Impact of a child with congenital anomalies on parents (ICCAP) questionnaire; a psychometric analysis

Petra Mazer, Saskia J Gischler, Hans M Koot, Dick Tibboel, Monique van Dijk, Hugo J Duivenvoorden, Petra Mazer, Saskia J Gischler, Hans M Koot, Dick Tibboel, Monique van Dijk, Hugo J Duivenvoorden

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.

Conclusion: 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.

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Flowchart.

References

    1. Statistics Netherlands MoHWaS . Vademecum of health statistics of the Netherlands. Voorburg/Heerlen; 2003.
    1. Hazebroek FW, Bouman NH, Tibboel D. The neonate with major malformations: experiences in a university children's hospital in the Netherlands. Seminars in Pediatric Surgery. 2001;10:222–229. doi: 10.1053/spsu.2001.26846.
    1. Bouman NH. PhD thesis. Sophia Childrens Hospital, Erasmus University, Department of child and adolescent psychiatry; 1999. The psychosocial adjustment of children with major congenital abdominal anomalies.
    1. Hauser-Cram P, Warfield ME, Shonkoff JP, Krauss MW, Sayer A, Upshur CC. Children with disabilities: a longitudinal study of child development and parent well-being. Monographs of the Society for Research in Child Development. 2001;66:i–viii.
    1. Poley MJ, Stolk EA, Tibboel D, Molenaar JC, Busschbach JJ. Short term and long term health related quality of life after congenital anorectal malformations and congenital diaphragmatic hernia. Archives of Disease in Childhood. 2004;89:836–841. doi: 10.1136/adc.2002.016543.
    1. Hunfeld JA, Wladimiroff JW, Passchier J, Venema-Van Uden MU, Frets PG, Verhage F. Emotional reactions in women in late pregnancy (24 weeks or longer) following the ultrasound diagnosis of a severe or lethal fetal malformation. Prenatal Diagnosis. 1993;13:603–612. doi: 10.1002/pd.1970130711.
    1. Hunfeld JA, Wladimiroff JW, Verhage F, Passchier J. Previous stress and acute psychological defence as predictors of perinatal grief–an exploratory study. Social Science and Medicine. 1995;40:829–835. doi: 10.1016/0277-9536(94)E0118-C.
    1. Korenromp MJ. PhD thesis. Utrecht University, Department of perinatology and Gynaecology, University Medical Centre Utrecht; 2006. Parental adaptation to termination of pregnancy for fetal anomalies.
    1. Leuthner SR, Bolger M, Frommelt M, Nelson R. The impact of abnormal fetal echocardiography on expectant parents' experience of pregnancy: a pilot study. Journal of Psychosomatic Obstetrics and Gynaecology. 2003;24:121–129. doi: 10.3109/01674820309042809.
    1. Nicholas AM, Lewin TJ. Grief reactions of parental couples: congenital handicap and cot death. Medical Journal of Australia. 1986;144:292–295.
    1. Hunfeld JA, Tempels A, Passchier J, Hazebroek FW, Tibboel D. Brief report: parental burden and grief one year after the birth of a child with a congenital anomaly. Journal of Pediatric Psychology. 1999;24:515–520. doi: 10.1093/jpepsy/24.6.515.
    1. Bradbury ET, Hewison J. Early parental adjustment to visible congenital disfigurement. Child: Care, Health and Development. 1994;20:251–266. doi: 10.1111/j.1365-2214.1994.tb00388.x.
    1. Cahill BM, Glidden LM. Influence of child diagnosis on family and parental functioning: Down syndrome versus other disabilities. American Journal of Mental Retardation. 1996;101:149–160.
    1. Davis CC, Brown RT, Bakeman R, Campbell R. Psychological adaptation and adjustment of mothers of children with congenital heart disease: stress, coping, and family functioning. Journal of Pediatric Psychology. 1998;23:219–228. doi: 10.1093/jpepsy/23.4.219.
    1. Ludman L, Spitz L, Lansdown R. Intellectual development at 3 years of age of children who underwent major neonatal surgery. Journal of Pediatric Surgery. 1993;28:130–134. doi: 10.1016/S0022-3468(05)80257-X.
    1. Rosenthal ET, Biesecker LG, Biesecker BB. Parental attitudes toward a diagnosis in children with unidentified multiple congenital anomaly syndromes. American Journal of Medical Genetics. 2001;103:106–114. doi: 10.1002/ajmg.1527.
    1. Goldberg D. Manual of the General Health Questionnaire. Windsor, NFER; 1978.
    1. Koeter MWJ, Ormel J. General Health Questionnaire Nederlandse bewerking Handleiding. Lisse: Swets & Zeitlinger; 1991.
    1. Hunfeld JA, Wladimiroff JW, Passchier J, Uniken Venema-van Uden M, Frets PG, Verhage F. Reliability and validity of the Perinatal Grief Scale for women who experienced late pregnancy loss. British Journal of Medical Psychology. 1993;66:295–298.
    1. Toedter LJ, Lasker JN, Alhadeff JM. The Perinatal Grief Scale: development and initial validation. American Journal of Orthopsychiatry. 1988;58:435–449.
    1. Ens-Dokkum MH, Schreuder AM, Veen S, Verloove-Vanhorick SP, Brand R, Ruys JH. Evaluation of care for the preterm infant: review of literature on follow-up of preterm and low birthweight infants. Report from the collaborative Project on Preterm and Small for Gestational Age Infants (POPS) in The Netherlands. Paediatric and Perinatal Epidemiology. 1992;6:434–459. doi: 10.1111/j.1365-3016.1992.tb00787.x.
    1. Gyler L, Dudley M, Blinkhorn S, Barnett B. The relationship between psychosocial factors and developmental outcome for very low and extremely low birthweight infants: a review. Australian and New Zealand Journal of Psychiatry. 1993;27:62–73. doi: 10.3109/00048679309072125.
    1. Vohr BR, O'Shea M, Wright LL. Longitudinal multicenter follow-up of high-risk infants: why, who, when, and what to assess. Seminars in Perinatology. 2003;27:333–342. doi: 10.1016/S0146-0005(03)00045-4.
    1. Coons SJ, Rao S, Keininger DL. A comparative review of generic quality-of-life instruments. PharmacoEconomics. 2000;17:13–35. doi: 10.2165/00019053-200017010-00002.
    1. Zee KI van der, Sanderman R. Het meten van de algemene gezondheidstoestand met de Rand-36: een handleiding [SF-36, Dutch manual] Groningen: centrum voor gezondheidsvraagstukken; 1993.
    1. Ware JE. SF-36 Health Survey Update. Spine. 2000;25:3130–3139. doi: 10.1097/00007632-200012150-00008.
    1. Cullen DJ, Civetta JM, Briggs BA, Ferrara LC. Therapeutic intervention scoring system: a method for quantitative comparison of patient care. Critical Care Medicine. 1974;2:57–60.
    1. Keene AR, Cullen DJ. Therapeutic Intervention Scoring System: update 1983. Critical Care Medicine. 1983;11:1–3. doi: 10.1097/00003246-198301000-00001.
    1. Guttman L. A basis for analyzing test-retest reliability. Psychometrika. 1945;10:255–283. doi: 10.1007/BF02288892.
    1. Jöreskog KG. Statistical analysis of sets of congeneric tests. Psychometrika. 1971;36:109–133. doi: 10.1007/BF02291393.
    1. Raykov T. Behavioral scale reliability and measurement invariance evaluation using latent variable modeling. Behavioral therapy. 2004;35:299–331. doi: 10.1016/S0005-7894(04)80041-8.
    1. Reuterberg SE, Gustafsson JE. Confirmatory factor analysis and reliability: testing measurement model assumptions. Educational and Psychological Measurement. 1992;52:795–811. doi: 10.1177/0013164492052004001.
    1. Cohen J. Statistical power analyses for the behavior sciences. 2. Hillsdale, New Jersey: Lawrence Erlbaum; 1988.
    1. Muthén LK, Muthén BO. Softwareprogram Mplus. 4. CA: Muthén & Muthén: Los Angeles; 2004.

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