Abstract
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. 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. 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. 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.
Highlights
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
This article is published in a peer reviewed section of the International Journal of Integrated Care
The prevalence of non-institutionalised children with special health care needs aged 0–17 has been estimated as 12% in 1999–2000 in USA [3] and has been growing exponentially in the past decades due to novel treatments in life-threatening paediatric conditions that increase the survival of children with serious congenital or acquired diseases
Summary
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 prevalence of non-institutionalised children with special health care needs aged 0–17 has been estimated as 12% in 1999–2000 in USA [3] and has been growing exponentially in the past decades due to novel treatments in life-threatening paediatric conditions that increase the survival of children with serious congenital or acquired diseases. This success factor within paediatrics has considerable societal costs and important financial and organisational consequences for health care planning [4]. In high-income countries, progress in medical care has led to improved survival and long-term outcome among preterm infants with very low birth weight, but considerable risks for child health and development remain a matter of concern [6,7]
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