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Identity formation in adolescents with congenital cardiac disease: a forgotten issue in the transition to adulthood

Published online by Cambridge University Press:  16 March 2011

Koen Luyckx ,
Eva Goossens ,
Carolien Van Damme  and
Philip Moons
Koen Luyckx*
Affiliation:
Faculty of Psychology and Educational Sciences, School Psychology and Child and Adolescent Development, Centre for Health Services and Nursing Research, University Hospitals of Leuven, Catholic University of Leuven, Leuven, Belgium
Eva Goossens
Affiliation:
Department of Public Health, Centre for Health Services and Nursing Research, University Hospitals of Leuven, Catholic University of Leuven, Leuven, Belgium
Carolien Van Damme
Affiliation:
Faculty of Psychology and Educational Sciences, Centre for Social and Cultural Psychology, University Hospitals of Leuven, Catholic University of Leuven, Leuven, Belgium
Philip Moons
Affiliation:
Division of Congenital and Structural Cardiology, Department of Public Health, Centre for Health Services and Nursing Research, University Hospitals of Leuven, Catholic University of Leuven, Leuven, Belgium
*
Correspondence to: K. Luyckx, Department of Psychology, Catholic University Leuven, Tiensestraat 102, 3000 Leuven, Belgium. Tel: 32 (0)16 325978; Fax: 32 (0)16 326144; E-mail: Koen.Luyckx@psy.kuleuven.be
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Abstract

Identity formation is a core developmental task in adolescence and functions as a key resource for transitioning to adulthood. This study investigated how adolescents with congenital cardiac disease form their identity and how it relates to demographic and medical parameters, quality of life, perceived health, depressive symptoms, and loneliness. A total of 429 adolescents aged 14–18 years with congenital cardiac disease and 403 matched controls completed questionnaires on identity and all outcome variables. There were five meaningful identity statuses, similar to those obtained in the control sample, which were found in the patient sample. Of them, two statuses – achievement and foreclosure – were characterised by a strong sense of identity; one status – diffused diffusion – especially was characterised by a weak sense of identity combined with high scores on worry about the future. These identity statuses were differentially related to outcome variables, with individuals in diffused diffusion especially scoring highest on depressive symptoms, problems in school, treatment anxiety, and communication problems with clinicians, and lowest on quality of life. Having a strong sense of personal identity was found to protect against such maladaptive outcomes. In sum, most adolescents with congenital cardiac disease moved through their identity formation process in a similar manner to other adolescents. Adolescents with a diffused identity were particularly at risk of experiencing maladjustment and problems in treatment adherence. Hence, developing intervention strategies to provide continuity of care on the road to adulthood involves paying attention to core developmental tasks, such as identity formation in adolescents with congenital cardiac disease.

Keywords

Cardiac defectscongenitalidentityadolescencequality of lifedepressive symptomsloneliness
Type
Original Articles
Information
Cardiology in the Young , Volume 21 , Issue 4 , 12 July 2011 , pp. 411 - 420
Copyright
Copyright © Cambridge University Press 2011

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Footnotes

*

KL is a postdoctoral researcher at the Fund for Scientific Research, Flanders.

References

1.Kroger, J, Marcia, JE. Identity statuses: origins, meanings, and interpretations. In: Schwartz SJ, Luyckx K, Vignoles VL (eds). Handbook of Identity Theory and Research. Springer, New York, in press.Google Scholar
2.Luyckx, K, Schwartz, SJ, Goossens, L, Beyers, W, Missotten, L. A process-oriented model of identity formation and evaluation. In: Schwartz SJ, Luyckx K, Vignoles VL (eds). Handbook of Identity Theory and Research. Springer, New York, in press.Google Scholar
3.Luyckx, K, Seiffge-Krenke, I, Schwartz, SJ, et al. Identity development, coping, and adjustment in emerging adults with a chronic illness: the sample case of type 1 diabetes. J Adolesc Health 2008; 43: 451–458.CrossRefGoogle ScholarPubMed
4.Hoffman, JI, Kaplan, S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 1890–1900.CrossRefGoogle ScholarPubMed
5.Moons, P, De Geest, S, Budts, W. Comprehensive care for adults with congenital heart disease: expanding roles for nurses. Eur J Cardiovasc Nurs 2002; 1: 23–28.CrossRefGoogle ScholarPubMed
6.Moons, P, Van Deyk, K, Marquet, K, et al. Individual quality of life in adults with congenital heart disease: a paradigm shift. Eur Heart J 2005; 26: 298–307.CrossRefGoogle ScholarPubMed
7.Karsdorp, PA, Everaerd, W, Kindt, M, Mulder, BJM. Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis. J Pediatr Psychol 2007; 32: 527–541.CrossRefGoogle ScholarPubMed
8.Moons, P, Van Deyk, K, De Bleser, L, et al. Quality of life and health status in adults with congenital heart disease: a direct comparison with healthy counterparts. Eur J Cardiovasc Prev Rehabil 2006; 13: 407–413.CrossRefGoogle ScholarPubMed
9.Luyckx, K, Schwartz, SJ, Berzonsky, MD, et al. Capturing ruminative exploration: extending the four-dimensional model of identity formation in late adolescence. J Res Pers 2008; 42: 58–82.CrossRefGoogle Scholar
10.Mitchell, SC, Korones, SB, Berendes, HW. Congenital heart disease in 56,109 births. Incidence and natural history. Circulation 1971; 43: 323–332.CrossRefGoogle Scholar
11.Dillman, DA. Mail and other self-administered questionnaires. In: Rossi PH, Wright JD, Anderson AB (eds). Handbook of Survey Research. Academic Press, New York, 1983, 359–377.CrossRefGoogle Scholar
12.Vander Velde, ET, Vriend, JW, Mannens, MM, Uiterwaal, CS, Brand, R, Mulder, BJ. CONCOR, an initiative towards a national registry and DNA-bank of patients with congenital heart disease in the Netherlands: rationale, design, and first results. Eur J Epidemiol 2005; 20: 549–557.CrossRefGoogle Scholar
13.Moons, P, Sluysmans, T, De Wolf, D, et al. Congenital heart disease in 111 225 births in Belgium: birth prevalence, treatment and survival in the 21st century. Acta Paediatr 2009; 98: 472–477.CrossRefGoogle Scholar
14.Warnes, CA, Liberthson, R, Danielson, GK, et al. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001; 37: 1170–1175.CrossRefGoogle ScholarPubMed
15.Peplau, LA, Perlman, D. Perspectives on loneliness. In: Peplau LA, Perlman D (eds). Loneliness: A Sourcebook of Current Theory, Research, and Therapy. Wiley, New York, 1982, 1–20.Google Scholar
16.Bouma, J, Ranchor, AV, Sanderman, R, et al. Het Meten van Symptomen van Depressie Met de CESD: een Handleiding. [The Measurement of Symptoms of Depression with the CESD: A Manual]. Noordelijk Centrum voor Gezondheidsvraagstukken, Groningen, The Netherlands, 1995.Google Scholar
17.Roberts, RE, Lewinsohn, PM, Seeley, JR. A brief measure of loneliness suitable for use with adolescents. Psychol Rep 1993; 72: 1379–1391.CrossRefGoogle ScholarPubMed
18.Moons, P, Budts, W, De Geest, S. Critique to the conceptualization of quality of life: a review and evaluation of different conceptual approaches. Int J Nurs Stud 2006; 43: 891–901.CrossRefGoogle Scholar
19.Moons, P. Why call it health-related quality of life when you mean perceived health status? Eur J Cardiovasc Nurs 2004; 3: 275–277.CrossRefGoogle ScholarPubMed
20.Uzark, K, Jones, K, Burwinkle, TM, Varni, JW. The Pediatric Quality of Life Inventory™ in children with heart disease. Prog Pediatr Cardiol 2003; 18: 141–148.CrossRefGoogle Scholar
21.Varni, JW, Seid, M, Murtin, PS. The PedsQL™ measurement model for the pediatric quality of life inventory. Med Care 1999; 37: 126–139.CrossRefGoogle ScholarPubMed
22.Gore, PA Jr. Cluster analysis. In: Tinsley HEA, Brown SD (eds). Handbook of Applied Multivariate Statistics and Mathematical Modeling. Academic Press, San Diego, California, 2000, 297–321.CrossRefGoogle Scholar
23.Breckenridge, JN. Validating cluster analysis: consistent replication and symmetry. Multivariate Behav Res 2000; 35: 261–285.CrossRefGoogle ScholarPubMed
24.Cohen, J. Statistical Power Analyses for the Behavioral Sciences, 2nd edn. Erlbaum, Hillsdale, New Jersey, 1988.Google Scholar
25.Haberman, SJ. Analysis of residuals in cross-classified tables. Biometrics 1973; 29: 205–220.CrossRefGoogle Scholar
26.Nio, K. Sense of coherence in adolescents with congenital cardiac disease. Cardiol Young 2010; 20: 538–546.CrossRefGoogle ScholarPubMed
27.Moons, P, Norekval, TM. Is sense of coherence a pathway for improving the quality of life of patients who grow up with chronic diseases? A hypothesis. Eur J Cardiovasc Nurs 2006; 5: 16–20.CrossRefGoogle ScholarPubMed
28.Goossens, E, Stephani, I, Hilderson, D, et al. Transfer of adolescents with congenital heart disease from pediatric cardiology to adult health care: an analysis of transfer destinations. J Am Coll Cardiol year, accepted for publication.Google Scholar
29.Yeung, E, Kay, J, Roosevelt, GE, Brandon, M, Yetman, AT. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008; 125: 62–65.CrossRefGoogle Scholar
30.Moons, P, De Volder, E, Budts, W, et al. What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart 2001; 86: 74–80.Google Scholar
31.Reid, GJ, Webb, GD, McCrindle, BW, Irvine, MJ, Siu, SC. Health behaviors among adolescents and young adults with congenital heart disease. Congenit Heart Dis 2008; 3: 16–25.CrossRefGoogle Scholar
32.Mussatto, K. Adaptation of the child and family to life with a chronic illness. Cardiol Young 2006; 16: 110–116.CrossRefGoogle ScholarPubMed
33.Ong, L, Nolan, RP, Irvine, J, Kovacs, AH. Parental overprotection and heart-focused anxiety in adults with congenital heart disease. Int J Behav Med, in press.Google Scholar