D000328:Adult; D002648:Child; D002657:Child Development; D002662:Child Health Services; D002675:Child, Preschool; D006272:Health Facility Environment; D006760:Hospitalization; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D010290:Parents; D017060:Patient Satisfaction; D017064:Process Assessment, Health Care
keywords: Childhood illness; developmental care; family-centred care; parents