Measuring parents' perspective on continuity of care in children with special health care needs.
BACKGROUND
Children with special health care needs are an exponentially growing population needing integrated health care programmes that involve primary, community, hospital and tertiary care services. The aims of the study are (1) to develop and validate the Special Needs Kids Questionnaire (SpeNK-Q) designed to measure parents' perspective on continuity of care for children with special health care needs and (2) to evaluate the continuity of care based on parental experiences in this population.


METHODS
SpeNK-Q was derived from a previous qualitative study and was based on Haggerty's constructs of informational, management and relational continuity. Parents of preterm birth children completed the 20-item SpeNK-Q at the second or subsequent planned follow-up visit after the child's hospital discharge. Principal component analysis was used to examine the structure of the instrument.


RESULTS
Principal component analysis of 101 questionnaires administered allowed us to identify five factors explaining 60.2% of item variance: informational continuity; coordination of care; continuity of family-paediatrician relationship; family support; information on care plan.


CONCLUSIONS
SpeNK-Q proved to be a psychometrically promising instrument. Its utilisation could improve the identification of areas for service development, the delivery of coordinated care and support policy makers in redesigning integrated services.
Division of Hygiene and Biostatistics, Department of Biomedical and Neuromotor Science - DIBINEM, Alma Mater Studiorum University of Bologna, Bologna, Italy.
Paola
P
Rucci
Faculty of Health and Human Sciences, School of Nursing and Midwifery, Plymouth University, Plymouth, UK; Faculty of Health Science, School of Nursing and Midwifery, Curtin University, Kent Street, Bentley, WA 6102, Australia.
Jos
J
Latour
Division of Hygiene and Biostatistics, Department of Biomedical and Neuromotor Science - DIBINEM, Alma Mater Studiorum University of Bologna, Bologna, Italy.
Elisa
E
Zanello
Division of Hygiene and Biostatistics, Department of Biomedical and Neuromotor Science - DIBINEM, Alma Mater Studiorum University of Bologna, Bologna, Italy.
Simona
S
Calugi
Neonatology and Neonatal Intensive Care Unit, Department of Medical and Surgical Sciences, S.Orsola Malpighi Hospital, University of Bologna, Bologna, Italy.
Silvia
S
Vandini
Neonatology and Neonatal Intensive Care Unit, Department of Medical and Surgical Sciences, S.Orsola Malpighi Hospital, University of Bologna, Bologna, Italy.
Giacomo
G
Faldella
Division of Hygiene and Biostatistics, Department of Biomedical and Neuromotor Science - DIBINEM, Alma Mater Studiorum University of Bologna, Bologna, Italy.
Maria Pia
MP
Fantini
children with preterm birth; factor analysis; family support; integrated care; parents’ experience; special health care needs