Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.
ADVANCED SEARCH
Log in
Top
Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2008

Open Access 01-12-2008 | Research

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

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

Published in: Health and Quality of Life Outcomes | Issue 1/2008

Login to get access

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.
Appendix
Available only for authorised users
Literature
1.
Statistics Netherlands MoHWaS: Vademecum of health statistics of the Netherlands. Voorburg/Heerlen; 2003.
2.
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. 10.1053/spsu.2001.26846CrossRefPubMed
3.
Bouman NH: The psychosocial adjustment of children with major congenital abdominal anomalies. PhD thesis. Sophia Childrens Hospital, Erasmus University, Department of child and adolescent psychiatry; 1999.
4.
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.PubMed
5.
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. 10.1136/adc.2002.016543PubMedCentralCrossRefPubMed
6.
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. 10.1002/pd.1970130711CrossRefPubMed
7.
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. 10.1016/0277-9536(94)E0118-CCrossRefPubMed
8.
Korenromp MJ: Parental adaptation to termination of pregnancy for fetal anomalies. PhD thesis. Utrecht University, Department of perinatology and Gynaecology, University Medical Centre Utrecht; 2006.
9.
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. 10.3109/01674820309042809CrossRefPubMed
10.
Nicholas AM, Lewin TJ: Grief reactions of parental couples: congenital handicap and cot death. Medical Journal of Australia 1986, 144: 292–295.PubMed
11.
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. 10.1093/jpepsy/24.6.515CrossRefPubMed
12.
Bradbury ET, Hewison J: Early parental adjustment to visible congenital disfigurement. Child: Care, Health and Development 1994, 20: 251–266. 10.1111/j.1365-2214.1994.tb00388.x
13.
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.PubMed
14.
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. 10.1093/jpepsy/23.4.219CrossRefPubMed
15.
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. 10.1016/S0022-3468(05)80257-XCrossRefPubMed
16.
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. 10.1002/ajmg.1527CrossRefPubMed
17.
Goldberg D: Manual of the General Health Questionnaire. Windsor, NFER; 1978.
18.
Koeter MWJ, Ormel J: General Health Questionnaire. Nederlandse bewerking. Handleiding. Lisse: Swets & Zeitlinger; 1991.
19.
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(Pt 3):295–298.CrossRefPubMed
20.
Toedter LJ, Lasker JN, Alhadeff JM: The Perinatal Grief Scale: development and initial validation. American Journal of Orthopsychiatry 1988, 58: 435–449.CrossRefPubMed
21.
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. 10.1111/j.1365-3016.1992.tb00787.xCrossRefPubMed
22.
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. 10.3109/00048679309072125CrossRefPubMed
23.
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. 10.1016/S0146-0005(03)00045-4CrossRefPubMed
24.
Coons SJ, Rao S, Keininger DL: A comparative review of generic quality-of-life instruments. PharmacoEconomics 2000, 17: 13–35. 10.2165/00019053-200017010-00002CrossRefPubMed
25.
Zee KI, Sanderman R: Het meten van de algemene gezondheidstoestand met de Rand-36: een handleiding [SF-36, Dutch manual]. Groningen: centrum voor gezondheidsvraagstukken; 1993.
26.
27.
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.CrossRefPubMed
28.
Keene AR, Cullen DJ: Therapeutic Intervention Scoring System: update 1983. Critical Care Medicine 1983, 11: 1–3. 10.1097/00003246-198301000-00001CrossRefPubMed
29.
Guttman L: A basis for analyzing test-retest reliability. Psychometrika 1945, 10: 255–283. 10.1007/BF02288892CrossRefPubMed
30.
Jöreskog KG: Statistical analysis of sets of congeneric tests. Psychometrika 1971, 36: 109–133. 10.1007/BF02291393CrossRef
31.
Raykov T: Behavioral scale reliability and measurement invariance evaluation using latent variable modeling. Behavioral therapy 2004, 35: 299–331. 10.1016/S0005-7894(04)80041-8CrossRef
32.
Reuterberg SE, Gustafsson JE: Confirmatory factor analysis and reliability: testing measurement model assumptions. Educational and Psychological Measurement 1992, 52: 795–811. 10.1177/0013164492052004001CrossRef
33.
Cohen J: Statistical power analyses for the behavior sciences. 2nd edition. Hillsdale, New Jersey: Lawrence Erlbaum; 1988.
34.
Muthén LK, Muthén BO: Softwareprogram Mplus. 4th edition. CA: Muthén & Muthén: Los Angeles; 2004.
Metadata
Title
Impact of a child with congenital anomalies on parents (ICCAP) questionnaire; a psychometric analysis
Authors
Petra Mazer
Saskia J Gischler
Hans M Koot
Dick Tibboel
Monique van Dijk
Hugo J Duivenvoorden
Publication date
01-12-2008
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2008
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-6-102

Other articles of this Issue 1/2008

Health and Quality of Life Outcomes 1/2008 Go to the issue

Research

A Korean version of the Oral Impacts on Daily Performances (OIDP) scale in elderly populations: Validity, reliability and prevalence

Research

Simple imputation methods were inadequate for missing not at random (MNAR) quality of life data

Research

Measuring the impact of health problems among adults with limited mobility in Thailand: further validation of the Perceived Impact of Problem Profile

Research

Onset and persistence of person-perceived participation restriction in older adults: a 3-year follow-up study in the general population

Research

Quality of life among adolescents with sickle cell disease: Mediation of pain by internalizing symptoms and parenting stress

Research

Fatigue characteristics in multiple sclerosis: the North American Research Committee on Multiple Sclerosis (NARCOMS) survey