Social and psychological portrait of a child with celiatic disease and his family: results of a pilot study

Introduction. The history of celiac disease research spans more than one millennium, but it is only in the middle of the 20th century that the causal role of gluten was proved. Moreover, the 75 years since then were marked by impressive achievements that enabled an understanding of the nuances of pathogenesis, the development of highly informative diagnostic methods, and the identification of trends in drug treatments for gluten-associated diseases. Given that gluten intolerance and the resulting group of pathological conditions are widespread in the human population as a whole, studies of the quality of life, socio-economic and psychological aspects of the patients’ lives and their immediate environment are of particular value. Purpose of the study. To examine whether children with celiac disease and their immediate environment are satisfied with the availability and quality of social support measures. Materials and methods. This study was based on the results of an online survey conducted among 179 respondents (children, parents and guardians) with an established diagnosis of celiac disease using an original questionnaire to study the satisfaction of celiac patients with the availability and quality of social support measures. Results and discussion. The results of the study suggest that celiac disease in children has a multidimensional impact on the family’s daily life, going beyond clinical issues and affecting a wide range of social, organizational and psychological aspects, representing not only a medical problem, but also a persistent source of social difficulties, which necessitates comprehensive interdisciplinary support. The identified difficulties in confirming the diagnosis and organizing medical support allow us to hypothesize about insufficient integration of patients with celiac disease into primary health care and the lack of medical awareness. That is, children with celiac disease and their families remain in conditions of latent social and medical instability, without receiving a full-fledged, multidisciplinary trajectory of support. At the same time, fragmentary knowledge about social support measures indicates a deficit of institutional information and opacity of mechanisms for inclusion in the care system. This allows us to conclude that celiac disease does not yet hold an important place in the social policy system and remains insufficiently taken into account when forming specialized support measures, and that there is no systemic approach to supporting this group. In addition, the survey results record a persistent impact of the disease on daily activity, including limited mobility, difficulties with organizing meals outside the home, and challenges in academic inclusion. At the same time, against the background of the relatively preserved interpersonal communications and the significant role of support from family members, we can assume the presence of compensatory mechanisms grounded in the resource potential of the immediate social environment. That is, the sustainability of families with a child suffering from celiac disease relies rather on informal resources and internal strategies than on systemic external support. Conclusion. Celiac disease in children is not only a medical problem, but also an indicator of institutional vulnerability, structural gaps in routing, support and information. Effective integration of families into the support system requires a comprehensive interdepartmental model, including: regulatory consolidation of support measures, regular updating and dissemination of information in an accessible form, expansion of gastroenterological services and development of infrastructure for a safe everyday life.

Celiac disease, Social and psychological portrait

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