Impact of a child with congenital anomalies on parents (ICCAP) questionnaire; a psychometric analysis
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Published on: September 19, 2019
Petra Mazer1, Saskia J Gischler, Hans M Koot
1Intensive Care, Department of Pediatric Surgery, Erasmus MC - Sophia Children's Hospital, Erasmus University Medical Center Rotterdam, the Netherlands. p.mazer@erasmusmc.nl
Insights
The Impact of a Child with Congenital Anomalies on Parents (ICCAP) questionnaire is a reliable tool for assessing parental quality of life after the birth of a child with congenital anomalies. It aids in early detection of stress for timely intervention.
Area of Science:
- Psychology
- Pediatrics
- Public Health
Background:
- Parental quality of life is significantly impacted by the birth of a child with severe congenital anomalies (CA).
- Early stress experienced by parents requires a validated assessment tool.
Purpose of the Study:
- To validate the Impact of a Child with Congenital Anomalies on Parents (ICCAP) questionnaire.
- To assess the impact of severe CA on parental quality of life due to early stress.
Main Methods:
- 100 mothers and fathers of children with severe CA completed the ICCAP and SF-36 questionnaires at 6 weeks and 6 months postpartum.
- The ICCAP questionnaire assesses six domains: caregiver contact, social network, partner relationship, state of mind, child acceptance, and fears/anxiety.
- Reliability (internal consistency, test-retest) and validity (congruent, known-groups) were evaluated, comparing ICCAP to SF-36.
Main Results:
- Confirmatory factor analysis supported 6 subscales for psychological and social domains.
- Reliability estimates ranged from .49 to .92, with test-retest reliability from .42 to .91.
- Positive correlations with SF-36 (.34 to .77) confirmed congruent validity; known-group validity was also indicated.
Conclusions:
- The ICCAP is a reliable and valid instrument for clinical use.
- It facilitates early identification of parental quality of life issues stemming from early stress.
- Enables timely intervention for parents of children with severe congenital anomalies.
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.