Abstract
Living with an inflammatory bowel disease (IBD), while also navigating the demands of adolescence, may present a challenge for the quality of life (QoL) of adolescents. The current study examined the direct and indirect associations of the stressor (illness severity), cognitive appraisal (illness perception), personal (self-efficacy, positive affect, social support) and family coping resources (economic situation, family functioning) with adolescents' QoL. This cross-sectional study was conducted in Israel. Participants were 74 adolescents (44 boys, 30 girls; aged 11–18 years old) living with IBD, who completed a self-report questionnaire during a clinic follow-up visit. Illness severity was not directly associated with QoL, and no mediating effects through illness perception or coping resources were found; however, social support moderated the association between illness severity and QoL. Additionally, illness perception had the highest direct contribution to QoL: adolescents who perceived their illness as a threat showed poorer QoL. This association was also moderated by social support. Social workers in multidisciplinary healthcare teams may contribute to the improvement of QoL among adolescents with IBD by conducting regular QoL screenings, encouraging adolescents to re-frame their perceptions of their illness, and fostering the receipt of social support using individual or child-parent education sessions and CBT interventions.
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References
Bandura, A. (1986). The explanatory and predictive scope of self-efficacy theory. Journal of Social and Clinical Psychology, 4(3), 359–373. https://doi.org/10.1521/jscp.1986.4.3.359
Benchimol, E. I., Walters, T. D., Kaufman, M., Frost, K., Fiedler, K., Chinea, Z., & Zachos, M. (2011). Assessment of knowledge in adolescents with inflammatory bowel disease using a novel transition tool. Inflammatory Bowel Diseases, 17(5), 1131–1137. https://doi.org/10.1002/ibd.21464
Bradburn, N. M. (1969). The structure of psychological well-being. Aldine.
Broadbent, E., Petrie, K. J., Main, J., & Weinman, J. (2006). The brief illness perception questionnaire. Journal of Psychosomatic Research, 60(6), 631–637. https://doi.org/10.1016/j.jpsychores.2005.10.020
Buehler, C. (2020). Family processes and children’s and adolescents’ well-being. Journal of Marriage and Family, 82(1), 145–174. https://doi.org/10.1111/jomf.12637
Carroll, M. W., Kuenzig, M. E., Mack, D. R., Otley, A. R., Griffiths, A. M., Kaplan, G. G., Bernstein, C. N., Bitton, A., Murthy, S. K., Nguyen, G. C., Lee, K., Cooke-Lauder, J., & Benchimol, E. I. (2019). The impact of inflammatory bowel disease in Canada 2018: Children and adolescents with IBD. Journal of the Canadian Association of Gastroenterology, 2(1), S49–S67. https://doi.org/10.1093/jcag/gwy056
Dorrian, A., Dempster, M., & Adair, P. (2009). Adjustment to inflammatory bowel disease: The relative influence of illness perceptions and coping. Inflammatory Bowel Diseases, 15(1), 47–55. https://doi.org/10.1002/ibd.20583
Engstrom, I. (1999). Inflammatory bowel disease in children and adolescents: Mental health and family functioning. Journal of Pediatric Gastroenterology and Nutrition. https://doi.org/10.1097/00005176-199904001-00004
Folkman, S. (2008). The case for positive emotions in the stress process. Anxiety, Stress and Coping, 21(1), 3–14. https://doi.org/10.1080/10615800701740457
Fredrickson, B. L. (2001). The role of positive emotions in positive psychology: The broaden-and-build theory of positive emotions. American Psychologist, 56(3), 218–226. https://doi.org/10.1037//0003-066x.56.3.218
Gray, W. N., Denson, L. A., Baldassano, R. N., & Hommel, K. A. (2011). Disease activity, behavioral dysfunction, and health-related quality of life in adolescents with inflammatory bowel disease. Inflammatory Bowel Diseases, 17(7), 1581–1586. https://doi.org/10.1002/ibd.21520
Gray, W. N., Graef, D. M., Schuman, S. S., Janicke, D. M., & Hommel, K. A. (2013). Parenting stress in pediatric IBD: Relations with child psychopathology, family functioning, and disease severity. Journal of Developmental and Behavioral Pediatrics, 34(4), 237–244. https://doi.org/10.1097/DBP.0b013e318290568a
Herzer, M., Godiwala, N., Hommel, K. A., Driscoll, K., Mitchell, M., Crosby, L. E., Piazza-Waggoner, C., Zeller, M. H., & Modi, A. C. (2010). Family functioning in the context of pediatric chronic conditions. Journal of Developmental and Behavioral Pediatrics, 31(1), 26–34. https://doi.org/10.1097/DBP.0b013e3181c7226b
Hayes, A. F. (2013). Introduction to mediation, moderation, and conditional process analysis. The Guilford Press.
Hobfoll, S. E. (2002). Social and psychological resources and adaptation. Review of General Psychology, 6(4), 307–324. https://doi.org/10.1037/1089-2680.6.4.307
Jerusalem, M., & Schwarzer, R. (1992). Self-efficacy as a resource factor in stress appraisal processes. In R. Schwarzer (Ed.), Self-efficacy: Thought control of action (pp. 195–213). Hemisphere.
Jones, B., Walsh, C., & Phillips, F. (2019). Social work with children and adolescents with medical conditions. In S. Gehlert & T. Browne (Eds.), Handbook of health social work (3rd ed., pp. 361–380). Wiley.
Karwowski, C. A., Keljo, D., & Szigethy, E. (2009). Strategies to improve quality of life in adolescents with inflammatory bowel disease. Inflammatory Bowel Diseases, 15(11), 1755–1764. https://doi.org/10.1002/ibd.20919
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. Springer.
Leventhal, H., Meyer, D., & Nerenz, D. (1980). The common sense representation of illness danger. In S. Rachman (Ed.), Medical psychology (Vol. II, pp. 7–30). Pergamon Press.
Levy, R. L., van Tilburg, M. A., Langer, S. L., Romano, J. M., Walker, L. S., Mancl, L. A., Murphy, T. B., Claar, R. L., Feld, S. I., Christie, D. L., Abdullah, B., DuPen, M. M., Swanson, K. S., Baker, M. D., Stoner, S. A., & Whitehead, W. E. (2016). Effects of a cognitive behavioral therapy intervention trial to improve disease outcomes in children with inflammatory bowel disease. Inflammatory Bowel Diseases, 22(9), 2134–2148. https://doi.org/10.1097/MIB.0000000000000881
Libby, C. J., & Glenwick, D. S. (2010). Protective and exacerbating factors in children and adolescents with fibromyalgia. Rehabilitation Psychology, 55(2), 151–158. https://doi.org/10.1037/a0019518
Mackner, L. M., & Crandall, W. V. (2006). Brief Report: Psychosocial adjustment in adolescents with inflammatory bowel disease. Journal of Pediatric Psychology, 31(3), 281–285. https://doi.org/10.1093/jpepsy/jsj023
Mackner, L. M., Sisson, D. P., & Crandall, W. V. (2004). Review: Psychosocial issues in pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 29(4), 243–257. https://doi.org/10.1093/jpepsy/jsh027
Mackner, L. M., Vannatta, K., & Crandall, W. V. (2012). Gender differences in the social functioning of adolescents with inflammatory bowel disease. Journal of Clinical Psychology in Medical Settings, 19(3), 270–276. https://doi.org/10.1007/s10880-011-9292-x
Nicholas, D. B., & Keilty, K. (2007). An evaluation of dyadic peer support for caregiving parents of children with chronic lung disease requiring technology assistance. Social Work in Health Care, 44(3), 245–259. https://doi.org/10.1300/J010v44n03_08
Pedersen, S., & Revenson, T. A. (2005). Parental illness, family functioning, and adolescent well-being: A family ecology framework to guide research. Journal of Family Psychology, 19(3), 404–419. https://doi.org/10.1037/0893-3200.19.3.404
Plevinsky, J. M., & Greenley, R. N. (2014). Exploring health-related quality of life and social functioning in adolescents with inflammatory bowel diseases after attending camp oasis and participating in a facebook group. Inflammatory Bowel Diseases, 20(9), 1611–1617. https://doi.org/10.1097/MIB.0000000000000120
Podolsky, D. K. (2002). Inflammatory bowel disease. The New England Journal of Medicine, 347(6), 417–429. https://doi.org/10.1056/NEJMra020831
Sewitch, M. J., Abrahamowicz, M., Bitton, A., Daly, D., Wild, G. E., Cohen, A., Katz, S., Szego, P. L., & Dobkin, P. L. (2001). Psychological distress, social support, and disease activity in patients with inflammatory bowel disease. The American Journal of Gastroenterology, 96(5), 1470–1479. https://doi.org/10.1111/j.1572-0241.2001.03800.x
Silva, L. C., Melo Seixas, R. B. P., & de Carvalho, E. (2020). Quality of life in children and adolescents with inflammatory bowel disease: Impact and predictive factors. Pediatric Gastroenterology, Hepatology and Nutrition, 23(3), 286–296. https://doi.org/10.5223/pghn.2020.23.3.286
Stanton, A. L., Revenson, T. A., & Tennen, H. (2007). Health psychology: Psychological adjustment to chronic disease. Annual Review of Psychology, 58(1), 565–592. https://doi.org/10.1146/annurev.psych.58.110405.085615
Szigethy, E., Hardy, D., Craig, A. E., Low, C., & Kukic, S. (2009). Girls connect: Effects of a support group for teenage girls with inflammatory bowel disease and their mothers. Inflammatory Bowel Diseases, 15(8), 1127–1128. https://doi.org/10.1002/ibd.20775
Szigethy, E., Youk, A. O., Gonzalez-Heydrich, J., Bujoreanu, S. I., Weisz, J., Fairclough, D., Ducharme, P., Jones, N., Lotrich, F., Keljo, D., Srinath, A., Bousvaros, A., Kupfer, D., & DeMaso, D. R. (2015). Effect of 2 psychotherapies on depression and disease activity in pediatric Crohn’s disease. Inflammatory Bowel Diseases, 21(6), 1321–1328. https://doi.org/10.1097/MIB.0000000000000358
Upton, P., Eiser, C., Cheung, I., Hutchings, H. A., Jenney, M., Maddocks, A., Russell, I. T., & Williams, J. G. (2005). Measurement properties of the UK-English version of the pediatric quality of life inventorytm 4.0 (PedsQLTM) generic core scales. Health and Quality of Life Outcomes. https://doi.org/10.1186/1477-7525-3-22
van den Brink, G., Stapersma, L., Vlug, L., Rizopolous, D., Bodelier, A., van Wering, H., Hurkmans, P., Stuyt, R., Hendriks, D., & van der Burg, J. (2018). Prevalence and risk factors for anxiety and depressive symptoms in children, adolescents and young adults with inflammatory bowel disease. Journal of Crohn’s and Colitis, 12(1), 202–203. https://doi.org/10.1093/ecco-jcc/jjx180.332
Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.
Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E., & Dixon, P. (2004). The PedsQL family impact module: Preliminary reliability and validity. Health and Quality of Life Outcomes, 2, 55. https://doi.org/10.1186/1477-7525-2-55
Wallander, J. L., & Koot, H. M. (2016). Quality of life in children: A critical examination of concepts, approaches, issues, and future directions. Clinical Psychology Review, 45, 131–143. https://doi.org/10.1016/j.cpr.2015.11.007
Yerushalmy-Feler, A., Ron, Y., Barnea, E., Nachum, A., Matalon, S., Dali-Levy, M., Dotan, I., & Cohen, S. (2017). Adolescent transition clinic in inflammatory bowel disease: Quantitative assessment of self-efficacy skills. European Journal of Gastroenterology and Hepatology, 29(7), 831–837. https://doi.org/10.1097/MEG.0000000000000864
Zijlstra, M., De Bie, C., Breij, L., van Pieterson, M., van Staa, A. L., de Ridder, L., van der Woude, J., & Escher, J. (2013). Self-efficacy in adolescents with inflammatory bowel disease: A pilot study of the IBD-yourself, a disease-specific questionnaire. Journal of Crohn’s and Colitis. https://doi.org/10.1016/j.crohns.2013.02.017
Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1988). The multidimensional scale of perceived social support. Journal of Personality Assessment, 52(1), 30–41. https://doi.org/10.1207/s15327752jpa5201_2
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The authors thank the staff of the Pediatric Gastroenterology & Nutrition Unit at Rambam Medical Center and all the participants for their cooperation
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Pachter-Alt, A., Soskolne, V. It’s All in the Head: Illness Perception is the Major Correlate of Quality of Life Among Adolescents with Inflammatory Bowel Disease. Child Adolesc Soc Work J 41, 151–159 (2024). https://doi.org/10.1007/s10560-022-00823-x
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DOI: https://doi.org/10.1007/s10560-022-00823-x