title: Impact of a child with congenital anomalies on parents (ICCAP) questionnaire; a psychometric analysis.
abstract: BACKGROUND
  The objective of this study was to validate the Impact of a Child with Congenital Anomalies on Parents (ICCAP) questionnaire. ICCAP was newly designed to assess the impact of giving birth to a child with severe anatomical congenital anomalies (CA) on parental quality of life as a result of early stress.
  
  
  METHODS
  At 6 weeks and 6 months after birth, mothers and fathers of 100 children with severe CA were asked to complete the ICCAP questionnaire and the SF36. The ICCAP questionnaire measures six domains: contact with caregivers, social network, partner relationship, state of mind, child acceptance, and fears and anxiety. Reliability (i.e. internal consistency and test-retest) and validity were tested and the ICCAP was compared to the SF-36.
  
  
  RESULTS
  Confirmatory factor analysis resulted in 6 six a priori constructed subscales covering different psychological and social domains of parental quality of life as a result of early stress. Reliability estimates (congeneric approach) ranged from .49 to .92. Positive correlations with SF-36 scales ranging from .34 to .77 confirmed congruent validity. Correlations between ICCAP subscales and children's biographic characteristics, primary CA, and medical care as well as parental biographic and demographic variables ranged from -.23 to .58 and thus indicated known-group validity of the instrument. Over time both mothers and fathers showed changes on subscales (Cohen's d varied from .07 to .49), while the test-retest reliability estimates varied from .42 to .91.
  
  
  CONCLUSIONS
  The ICCAP is a reliable and valid instrument for clinical practice. It enables early signaling of parental quality of life as a result of early stress, and thus early intervention.
authors.affiliation: Intensive Care, Department of Pediatric Surgery, Erasmus MC - Sophia Children's Hospital, Erasmus University Medical Center Rotterdam, the Netherlands. p.mazer@erasmusmc.nl
authors.forename: Petra
authors.initials: P
authors.lastname: Mazer
authors.forename: Saskia J
authors.initials: SJ
authors.lastname: Gischler
authors.forename: Hans M
authors.initials: HM
authors.lastname: Koot
authors.forename: Dick
authors.initials: D
authors.lastname: Tibboel
authors.forename: Monique
authors.initials: M
authors.lastname: van Dijk
authors.forename: Hugo J
authors.initials: HJ
authors.lastname: Duivenvoorden
mesh_terms: D000328:Adult; D000013:Congenital Abnormalities; D019988:Children with Disabilities; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010290:Parents / Q000523:psychology*; D011446:Prospective Studies; D011594:Psychometrics; D011788:Quality of Life; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D055815:Young Adult