ORIGINAL PAPER
Internalizing and externalizing behaviors in chronically ill adolescents in the context of family system functioning
 
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1
Department of Pediatric Cardiology and Congenital Heart Diseases, Medical University of Gdansk, Gdansk, Poland
 
2
Institute of Psychology, University of Gdansk, Gdansk, Poland
 
3
SWPS University of Social Sciences and Humanities, Sopot Campus, Poland
 
4
Prof. Tadeusz Bilikiewicz Psychiatric Hospital in Gdansk, Poland
 
5
Jadwiga Titz-Kosko Provincial Rheumatology Clinic in Sopot, Poland
 
 
Submission date: 2019-03-19
 
 
Final revision date: 2019-07-16
 
 
Acceptance date: 2019-08-05
 
 
Online publication date: 2019-09-11
 
 
Publication date: 2019-09-11
 
 
Health Psychology Report 2019;7(3):213-228
 
KEYWORDS
TOPICS
ABSTRACT
Background:
Diagnosis of chronic illness, which constitutes a life-threatening situation such as in Marfan syndrome or dis-ease with periods of remission and severity such as in juvenile idiopathic arthritis (JIA), leads to problems with the functioning of the adolescent and the whole family system. Therefore the aim of the study was to determine the differences in severity of internalizing and externalizing problems and in the perception of the family sys-tem between adolescents with Marfan syndrome, with JIA, and without chronic disease, as well as to determine whether characteristics of the family system are associated with externalizing and internalizing behaviors in those groups.

Participants and procedure:
The study involved three groups of adolescents: 1) with Marfan syndrome (n = 25), 2) with JIA (n = 29), and 3) without chronic illness (n = 20). We used the adolescent version of the Child Behavior Checklist (CBCL) Youth Self-Report (YSR) and the Family Assessment Scale.

Results:
Our results indicated that adolescents with Marfan syndrome have similar scores compared to adolescents without illness on all subscales concerning both internalizing and externalizing behaviors, as well as the family system’s characteristics. Compared to adolescents with JIA, adolescents with Marfan syndrome had lower scores on externalization symptoms and Attention Problems and they also perceive their families as less bal-anced. Additionally, in the perception of adolescents with Marfan syndrome and with JIA the weaker the family bond, the stronger the intensity of externalizing behaviors.

Conclusions:
Although in the light of our novel research, adolescents with Marfan syndrome do not present behavioral prob-lems different from healthy peers, it is worth continuing such research in order to verify the results. Adolescents with JIA present more externalizing behaviors than peers without chronic illness, which is consistent with some previous research. Research on families of an adolescent child with Marfan and JIA are quite novel and they should be continued.

REFERENCES (64)
1.
Adams, J. N., & Trent, R. J. (1998). Aortic complications of Marfan’s syndrome. The Lancet, 352, 1722–1723. https://doi.org/10.1016/S0140-....
 
2.
Barlow, J. H., Shaw, K. L., & Harrison, K. (1999). Consulting the ‘experts’: children’s and parents’ per-ceptions of psycho-educational interventions in the context of juvenile chronic arthritis. Health Edu-cation Research, 14, 597–610. https://doi.org/10.1093/her/14....
 
3.
Beales, J. G., Holt, P. J., Keen, J. H., & Mellor, V. P. (1983). Children with juvenile chronic arthritis: their beliefs about their illness and therapy. Annals of the Rheumatic Diseases, 42, 481–486. https://doi.org/10.1136/ard.42....
 
4.
Bolanowski, J., & Wrzosek, Z. (2007). Choroby reumatyczne: podręcznik dla studentów fizjoterapii [Rheumatic diseases: a textbook for physiotherapy students]. Wrocław: Wydawnictwo Akademii Wychowania Fizycznego we Wrocławiu.
 
5.
Carter, B., & McGoldrick, M. (Eds.) (1989). The changing family life cycle: A framework for family ther-apy. Needham Heights, MA: Allyn and Bacon.
 
6.
Cavallo, S., Feldman, D. E., Swaine, B., Meshefedjian, G., Malleson, P. N., & Duffy, C. M. (2009). Is parental coping associated with quality of life in juvenile idiopathic arthritis? Pediatric Rheumatolo-gy, 7, 7. https://doi.org/10.1186/1546-0....
 
7.
Dean, J. C. (2007). Marfan syndrome: clinical diagnosis and management. European Journal of Human Genetics, 15, 724–733. https://doi.org/10.1038/sj.ejh....
 
8.
Dietz, H. C., Cutting, C. R., Pyeritz, R. E., Maslen, C. L., Sakai, L. Y., Corson, G. M., Puffenberger, E. G., Hamosh, A., Nanthakumar, E., Curristin, S. M., Stetten, G., Meyers, D. A., & Francomano, C. A. (1991). Marfan syndrome caused by a recurrent de novo missense mutation in the fibrillin gene. Na-ture, 352, 337–339. https://doi.org/10.1038/352337....
 
9.
Dymowska, A., & Nowicka-Sauer, K. (2015). Depresja wśród młodzieży – problem wciąż aktualny [Depression among adolescents – the problem is still valid]. Forum Medycyny Rodzinnej, 9, 124–126.
 
10.
Erkula, G., Jones, K. B., Sponseller, P. D., Dietz, H. C., & Pyeritz, R. E. (2002). Growth and matura-tion in Marfan syndrome. American Journal of Medical Genetics, 109, 100–115. https://doi.org/10.1002/ajmg.1....
 
11.
Feinstein, A. B., Forman, E. M., Masuda, A., Cohen, L. L., Herbert, J. D., Moorthy, L. N., & Goldsmith, D. P. (2011). Pain intensity, psychological inflexibility, and acceptance of pain as predictors of functioning in adolescents with juvenile idiopathic arthritis: a preliminary investigation. Journal of Clinical Psychology in Medical Settings, 18, 291–298. https://doi.org/10.1007/s10880....
 
12.
Fusar-Poli, P., Klersy, C., Stramesi, F., Callegari, A., Arbustini, E., & Politi, P. (2008). Determinants of quality of life in Marfan syndrome. Psychosomatics, 49, 243–248. https://doi.org/10.1176/appi.p....
 
13.
Giuffre, R. M., Gupta, S., Crawford, S. G., & Leung, A. K. (2008). Fears and anxiety in children with long-QT syndrome compared to children with asthma. Journal of the National Medical Association, 100, 420–424. https://doi.org/10.1016/s0027-....
 
14.
Glard, Y., Launay, F., Edgard-Rosa, G., Collignon, P., Jouve, J. L., & Bollini, G. (2008). Scoliotic curve patterns in patients with Marfan syndrome. Journal of Children’s Orthopaedics, 2, 211–216. https://doi.org/10.1007/s11832....
 
15.
Handisides, J. C., Hollenbeck-Pringle, D., Uzark, K., Trachtenberg, F. L., Pemberton, V. L., Atz, T. W., Bradley, T. J., Cappella, E., De Nobele, S., Groh, G. K., Hamstra, M. S., Korsin, R., Levine, J. C., Lindauer, B., Liou, A., Neal, M. K. M., Markham, L. W., Morrison, T., Mussatto, K. A., Olson, A. K., Pierpont, M. E. M., Pyeritz, R. E., Radojewski, E. A., Roman, M. J., Xu, M., & Lacro, R. V. (2019). Health-related quality of life in children and young adults with Marfan syndrome. The Journal of Pe-diatrics, 204, 250–255. https://doi.org/10.1016/j.jped....
 
16.
Haverman, L., van Oers, H. A., Maurice-Stam, H., Kuijpers, T. W., Grootenhuis, M. A., & van Ros-sum, M. A. (2014). Health related quality of life and parental perceptions of child vulnerability among parents of a child with juvenile idiopathic arthritis: results from a web-based survey. Pediat-ric Rheumatology, 12, 34. https://doi.org/10.1186/1546-0....
 
17.
Helgeson, V. S., Janicki, D., Lerner, J., & Barbarin, O. (2003). Brief report: Adjustment to juvenile rheumatoid arthritis: A family systems perspective. Journal of Pediatric Psychology, 28, 347–353. https://doi.org/10.1093/jpepsy....
 
18.
Heszen, I. (2005). Zmienność wymiarów zdrowia na przestrzeni życia człowieka [Variability of health dimensions throughout human life]. In D. Kubacka-Jasiecka & T. M. Ostrowski (Eds.), Psycholo-giczny wymiar zdrowia, kryzysu i choroby [Psychological dimension of health, crisis and disease] (pp. 21–36). Kraków: Wydawnictwo Uniwersytetu Jagiellońskiego.
 
19.
Heszen, I., & Sęk, H. (2007). Psychologia zdrowia [Health psychology]. Warszawa: Wydawnictwo Nau-kowe PWN.
 
20.
Hodges, K., McKnew, D. O. N., Burbach, D. J., & Roebuck, L. (1987). Diagnostic concordance be-tween the Child Assessment Schedule (CAS) and the Schedule for Affective Disorders and Schiz-ophrenia for School-Age Children (K-SADS) in an outpatient sample using lay interviewers. Journal of the American Academy of Child and Adolescent Psychiatry, 26, 654–661. https://doi.org/10.1097/000045....
 
21.
Huygen, A. C. J., Kuis, W., & Sinnema, G. (2000). Psychological, behavioural, and social adjustment in children and adolescents with juvenile chronic arthritis. Annals of the Rheumatic Diseases, 59, 276–282. https://doi.org/10.1136/ard.59....
 
22.
Iniewicz, G. (2008). The specific features of adolescent depression – from developmental reaction to clinical syndrome. Polish Psychological Bulletin, 39, 154–157. https://doi.org/10.2478/v10059....
 
23.
Jakima, S., & Małachowska, E. (2000). Problemy psychologiczne w zespole Marfana [Psychological problems in Marfan syndrome]. In B. Rudzińska (Ed.), Zespół Marfana. Charakterystyka schorzenia i studia przypadków osób nim dotkniętych [Marfan syndrome. Characteristics of the disease and case studies of people affected] (pp. 158–171). Warszawa: Wydawnictwa Tyflologiczne PZN.
 
24.
Johansen, H., Dammann, B., Andresen, I. L., & Fagerland, M. W. (2013). Health-related quality of life for children with rare diagnoses, their parents’ satisfaction with life and the association between the two. Health and Quality of Life Outcomes, 11, 152. https://doi.org/10.1186/1477-7....
 
25.
Jondeau, G., Detaint, D., Tubach, F., Arnoult, F., Milleron, O., Raoux, F., Delorme, G., Mimoun, L., Krapf, L., Hamroun, D., Beroud, C., Roy, C., Vahanian, A., & Boileau, C. (2012). Aortic event rate in the Marfan population: a cohort study. Circulation, 125, 226–232. https://doi.org/10.1161/CIRCUL....
 
26.
Keane, M. G., & Pyeritz, R. E. (2008). Medical management of Marfan syndrome. Circulation, 117, 2802–2813. https://doi.org/10.1161/CIRCUL....
 
27.
693523.
 
28.
LeBovidge, J. S., Lavigne, J. V., Donenberg, G. R., & Miller, M. L. (2003). Psychological adjustment of children and adolescents with chronic arthritis: a meta-analytic review. Journal of Pediatric Psy-chology, 28, 29–39. https://doi.org/10.1093/jpepsy....
 
29.
Marcelli, D. (2013). Psychopatologia wieku dziecięcego [Psychopathology of childhood]. Wrocław: Edra Urban & Partner.
 
30.
Margasiński, A. (2015). The Polish Adaptation of FACES IV-SOR. Polish Journal of Applied Psycholo-gy, 13, 43–66. https://doi.org/10.1515/pjap-2....
 
31.
Margetić, B., Aukst-Margetić, B., Bilić, E., Jelušić, M., & Bukovac, L. T. (2005). Depression, anxiety and pain in children with juvenile idiopathic arthritis (JIA). European Psychiatry, 20, 274–276. https://doi.org/10.1016/j.eurp....
 
32.
Maryniak, A., Bielawska, A., Gorbacz-Mrowiec, Ł., & Kawalec, W. (2011). Objawy psychopatologiczne i satysfakcja z życia młodzieży z zespołem Marfana [Psychopathological symptoms and satisfac-tion with the life of young people with Marfan syndrome]. Psychologia Jakości Życia, 2, 131–142.
 
33.
Maumenee, I. H. (1981). The eye in the Marfan syndrome. Transactions of the American Ophthalmolog-ical Society, 79, 684–733.
 
34.
Memari, A. H., Chamanara, E., Ziaee, V., Kordi, R., & Raeeskarami, S. R. (2016). Behavioral problems in juvenile idiopathic arthritis: a controlled study to examine the risk of psychopathology in a chronic pediatric disorder. International Journal of Chronic Diseases, article ID 5726236. https://doi.org/10.1155/2016/5....
 
35.
Minuchin, S., Baker, L., Rosman, B. L., Liebman, R., Milman, L., & Todd, T. C. (1975). A conceptual model of psychosomatic illness in children: Family organization and family therapy. Archives of General Psychiatry, 32, 1031–1038. https://doi.org/10.1001/archps....
 
36.
Modrzejewska, R., & Bomba, J. (2010). A comparative study of adolescent depression among high school pupils in a large Polish city. Archives of Psychiatry and Psychotherapy, 12, 19–22.
 
37.
Moon, J. R., Cho, Y. A., Huh, J., Kang, I. S., & Kim, D. K. (2016). Structural equation modeling of the quality of life for patients with Marfan syndrome. Health and Quality of Life Outcomes, 14, 83. https://doi.org/10.1186/s12955....
 
38.
Mueller, G. C., Steiner, K., Wild, J. M., Stark, V., Kozlik-Feldmann, R., & Mir, T. S. (2016). Health-related quality of life is unimpaired in children and adolescents with Marfan syndrome despite its distinctive phenotype. Acta Paediatrica, 105, 311–316. https://doi.org/10.1111/apa.13....
 
39.
Müller-Godeffroy, E., Lehmann, H., Küster, R. M., & Thyen, U. (2005). Quality of life and psychosocial adaptation in children and adolescents with juvenile idiopathic arthritis and reactive arthritis. Ze-itschrift fur Rheumatologie, 64, 177–187. https://doi.org/10.1007/s00393....
 
40.
Namysłowska, I., & Siewierska, A. (2001). Lęk w systemie rodzinnym [Anxiety in the family system]. Psychiatria Polska, 28, 547–557.
 
41.
Nemet, A. Y., Assia, E. I., Apple, D. J., & Barequet, I. S. (2006). Current concepts of ocular manifes-tations in Marfan syndrome. Survey of Ophthalmology, 51, 561–575. https://doi.org/10.1016/j.surv....
 
42.
Noll, R. B., Kozlowski, K., Gerhardt, C., Vannatta, K., Taylor, J., & Passo, M. (2000). Social, emotion-al, and behavioral functioning of children with juvenile rheumatoid arthritis. Arthritis & Rheumatism, 43, 1387–1396. https://doi.org/10.1002/1529-0....
 
43.
Obuchowska, I. (2003). Kochać i rozumieć. Część 3 [Love and understand. Part 3]. Poznań: Media Rodzina.
 
44.
Peters, K. F., Kong, F., Horne, R., Francomano, C. A., & Biesecker, B. B. (2001). Living with Marfan syndrome I. Perceptions of the condition. Clinical Genetics, 60, 273–282. https://doi.org/10.1034/j.1399....
 
45.
Pilecka, W. (2011). Psychologia zdrowia dzieci i młodzieży. Perspektywa kliniczna [Psychology of health of children and adolescents. Clinical perspective]. Kraków: Wydawnictwo Uniwersytetu Jagi-ellońskiego.
 
46.
Rand-Hendriksen, S., Johansen, H., Semb, S. O., Geiran, O., Stanghelle, J. K., & Finset, A. (2010). Health-related quality of life in Marfan syndrome: a cross-sectional study of Short Form 36 in 84 adults with a verified diagnosis. Genetics in Medicine, 12, 517–524. https://doi.org/10.1097/GIM.0b....
 
47.
Rapoff, M. A., McGrath, A. M., & Lindsey, C. B. (2003). Medical and psychosocial aspects of juvenile rheumatoid arthritis. In M. C. Roberts (Ed.), Handbook of Pediatric Psychology: Third Edition (pp. 392–408). New York: Guilford.
 
48.
Ratiu, I., Virden, T. B., Baylow, H., Flint, M., & Esfandiarei, M. (2018). Executive function and quality of life in individuals with Marfan syndrome. Quality of Life Research, 27, 2057–2065. https://doi.org/10.1007/s11136....
 
49.
Reiter-Purtill, J., Gerhardt, C. A., Vannatta, K., Passo, M. H., & Noll, R. B. (2003). A controlled longi-tudinal study of the social functioning of children with juvenile rheumatoid arthritis. Journal of Pedi-atric Psychology, 28, 17–28. https://doi.org/10.1093/jpepsy....
 
50.
Rolland, J. S. (1987). Family illness paradigms: Evolution and significance. Family Systems Medicine, 5, 482–503. https://doi.org/10.1037/h00897....
 
51.
Rolland, J. S. (1999). Parental illness and disability: a family systems framework. Journal of Family Therapy, 21, 242–266. https://doi.org/10.1111/1467-6....
 
52.
Scherer, L. R., Arn, P. H., Dressel, D. A., Pyeritz, R. M., & Haller, J. A. (1988). Surgical management of children and young adults with Marfan syndrome and pectus excavatum. Journal of Pediatric Surgery, 23, 1169–1172. https://doi.org/10.1016/s0022-....
 
53.
Schoormans, D., Radonic, T., De Witte, P., Groenink, M., Azim, D., Lutter, R., Mulder, B. J., Sprangers, M. A., & Zwinderman, A. H. (2012). Mental quality of life is related to a cytokine genetic pathway. PloS One, 7, e45126. https://doi.org/10.1371/journa....
 
54.
Seid, M., Huang, B., Niehaus, S., Brunner, H. I., & Lovell, D. J. (2014). Determinants of health-related quality of life in children newly diagnosed with juvenile idiopathic arthritis. Arthritis Care & Research, 66, 263–269. https://doi.org/10.1002/acr.22....
 
55.
Szabała, B. (2009). Rodzina dziecka z cukrzycą [Family of a child with diabetes]. Lublin: Wydawnictwo Uniwersytetu Marii Curie-Skłodowskiej.
 
56.
Tuszkiewicz-Misztal, E., Smolewska, E., Postępski, J., & Olesińska, E. (2014). Reumatologia wieku rozwojowego [Rheumatology of the developmental age]. In I. Zimmermann-Górska (Ed.), Postępy reumatologii klinicznej [Advances in clinical rheumatology] (pp. 62–89). Warszawa: PZWL.
 
57.
Vandvik, I. H. (1990). Mental health and psychosocial functioning in children with recent onset of rheumatic disease. Journal of Child Psychology and Psychiatry, 31, 961–971. https://doi.org/10.1111/j.1469....
 
58.
Velvin, G., Bathen, T., Rand-Hendriksen, S., & Geirdal, A. Ø. (2016). Satisfaction with life in adults with Marfan syndrome (MFS): associations with health-related consequences of MFS, pain, fatigue, and demographic factors. Quality of Life Research, 25, 1779–1790. https://doi.org/10.1007/s11136....
 
59.
Velvin, G., Wilhelmsen, J. E., Johansen, H., Bathen, T., & Geirdal, A. Ø. (2019). Systematic review of quality of life in persons with hereditary thoracic aortic aneurysm and dissection diagnoses. Clinical Genetics, 95, 661–676. https://doi.org/10.1111/cge.13....
 
60.
Ward, T. M., Sonney, J., Ringold, S., Stockfish, S., Wallace, C. A., & Landis, C. A. (2014). Sleep dis-turbances and behavior problems in children with and without arthritis. Journal of Pediatric Nursing, 29, 321–328. https://doi.org/10.1016/j.pedn....
 
61.
Wolańczyk, T. (2002). Zaburzenia emocjonalne i behawioralne u dzieci i młodzieży szkolnej w Polsce [Emotional and behavioral disorders in children and adolescents in Poland]. Warszawa: Akademia Medyczna.
 
62.
Woźniak-Mielczarek, L. (2017). Ocena układu krążenia u pacjentów z zespołem Marfana [Evaluation of cardiovascular system in patients with Marfan syndrome]. Unpublished doctoral dissertation. Gdansk: Gdansk Medical University.
 
63.
Ziarko, M. (2014). Zmaganie się ze stresem choroby przewlekłej [Coping with chronic illness]. Poznań: Wydawnictwo Naukowe Wydziału Nauk Społecznych UAM.
 
64.
Zubrzycka, R. (2014). Uszkodzony gen. O problemach osób z mukowiscydozą i ich rodzin [Damaged gen. About the problems of people with cystic fibrosis and their families]. Dyskursy Pedagogiki Specjalnej, 15, 140–150.
 
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