Abstract Background Paediatric chronic diseases, especially severe ones, have a significant impact not only on the quality of child’s life, but also on the entire family. The aim of this study was to investigate whether and how the relationships between parents of children with inflammatory bowel disease (IBD) has changed since their child was diagnosed with IBD. Methods From September 2017 till now, a questionnaire containing 23 inquiries has been sent to the parents of children with IBD. The questions concerned the following issues: awareness of their child’s chronic disease, subjective perception of disease severity, access to variuos sources of support, marital disagreements caused by the child’s disease, and the impact of IBD on their free time and marital life. A T-Student test was used for statystical analysis, and incomplete questionnaires were not included. Results Two hundred and sixteen completed questionnaires were included into analysis (5 were excluded due to the incomplete data). Ninety eight (46%) respondents declared that they had to quit their job due to the child’s disease, 64% (n = 134) admitted they gave up their hobbies and plans, and 70% (n = 147) stated that the disease diagnosis had an impact on their free time. Only 20 (9.6%) respondents considered their child’s diasease moderate-mild, which was defined as less than 6 in 0-9 scale. Respondents who found the child’s disease severe (7 and more out of 9), (n = 161) more frequently pondered separation with a partner due to the child’s IBD (n = 26, p 0,05). They also admitted decreased frequency of sexual activity (n = 93, p 0,05) with less pleasure, only due to marriage commitment (n = 23, p 0,05). Significantly morerespondents (79%, n = 166) declared that they were less intimate with each other during IBD flares than after diagnosisitself 21%, n = 45, p 0,05). Chronic disease has also changed their mind about parenthood - 43% of respondents (n = 91) stated they decided not to have another offspring after their child had been diagnosed with IBD. Based on statystical analysis no gender influence on provided answers was reported. Generally, women (67 % of the respondents) found their child’s disease more severe than men: 8.5 vs 7.0 out of 9 in severity score, respectively. Also, more women than men considered separation: 17% vs 3%, respectively. Conclusion Based on the results obtained from our questionnaire, we conclud that the diagnosis of IBD in the child significantly affects relationship between parents and their marital life. Families are often forced to change their way of life or give up their work in order to provide care for their chronically ill child. References: 1. De Boer M, Grootenhuis M, Derkx B, Last B. Health-related quality of life and psychosocial functioning of adolescents with inflammatory bowel disease. Inflamm Bowel Dis. 2005;11:400–406. 2. Brown I, Brown RI, Baum NT, Isaacs BJ, Myerscough T, Neikrug S et al.: Family Quality of Life Survey: General Version. Surrey Place Centre, Toronto, 2006. 3. Kazak AE, Rourke MT, Navsaria N. Families and other systems in pediatric psychology. In: Roberts MC, Steele RG, editors. Handbook of pediatric psychology. 4. New York City: The Guilford Press; 2009. pp. 656–671 4. Cousino MK, Hazen RA.Parenting stress among caregivers of children with chronic illness: a systematic review. J Pediatr Psychol; 2013:809-828. 5. Alderfer MA, Fiese BH, Gold JI, Cutuli JJ, Holmbeck GN, Goldbeck L, et al. Evidence-based assessment in pediatric psychology: family measures. J Pediatr Psychol. 2008;33:1046–1061. 6. Miller IW, Epstein NB, Bishop DS, Keitner GI. The mcmaster family assessment device: reliability and validity. J Marital Fam Ther. 1985;11:345–356. 7. Miller IW, Kabacoff RI, Epstein NB, Bishop DS, Keitner GI, Baldwin LM, van der Spuy HIJ. The development of a clinical rating scale for the McMaster model of family functioning. Fam Process. 1994;33:53–69 8. Agostini A, Rizzello F, Ravegnani G. et al. Parental bonding and inflammatory bowel disease. Pychosomatics; 2010;51(1):14-21. 9. Knez R, Francisković T, Samarin RM, Niksić M. Attachment style in parents of children with chronic gastrointestinal disease. Coll Antropol; 2011:125-30. 10. Greenley RN, Cunningham C. Parent quality of life in the context of pediatric inflammatory bowel disease. J Pediatr Psychol; 2009:129-36. 11 Szajnberg N, Krall V, Davis P, Treem W, Hyams J. Psychopathology and relationship measures in children with inflammatory bowel disease and their parents. Child Psychiatry Hum Dev 12 Lindström C, Aman J, Norberg AL. Increased prevalence of burnout symptoms in parents of chronically ill children. Acta Paediatr; 2010:427-32. 13 Stawowczyk E, Kawalec P, Kowalska-Duplaga K, Mossakowska M. Productivity Loss Among Parents of Children With Inflammatory Bowel Diseases in Relation to Disease Activity and Patient’s Quality of Life. J Pediatr Gastroenterol Nutr; 2020:340-345. 14 Zand A, Kim BJ, van Deen WK. et al. The effects of inflammatory bowel disease on caregivers: significant burden and loss of productivity. MC Health Serv Res; 2020:556. 15 Leeman J, Crandell JL, Lee A. et al. Family Functioning and the Well-Being of Children With Chronic Conditions: A Meta-Analysis Res Nurs Health; 2016:229-43. Conflict of interest: Prof. Dr. Szymanska, Edyta: No conflict of interest Kotkowicz Szczur, Marta: No conflict of interest Kisielewski, Rafal: No conflict of interest Kierkuś, Jarosław: Grant: Nestle Other: Egis, Nutricia, Abbvie, Mundipharma, Nestle
Szymańska et al. (Thu,) studied this question.