Fragilidades no cuidado em saúde às pessoas com Desordens Relacionadas ao Glúten (DRG)

Abstract

Gluten-related disorders (GRD) are a group of chronic conditions, of autoimmune or non-autoimmune etiology, triggered by continuous exposure to prolamins - proteins present in cereals such as wheat, rye and barley, popularly known as gluten. GRD affect 1 to 6% of the population, with a heavy burden in which concerns a higher risk of short-term and long-term morbidity and mortality. Since 2009, the Brazilian Ministry of Health put forth a Clinical Protocol of Therapeutic Guidelines for Celiac disease. However, patients with GRD often complaint regarding both the lack of knowledge of health professionals in this issue and the difficulties related to current health care. This has lead to increasing difficulties in both treatment and diagnosis. Present work adds further knowledge in which concerns registering GRD patient s experience and concerns in the light of several theoretical models. We sought to further understand the main weaknesses in the health care service, as perceived by people with GRD. A netnographic study was carried out at the Viva Sem Gluten group (Facebook), currently the largest online community of people with DRG, with ≈50.000 participants between both people with DRG and their families. A search was performed on the group s records, which is public, using keywords that would allow for a maximum number of results concerning health care of people with DRGbetween September 2011 and February 2017. Data were grouped into categories using the software NVivo, Starter version, from QSR International. Content analysis was carried out, with emphasis on thematic analysis, adopting the theoretical references on health care, gluten-related disorders and the Clinical Protocol of Therapeutic Guidelines for Celiac Disease. Data analysis revealed that patients with DRG were exposed to food and nutritional insecurity due to the high cost of ready and safe products and cross contamination of foods naturally free of gluten, even in a hospital setting. Issues experienced by the Group also included emotional aspects, namely the mourning caused by the abrupt change of the diet and by the prejudice and banalization of DRG, including by health professionals. The search for a diagnosis and adequate treatment are often described as a crusade, due to the several weaknesses in current health care, as reflected by the lack of up- to-date knowledge of healthcare professionals and by issues regarding practitioner-patient relationship, such as neglecting reported complaints from DRG patients. All these difficulties lead to the voluntary exclusion of gluten and to quitting on further medical diagnosis or advice. Weaknesses in health care, and late diagnoses also contribute to an increased risk of complications and fatalities. However, albeit so many known weaknesses, the VSG group has stood out in its role of group support and fellowship network, further contributing to the clarification of countless people with DRG and their empowerment. Main findings of this study point towards the need for health professionals further qualification in regards to the diagnosis and healthcare of DRG patients and to additional understanding of its intricacies. Data points towards an urgent regulation of Good Practices involving both care with gluten- free foods and cross contamination risk with this prolamin, aiming to assure Nutritional Food Safety (NFS) of people with DRG within these institutions. They also indicate the need to develop public policies that guarantee access to adequate and healthy food for people with DRG