Diagnosis of diabetes mellitus and living with a chronic condition: participatory study

Diagnosis of diabetes mellitus and living with a chronic condition: participatory study Background: Diabetes mellitus is one of the most serious chronic illnesses in the world due to its prevalence, economic and social effects, and negative impact on the quality of life of the affected people. The diagnosis implies changes in life habits especially related to feeding, physical activity, and constant self-care, requiring greater personal autonomy. Methods: This study aims to understand how individuals living with diabetes deal with the recognition of the chronic condition in their health care practices. This is a participatory research with a qualitative approach focusing on reflexivity. Sixteen people with diabetes mellitus were intentionally chosen, and qualified to participate in the study. The selected methodology allowed the constitution of life stories and focused on the multiple ways human beings deal with their illnesses. Results: The participants attended eight closed group meetings, with an specific methodology which benefited them to retrieve their own history as well as the multiple experiences to deal with the disease, here called Strategic Health Promotion Group (SHPG). The data produced and the dialogue between researcher and researched subjects were related to three major thematic perspectives: I) recognizing diabetes II) living with diabetes III) exercising personal autonomy. This work contains the meanings attributed to the Perspective I from which the following three categories emerged: The impact of the diagnosis, the denial of the illness, and the acceptance of the illness. It was observed that the diagnosis of a chronic illness generates a multiplicity of feelings, moving through narratives of complications and death events shared between generations. The participants expressed feelings related to denial or acceptance of the chronic condition which required an active adaptation exercising. From the current diagnosis, it was observed that new signs were added to the person’s existence, influencing their habits, health care practices and quality of life. Conclusions: The emotional aspects of subjects diagnosed with diabetes mellitus strongly influence the acceptance or denial of the illness, interfering in their personal adherence to treatment. As a chronic condition, involving life-longing care practices, which intervenes in therapeutic participation, it is indispensable to respect and to encourage the personal autonomy of the subjects. Keywords: Chronic illness, Participatory research, Health promotion, Personal autonomy * Correspondence: joseadailtonmec@gmail.com Federal University of Rio Grande do Norte, Natal, Brazil © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Silva et al. BMC Public Health (2018) 18:699 Page 2 of 8 Background to rules that are not always well accepted, such as healthy Chronic non-transmissible diseases represent a major eating, correct and regular use of medication, including problem in the world, being the main cause of death oral anti-diabetic drugs and/or insulin, and today [1]. Diabetes mellitus is one of the most worrying self-monitoring of blood glucose. Living with a chronic chronic diseases for its major economic and social im- condition can be very threatening because it affects all the pact, reported as responsible for 11.6% of the health care signs of the subjects, changing their routine and their expenses worldwide in 2010 [2]. According to the World relatives’ routine [8]. Health Organization [3], in 2014, a total of 422 million The results presented in this article are a part of the re- adults had diabetes and in 2012 there were 1.5 million search Project “Health Promotion Strategies: Autonomy deaths caused by this illness. challenges in subjects living with Diabetes Mellitus”,from Diabetes mellitus is defined as a syndrome caused by the Collective Health Department at the Federal University several etiologies and is characterized by a metabolic of Rio Grande do Norte. Its main objective is to “compose dysfunction with a degenerative potential that involves health promotion strategies inadirectiontostimulate the energetic sources resulting from changes in the produc- autonomy and health care of people living with diabetes”. tion, secretion and/or inability of the insulin to ad- For doing so, it was initiated the creation of a Strategic equately exercise its effects. It is a chronic condition that Health Promotion Group (SHPG). In this article, results are requires the subjects living with the illness to have a presented around the objective of “sharing the experiences continuous self-management of the lifestyle and adapta- of people living with diabetes as well as how they build and tion to the illness [4]. fortify their autonomy, facing the necessity of lifestyle Diabetes mellitus is often considered a silent illness changes and their participation in the therapeutic and and linked to poor health care. In fact, 46.5% of the af- health care decisions”. The importance of this study for fected people are unaware of their condition [5]. Thus, public and collective health is linked to the need of recogni- the news of having diabetes is often abrupt and may be tion not only of the subject’s own perceptions and life strat- accompanied by feelings of denial and/or difficulty in egies, but also to the significance of searching new forms of the treatment participation, which involves important understanding their condition, through dialogue, as well as changes in lifestyle. the discomfort related to the impact of the diagnosis and its The projections for diabetes mellitus are worrying. Cur- daily treatment. This project also intends to elaborate rently, 10% of the world population lives with the illness strategies directed to therapeutic participation, proposing and it is estimated that, by 2025, 300 million people will innovative ways of dealing and taking care of the health of be affected. At that time, 75% of people with diabetes will subjects with a chronic condition. be residents of developing countries, as a 170% increase in The working groups of people living with diabetes are gen- new cases is estimated for these countries, while an in- erally associated to linked diseases like high blood pressure crease of 42% is expected for in developed countries [6]. and are very common at Basic Health Care. However, they The statistics in Brazil are close to the world average. are frequently directed only to a biomedical approach con- However, it is estimated that by 2030, the country will sisting of: prevention, control and treatment of diseases [9], occupy the 6th position in the world ranking, with 11.3% diverging from the emancipatory actions of subjects that are of the population affected by the illness [2]. proposed by Health Care Promotion actions. In the Brazilian However, more than preventive actions, the health care Health System, groups like the SHPG - that is described here system needs health promoting actions that impact on the - could help to qualify the processes of Basic Health Care, quality of life of the subjects already affected by the illness. consolidating its attributes and fortifying Health Care It is necessary to stimulate a greater autonomy for Promotion actions in accordance with the principles and self-care actions and participation into the required treat- guidelines of the National Health Promotion Policy. ment, strategies that go beyond the use of medications. The knowledge about the perception of patients who The main interferences into different diabetes types of live with diabetes is important because of the psycho- treatment are caused by the negative emotional reactions social discomfort and the continuous treatment hinder that arise before the need for permanent care to control the participation of these subjects to their new way of the illness. The subject’s emotional background can set life. The present study aims to understand how subjects difficulties to the adoption of self-care actions and with diabetes deal with the fact that they are chronically participation in the treatment [7]. ill and how being aware of their situation influences the The treatment of diabetes encompasses a number of way they take care of their health. factors, some of which are specific, other global. Overall, they all involve a permanent education and the modifica- Methods tion of a lifestyle from the very moment that the disease This study is a participatory research with a qualitative has been diagnosed. For subjects, this includes submitting and reflexivity-centered approach. It followed the Silva et al. BMC Public Health (2018) 18:699 Page 3 of 8 recommendations of the Research Ethics Committee Those experiences were initially related to the illness, (REC) from the Onofre Lopes University Hospital but the narratives moved beyond it to connect this ex- (HUOL) at the Federal University of Rio Grande do perience with other aspects of their life’s complexity. Norte (UFRN). Each meeting was defined based on a chosen topic com- A participatory research strategy was adopted consider- ing from the previous one. The role of the researcher in ing the production of knowledge guided by shared care, the coordination of a participatory group is to mediate where the subject who needs health attention, in this case, the dialogues between the subjects that are a part of the people living with a diabetes mellitus condition, are at the research, without missing the objective of contributing center of the stage. An epistemological, clinical and meth- with the shared management of the participants. odological approach based on shared care stimulates the This type of group management has been developed in preeminence and autonomy of the subjects, considering researches about mental health in Brazil and Canada the individual, familiar, social and cultural dimensions of [12, 14]. Those experiences have taught us the import- the person who is under its view and treatment [10]. ance of dissipating the centrality of the researcher – ob- Therefore, a participatory research approach shows its server to evidence the collective realm where knowledge dynamism and capacity of being a strategy for social construction through shared experiences manifests itself. change, relying on the mutual collaboration among the In such approaches, the shared management brings up subjects who take part on the process [11]. the necessary opening for the production of each group’s Following this perspective, we adopted the participatory identity, and, consequently, the production of a shared research strategy described by Passos et al. [12]: in this group autonomy. proposition, knowledge and awareness are first developed In terms of the techniques used to collect the narratives, in each group,for subsequent collective comprehension, it is necessary to point out that the meetings were audio being the responsibility of the researchers to take care of recorded and the speeches were transcribed literally and their own intervention by a reflexive approach, character- in their complete versions. The produced data has been izing the ethical-political nature of the research. classified into three main thematic axes composed by the Subjects with both type 1 and type 2 diabetes were following dialogue stages: I) recognizing diabetes; II) living intentionally chosen to participate in the group as long with diabetes; and III) exercising personal autonomy. The as they agreed with being part of the experience, as long current study contains the analysis of the perspective I as they were monitored by a health unit located in Santa “Recognizing diabetes”, which deals with the impact of the Cruz, a small town from Rio Grande do Norte – Brazil, diagnosis and the process of acceptance and denial of the which was the research field qualified to participate in chronic condition. For the sake of a better organization, the study. The total number of voluntary participants we chose to have the statements that compose the per- was justified as an intentional sample derived from a spective I in categories defined upon the objective of the specific population of 70 (seventy) people diagnosed study and quoted above. with diabetes mellitus belonging to this health unit. The The content of the data was analyzed under Minayo’s minimal number defined to compose the group was of perspective [15], and under the directions of a reflexive 12 subjects, being the maximum a number of 25 sub- approach, which in this study is considered as the ability jects. To define the minimum and maximum values of of the subjects to monitor their own actions and their the sample there was a specific operational criteria that own desires through traditional principles of promoting would allow the participants to feel assisted, to commu- the dialogue. For researchers, the reflexive dialogue can nicate in an effective way, to acknowledge and recognize be established within themselves and their subjective each other and, finally, to build the particular dynamics preferences as well as with the collective experience, of the group identity [13]. The sample size should also pursuing an attitude of continuous anxiety about one’s allow the coordinators to feel comfortable during the own actions, the preconceptions involved in each deci- process of assessing the communication of the group sion, and the methods used to filter, to control, to define, members. We also considered the potential loss of par- and to guide the social processes [16]. ticipants during the programmed 8 (eight) sessions, by Written informed consent was obtained from all spontaneous quitting or personal impediments. The participants. In order to maintain confidentiality, each eight encounters treated specific topics chosen by the in- participant was identified by the name of an Ancient dividuals participating in the group. This closed group is Greek city. Despite its geographical distance, this in the category of the denominated SHPG – Strategic country has a particular relevance in the etiology of Health Promotion Group. two central words that guide this research experience: The encounters took place between May and August diabetes (διαβαίνειν)and autonomy (ατόνομος). In 2017, with a specific methodology oriented to capture this study, the participants’ names are: Corfu, Fira, the life stories and multiple experiences of the subjects. Mykonos, Meteora, Veria, Atenas, Heraklion, Creta, Silva et al. BMC Public Health (2018) 18:699 Page 4 of 8 Rhodes, Castória, Micenas, Patras, Delfos, Zakynthos, Other speeches also drew attention to the recognition Epidauros and Volos. of hereditary factors in the diagnosis of the illness. How- ever, there is again concern and fear about the prognosis, Results when they compared their situation to that of people All 16 (sixteen) participants live with Type 2 Diabetes they had heard of in their life experiences: Mellitus, of whom 12 (twelve) are females and 4 (four) “I come from a diabetic family, my brothers and sisters are males aged from 57 to 90 years. have it. One of them is already dead”. (Meteora). Based on the perspective I “Recognizing diabetes” and “I’m also from a diabetic family. Most of my uncles on the objectives of this study, the results were orga- had problems (with diabetes) and died”. (Véria). nized into three categories discussed below, namely: the “My brother died of diabetes, he lost both legs, so I’m impact of the diagnosis; the denial of the illness and the afraid because I remember this when my diabetes (glu- acceptance of the illness. cose) gets too high...” (Volos). In this category, it was observed that the dialogues in The impact of the diagnosis a group caused important reflections in the way each This category shows how subjects reacted to the dis- participant faced the diagnosis, which can influence the covery of their chronic condition, which was mostly different stages of acceptance and denial of the chronic unexpected. The impact of the news caused several condition and in its ways of carrying out self-care as well reactions, a mix of emotions and feelings, such as as in dealing with institutional health care. despair, preoccupation, unrest and even panic, when the information was disclosed by means of a diagnos- tic test or a health professional: The denial of the illness “I discovered it at age 42... I was a bit overweight. The We imaginethatthe waytodeal with thediagnosis andthe doctor said: you are diabetic! What a shock! I almost new ways of carrying on with life directly influences the ac- died!” (Fira). ceptance or denial of the illness. This category is composed “I panicked. I thought I was never going to be normal by the dialogues concerning the non-acceptance of the anymore in my life. I panicked! Do you know what panic chronic condition attributed, mainly, to the limitations of is?” (Zankythos). daily life implied by having to live with a long-term illness. As diabetes sometimes has a silent character, in some Denial is present in the reactions of dissatisfaction cases it can be discovered with important previously in- exposed by Castória. stalled complications, and this can lead to the feeling of “You feel unhappy by having diabetes. There are days anger and revolt at the moment of diagnosis, as shown that I meditate a lot, there are times when I am alone, in the speech of Patras. sometimes I cry, then I try to visit someone; I want to get “At first I felt anger, I was angry at the time, because that thought out of my head. I cry because of diabetes when I discovered I was already harmed, I already had and because of the difficulties too”. (Castória). my vision affected, then at the time I felt revolted, angry”. For Veria, the dissatisfaction, revolt and non-acceptance (Patras). comes from the lack of the indicators control of the illness For Heraklion, however, the reaction to the chronic caused by many factors: condition was not immediate, perhaps due to the “I was diagnosed four years ago ... but I cannot control non-correlation of the diagnosis of diabetes with a it, I could never control it, I take insulin, but I cannot chronic condition: control it ... I thought it was a simple thing. I thought I “At that time (the diagnosis) I confess that I did not feel was going to control it”. (Veria). anything... only with time I started to feel the difficulties Other participants, in the dialogue in a large group, and started to get more... I wouldn’t say unhappy, but end up expressing the dissatisfaction with the illness worried!” (Heraklion). resulting from abrupt changes in lifestyle, not always Still on the impact of the diagnosis, we also detected a tolerated, especially when related to food: change of attitude of some participants in relation to the “It’s very annoying to live with diabetes, you cannot eat recognition of diabetes. Some expressed certain predict- everything, and you have to be on a diet”. (Heraklion). ability in relation to the illness, especially because of her- “I got like this because it is an illness that forbids us to edity from the histories of complications and deaths eat everything, I miss it, especially the sweet stuff”. shared between generations, as we can see below: (Epidauros). “I did not suspect (of the illness) but I had doubts, On the other hand, the participants also take the because of the family, my father died at 45, most of group to reflect on stigma towards the illness as well as Dad’s family all died of diabetes... everything is on the fact that seeking to adapt to the illness, doesn’t hereditary”. (Mykonos). always mean accepting it: Silva et al. BMC Public Health (2018) 18:699 Page 5 of 8 “I feel sad because of this diabetes, I tell everyone it emotion and diabetes, where one directly influences the was a nickname they gave me, I do not say that I am other [17]. It is also known that the emotional impact diabetic, it was a nickname they gave me”. (Micenas). generated by the diagnosis and its entire burden triggers “No one gets rid of this. Diabetes is forever. But, I con- the complications of diabetes mellitus [17]. trol it and I live”. (Volos). In this same perspective, some studies have pointed Thus, living with diabetes is complex and out a greater vulnerability of people living with chronic non-acceptance can come from multiple factors, all of conditions to the emotional instabilities that can vary which permeate the meanings people give to their life- from mild to serious problems, such as severe depres- style habits. sion, and that would be associated with the therapeutic rigour of the illness [18]. Acceptance of the illness It is important to understand that diabetes has a Acceptance of the illness, the last category analyzed, negative impact on the quality of life of the subjects, may be directly related to the control of the illness and especially due to the emotional changes, the limiting strategies for overcoming and living with the new situation, and the process of (non-)acceptance of the ill- chronic condition. It is evident that there is an under- ness. A study carried out in Brazil that measured the standing of the importance of self-care for their quality of life of patients, identified that among the well-being and on their health-illness process: subjects studied, physical and emotional factors were the “I take the medicine on time, I do not eat food I’m not most determinant for their quality of life, and the emo- supposed to eat, we cannot eat them! We need to adapt”. tional impact occupied the second place, corresponding (Corfu). to a value of 77.2%. The authors explained that diabetes “You have to try to do those physical activities that are mellitus interferes in the patients’ quality of life in a good for diabetes: you have to try to walk, exercise, swim, negative way [19]. it’s extremely good for us”. (Rhodes). Stillon the diagnosisofDiabetesMellitus, some Patras’s speech also contributes to the understanding authors [17] mention that the diagnosis is made that by controlling the illness, acceptance becomes more through routine tests or through the suspicion of feasible, as an intrinsic relationship between symptoms of the illness. They also affirm that, as in accepting-controlling and controlling-accepting. the present research, the disclosure and confirmation “Diabetes is an illness that we will live with and we of the diagnosis generates many feelings before the have to try to be happy... under control! We need to try new chronic condition. to control every day more... food, physical activity, medi- In the context of acceptance, denial, and the impact of cine, taking them correctly, always up to date with the diagnosis, we can describe the stages of mourning ex- medication”. (Patras). plained by Elisabeth Kubler-Ross [20] in her book “On In this category, reflexivity is also raised about the Death and Dying”: denial, anger, bargaining, depression exchange of experiences of the group. The dialogues and acceptance. Some studies [21, 22] have shown that with the participants could facilitate the acceptance of the impact of the diagnosis of a chronic illness resembles the chronic condition, as it’s seen in the speech of the stages of mourning, as it is always very difficult and Epidauros: affects the self-image and self-esteem. People that re- “Today I think I’m more relaxed, I think I’mmore ceive the diagnosis, just as mourning, go through several optimistic, to know what diabetes is, how we should stages where feelings can go through several phases. The live together andwhattodotohavebetter health”. stages of mourning should be used in a flexible way and (Epidauros). help a comprehensive understanding of the subjects di- Accepting a chronic illness is a gradual process where agnosed with a chronic illness [21]. the subjects first become aware of their situation, by this Fear was a common reaction in the dialogues of the means, facilitating their adaptation. This contributes to a participants of this study, especially when they reported better quality of life and decreases the risk of complica- traumatic family experiences with complications and tions related to the illness. deaths caused by diabetes. Some studies pointed out that sometimes the awakening to the illness can cause bad Discussion feelings when, for example, the patients are aware of The discourses of the participants regarding the impact histories with traumatic prognoses such as death or am- of the diagnosis made it possible to perceive that a mix- putations, and because of this, they tend to fear the ture of feelings emerge. They include preoccupation, repetition of those events with risk of tragic ends, such panic, and even anger and consequently denial of the as those observed in relatives or close friends, especially condition. This was also observed in another study that arising from the fear of chronic complications of the identified the existence of a relationship between illness [23, 24]. Silva et al. BMC Public Health (2018) 18:699 Page 6 of 8 The acceptance of a chronic condition is a result of a participation in the care of the subjects, improving their transformation that takes place gradually in the behavior life quality [26–28]. of the subjects, moving in the direction of a greater The group experience can also potentialize changes in awareness and adaptation to the illness. These aspects lifestyle. However, changes in life habits are complex; it directly contribute to their responsibility towards their is a difficult and slow process, particularly with regard to overall health state. When patients accept their condi- food. Eating habits are related to cultural, economic and tion, they find an inner peace, thus favoring acceptance social factors [25]. We identified in the speeches of the and better adaptation to their chronic condition [8]. participants that food is one of the most difficult factors However, the difficulty of accepting a chronic condi- to control the illness. Other studies [19, 29] have stated tion brings subjects to a particular dialectic dynamic in that the negative impact on the quality of life is influ- their lives. Accepting the chronic condition requires that enced by the new lifestyle, which should be adopted, and the person recognizes and learns somehow to live with especially because people with diabetes need more food the discomfort and pain generated by the restrictions restriction, which has a greater impact on therapeutic imposed by the new habits. It is necessary to reflect on participation and health care. Thus, food re-education is alienated acceptance or adaptation to new habits, always one of the greatest challenges faced by some people with re-evaluating the health practices so as not to stigmatize diabetes mellitus, where negative feelings related to food subjects, because words such as “patients, diabetic per- control occur, such as the difficulty to meet the goals set son, carrier” reduce the subjects to objects and as they by the health team and consequent frustration [18]. are submitted to passivity. Accepting treatment, in a Recognition of diabetes, in its broadest sense, emerges more minimalist conception, “implies recognizing one- not only through the knowledge of clinical diagnosis, self as having a significant limitation, determined by a but also through the repositioning of the subjects in chronic illness. It implies, therefore, a loss of autonomy” their ways of living and taking care of health. It goes [25]. The sense of being stigmatized was exalted in this through reflexivity, looking and re-signifying the percep- study. In this sense, autonomy is fundamental even to tion of themselves and their social network, identifying favor therapeutic participation into the new ways of their beliefs, values and establishing a relationship of dealing with life. mutual support in the search for autonomy. It is known During the dialogues with the group, we also noticed that recognizing oneself in the condition of living with a how the impact of the diagnosis and new ways of living chronic illness is fundamental for the good performance influence on the emotional state of those subjects. The of self-care actions and, consequently, for their participa- fact of having to live with a chronic illness causes tion on treatments [7]. It is also fundamental to guaran- discomfort and dissatisfaction because the condition tee the control of their own lives, so that the person may requires a complex and long-term treatment which im- be able to deal with the limitations that are imposed by pacts on the whole social network in which the subject the diabetes mellitus, with co-responsibility as a funda- is inserted. This demonstrates the importance of the ex- mental aspect for the success of the treatment and for change of experiences in the pursuit for greater the quality of life [30]. Participation through the autonomy. exchange of experiences in the SHPM was able to influ- It is known that exchanging experiences also influ- ence this context in a positive way. ences on a better acceptance of chronic conditions, Providing autonomy to the subjects means to con- because when it is possible to live with the illness, sider them as owners of conceptions and experiences there is time for a greater acquisition of knowledge, that directly influence their relationship with both generating greater ease in the management of the health professionals and their own health-illness treatment [18]. Thus the experience acquired process. Thus, the experience of illness and self-care individually is strengthened when transmitted to is taken into account [21, 31]. others through group dialogues that address indivi- Furthermore, it is important to work and encourage dual experiences in search of collective pacts. the personal autonomy of subjects who live with dia- Therapeutic participation is a conditional factor for betes because they are full of experiences that influence improving the quality of life of subjects with chronic dis- their ways of living with the chronic condition. Partici- eases. Studies have indicated that the therapeutic success patory studies are still insufficiently explored in the in patients with diabetes mellitus is linked to the extent context of groups of people living with diabetes from the to which the subjects act and commit themselves for perspective of autonomy. Moreover, further studies are their well-being, as for example by monitoring their needed to deepen the theme and to make it possible the glycemic status, changing their life habits and making construction of new propositions. It is also necessary to correct use of medications. Counseling about the illness apply the SHPG in multi-centric studies to improve the and its treatment is very important for therapeutic analysis related to the subject’s mutual sharing of illness Silva et al. BMC Public Health (2018) 18:699 Page 7 of 8 experiences and narratives in therapeutic participation beings, therefore grounded on ethical principles, but can be made available on the basis of reasonable request to the corresponding author. and health care, especially on the stages of acceptance and denial of the illness. Authors’ contributions JAS, ECFS and CCMC participated in the drafting, design, analysis and interpretation of the results, writing and approval of the version to be Conclusions published. HSB, EELCF and AGEB participated in data interpretation, writing This study allowed us to observe that the emotional and critical review. AGEB participated in translation of the article. The final aspects involved in the diagnosis of diabetes mellitus can version of this article has been read and approved by all the authors. influence whether or not the illness is accepted. The way Ethics approval and consent to participate in which the subjects recognize diabetes and re-evaluate This research is a part of a larger study entitled “Health Promotion Strategies: their habits influence their participation into treatment, The Challenge of Autonomy for People Living with diabetes mellitus”. Since because this is a chronic condition in which changes are it was a research involving human beings, the study followed the criteria and requirements established by the Resolution 466 of December 12, 2012, often marked by their duration and by the risk they offer. of the National Health Council, obeying the recommendations of the The denial of the chronic condition results in a greater Research Ethics Committee (REC) of the Onofre Lopes University Hospital difficulty in developing self-care, influencing the lack of (HUOL) of the Federal University of Rio Grande do Norte (UFRN) under Opinion n° 1.868.237 CAAE n° 61,947,616.4.0000.5292. The respondents were participation into the different approaches of treatment. also given the opportunity to review and revise the transcripts of their Denial of the illness seems to be more related to the dif- speeches. Informed consent written was obtained from all participants. The ficulties in controlling the illness resulting from changes ethical approval opinion is available on Brazil Platform http:// plataformabrasil.saude.gov.br/visao/publico/indexPublico.jsf in lifestyle. It is a difficult process for the subjects and re- quires a slow adaptation because an appropriate treatment Competing interests needs the understanding of the implications of such The authors declare that they have no competing interests. changes in the subjects’ lives. With regard to the acceptance of the chronic condition, Publisher’sNote we observed that it does not correspond to a static phase, Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. but to a process of transformation that happens gradually. The subjects need to have a greater understanding about Received: 11 December 2017 Accepted: 30 May 2018 their personal recognition and their ways of dealing with health. 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Educação em saúde: o trabalho de grupos em atenção primária. Rev APS. 2009;12(2):221–7. 14. Passos E, Otanari TMC, Emerich BF, Guerini L. O comitê do cidadão como estratégia de co-gestão na pesquisa participativa no campo da saúde mental em. Quebec Ciênc Saúde Colet. 2013;18(10):2919–28. 15. Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. 12. ed. São Paulo: Hucitec; 2010. 16. Colombo E. Reflexividade e escrita. Educação. 2016;41(1):15–26. https://periodicos. ufsm.br/reveducacao/article/view/20690/pdf. Access on January 4th, 2017 17. Ferreira DSP, Daher DV, Texeira ER, Rocha IJ. Repercussão emocional diante do diagnóstico de diabetes mellitus tipo 2. Rev Enferm UERJ 2013; 21(1): 41–46. http://www.e-publicacoes.uerj.br/index.php/enfermagemuerj/article/ view/6346. Access on September 1st, 2017. 18. Ramos LB, Santana CN, Araújo LLC, Jesus GP, Gois CFL, Santos FLSG, et al. Qualidade de vida, depressão e adesão ao tratamento de pessoas com diabetes mellitus tipo 2. Rev Bras Cien Saúde. 2017;21(3):261–8. http://periodicos.ufpb.br/ index.php/rbcs/article/viewFile/29085/17785. Access on December 1st, 2017 19. Diaz N, Moreira PB, Haluch RF, Ravazzani AC, Kusma SZ. The impact of type 2 diabetes mellitus on quality of life. Rev Med UFPR. 2016;3(1):5–12. http://revistas. ufpr.br/revmedicaufpr/article/view/46380/pdf. Access on January 4th, 2017 20. Kubler-Ross E. Sobre a morte e o morrer. Martins Fontes: São Paulo; 1989. 21. Silva JA. Promoção da saúde: estratégias para a autonomia e qualidade de vida do sujeito com diabetes [dissertação]. Natal (RN): UFRN; 2014. https:// renasf.fiocruz.br/sites/renasf.fiocruz.br/files/disseracoes/2014_UFRN_ Jos%C3%A9%20Adailton%20da%20Silva.pdf. Access on January 4th, 2017. 22. Beltrame V, Brugnerotto M, Trentini M, VSF M. A convivência com diabetes mellitus tipo 2. Saúde Meio Ambient. 2012;1(1):105–6. http://www. periodicos.unc.br/index.php/sma/article/view/170. Access on July 4th, 2017 23. Cyrino A. Entre a ciência e a experiência: uma cartografia do autocuidado no Diabetes. UNESP: São Paulo; 2009. 24. Cecilio SG, CLGB B, Vilaça CP, SMF S, Vargas EC, Torres HC. Aspectos psicossociais do viver com diabetes Mellitus na promoção do autocuidado. Rev Rene. 2016;17(1):44–51. http://www.redalyc.org/articulo.oa?id= 324044160007. Access on August 26th, 2017 25. Péres DS, Santos MA, Zanetti ML, Ferronato AA. Dificuldades dos pacientes diabéticos para o controle da doença: sentimentos e comportamentos. Rev Lat- am Enf. 2007;15(6):1–8. http://www.scielo.br/scielo.php?pid= S010411692007000600008&script=sci_arttext&tlng=pt. Access on May 26th, 2017 26. Sweileh WM, Zyoud HS, Nab’a RJA, Deleq MI, Enaia MI, Nassar SM, et al. Influence of patients’ disease knowledge and beliefs about medicines on medication adherence: findings from a cross-sectional survey among patients with type 2 diabetes mellitus in Palestine. BMC Public Health. 2014;30(14):94. https://bmcpublichealth.biomedcentral.com/track/pdf/10.1186/1471-2458-14- 94?site=bmcpublichealth.biomedcentral.com. Access on August 2nd, 2017 27. Saleh F, Mumu SJ, Ara F, Hafez MA, Ali L. Non-adherence to self-care practices & medication and health related quality of life among patients with type 2 diabetes: a cross-sectional study. BMC Public Health. 2014;7(14):431. https:// bmcpublichealth.biomedcentral.com/track/pdf/10.1186/1471-2458-14- 431?site=bmcpublichealth.biomedcentral.com. Access on May 5th, 2017 28. Ambaw AD, Alemie GA, Yohannes SMW, Mengesha ZB. Adherence to antihypertensive treatment and associated factors among patients on follow up at University of Gondar Hospital, Northwest Ethiopia. BMC Public Health. 2012;10(12):282. https://bmcpublichealth.biomedcentral.com/track/ pdf/10.1186/1471-2458-12-282?site=bmcpublichealth.biomedcentral.com. Access on August 28th, 2017 29. Ribeiro JP, Rocha AS, Popim RC. Compreendendo o significado de qualidade de vida segundo idosos portadores de diabetes mellitus tipo II. Esc Anna Nery. 2010;14(4):765–71. http://www.scielo.br/pdf/ean/v14n4/ v14n4a16.pdf. Access on August 26th, 2017 30. Bernini LS, Barrile SR, Mangili AF, Arca EA, Correr R, Ximenes MA, et al. O impacto do diabetes mellitus na qualidade de vida de pacientes da Unidade Básica de Saúde. Cad Bras Ter Ocup 2017; 25(3): 533–541. http:// www.cadernosdeterapiaocupacional.ufscar.br/index.php/cadernos/article/ view/1531/880. Access on September 26th, 2017. 31. Yoshida VC, Andrade MGC. O cuidado à saúde na perspectiva de trabalhadores homens portadores de doenças crônicas. Interf - Comunic Saúde Educ. 2016;20(58):597–610. http://www.redalyc.org/articulo.oa?id= 180146193007. Access on August 26th, 2017 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Public Health Springer Journals

Diagnosis of diabetes mellitus and living with a chronic condition: participatory study

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Medicine & Public Health; Public Health; Medicine/Public Health, general; Epidemiology; Environmental Health; Biostatistics; Vaccine
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Abstract

Background: Diabetes mellitus is one of the most serious chronic illnesses in the world due to its prevalence, economic and social effects, and negative impact on the quality of life of the affected people. The diagnosis implies changes in life habits especially related to feeding, physical activity, and constant self-care, requiring greater personal autonomy. Methods: This study aims to understand how individuals living with diabetes deal with the recognition of the chronic condition in their health care practices. This is a participatory research with a qualitative approach focusing on reflexivity. Sixteen people with diabetes mellitus were intentionally chosen, and qualified to participate in the study. The selected methodology allowed the constitution of life stories and focused on the multiple ways human beings deal with their illnesses. Results: The participants attended eight closed group meetings, with an specific methodology which benefited them to retrieve their own history as well as the multiple experiences to deal with the disease, here called Strategic Health Promotion Group (SHPG). The data produced and the dialogue between researcher and researched subjects were related to three major thematic perspectives: I) recognizing diabetes II) living with diabetes III) exercising personal autonomy. This work contains the meanings attributed to the Perspective I from which the following three categories emerged: The impact of the diagnosis, the denial of the illness, and the acceptance of the illness. It was observed that the diagnosis of a chronic illness generates a multiplicity of feelings, moving through narratives of complications and death events shared between generations. The participants expressed feelings related to denial or acceptance of the chronic condition which required an active adaptation exercising. From the current diagnosis, it was observed that new signs were added to the person’s existence, influencing their habits, health care practices and quality of life. Conclusions: The emotional aspects of subjects diagnosed with diabetes mellitus strongly influence the acceptance or denial of the illness, interfering in their personal adherence to treatment. As a chronic condition, involving life-longing care practices, which intervenes in therapeutic participation, it is indispensable to respect and to encourage the personal autonomy of the subjects. Keywords: Chronic illness, Participatory research, Health promotion, Personal autonomy * Correspondence: joseadailtonmec@gmail.com Federal University of Rio Grande do Norte, Natal, Brazil © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Silva et al. BMC Public Health (2018) 18:699 Page 2 of 8 Background to rules that are not always well accepted, such as healthy Chronic non-transmissible diseases represent a major eating, correct and regular use of medication, including problem in the world, being the main cause of death oral anti-diabetic drugs and/or insulin, and today [1]. Diabetes mellitus is one of the most worrying self-monitoring of blood glucose. Living with a chronic chronic diseases for its major economic and social im- condition can be very threatening because it affects all the pact, reported as responsible for 11.6% of the health care signs of the subjects, changing their routine and their expenses worldwide in 2010 [2]. According to the World relatives’ routine [8]. Health Organization [3], in 2014, a total of 422 million The results presented in this article are a part of the re- adults had diabetes and in 2012 there were 1.5 million search Project “Health Promotion Strategies: Autonomy deaths caused by this illness. challenges in subjects living with Diabetes Mellitus”,from Diabetes mellitus is defined as a syndrome caused by the Collective Health Department at the Federal University several etiologies and is characterized by a metabolic of Rio Grande do Norte. Its main objective is to “compose dysfunction with a degenerative potential that involves health promotion strategies inadirectiontostimulate the energetic sources resulting from changes in the produc- autonomy and health care of people living with diabetes”. tion, secretion and/or inability of the insulin to ad- For doing so, it was initiated the creation of a Strategic equately exercise its effects. It is a chronic condition that Health Promotion Group (SHPG). In this article, results are requires the subjects living with the illness to have a presented around the objective of “sharing the experiences continuous self-management of the lifestyle and adapta- of people living with diabetes as well as how they build and tion to the illness [4]. fortify their autonomy, facing the necessity of lifestyle Diabetes mellitus is often considered a silent illness changes and their participation in the therapeutic and and linked to poor health care. In fact, 46.5% of the af- health care decisions”. The importance of this study for fected people are unaware of their condition [5]. Thus, public and collective health is linked to the need of recogni- the news of having diabetes is often abrupt and may be tion not only of the subject’s own perceptions and life strat- accompanied by feelings of denial and/or difficulty in egies, but also to the significance of searching new forms of the treatment participation, which involves important understanding their condition, through dialogue, as well as changes in lifestyle. the discomfort related to the impact of the diagnosis and its The projections for diabetes mellitus are worrying. Cur- daily treatment. This project also intends to elaborate rently, 10% of the world population lives with the illness strategies directed to therapeutic participation, proposing and it is estimated that, by 2025, 300 million people will innovative ways of dealing and taking care of the health of be affected. At that time, 75% of people with diabetes will subjects with a chronic condition. be residents of developing countries, as a 170% increase in The working groups of people living with diabetes are gen- new cases is estimated for these countries, while an in- erally associated to linked diseases like high blood pressure crease of 42% is expected for in developed countries [6]. and are very common at Basic Health Care. However, they The statistics in Brazil are close to the world average. are frequently directed only to a biomedical approach con- However, it is estimated that by 2030, the country will sisting of: prevention, control and treatment of diseases [9], occupy the 6th position in the world ranking, with 11.3% diverging from the emancipatory actions of subjects that are of the population affected by the illness [2]. proposed by Health Care Promotion actions. In the Brazilian However, more than preventive actions, the health care Health System, groups like the SHPG - that is described here system needs health promoting actions that impact on the - could help to qualify the processes of Basic Health Care, quality of life of the subjects already affected by the illness. consolidating its attributes and fortifying Health Care It is necessary to stimulate a greater autonomy for Promotion actions in accordance with the principles and self-care actions and participation into the required treat- guidelines of the National Health Promotion Policy. ment, strategies that go beyond the use of medications. The knowledge about the perception of patients who The main interferences into different diabetes types of live with diabetes is important because of the psycho- treatment are caused by the negative emotional reactions social discomfort and the continuous treatment hinder that arise before the need for permanent care to control the participation of these subjects to their new way of the illness. The subject’s emotional background can set life. The present study aims to understand how subjects difficulties to the adoption of self-care actions and with diabetes deal with the fact that they are chronically participation in the treatment [7]. ill and how being aware of their situation influences the The treatment of diabetes encompasses a number of way they take care of their health. factors, some of which are specific, other global. Overall, they all involve a permanent education and the modifica- Methods tion of a lifestyle from the very moment that the disease This study is a participatory research with a qualitative has been diagnosed. For subjects, this includes submitting and reflexivity-centered approach. It followed the Silva et al. BMC Public Health (2018) 18:699 Page 3 of 8 recommendations of the Research Ethics Committee Those experiences were initially related to the illness, (REC) from the Onofre Lopes University Hospital but the narratives moved beyond it to connect this ex- (HUOL) at the Federal University of Rio Grande do perience with other aspects of their life’s complexity. Norte (UFRN). Each meeting was defined based on a chosen topic com- A participatory research strategy was adopted consider- ing from the previous one. The role of the researcher in ing the production of knowledge guided by shared care, the coordination of a participatory group is to mediate where the subject who needs health attention, in this case, the dialogues between the subjects that are a part of the people living with a diabetes mellitus condition, are at the research, without missing the objective of contributing center of the stage. An epistemological, clinical and meth- with the shared management of the participants. odological approach based on shared care stimulates the This type of group management has been developed in preeminence and autonomy of the subjects, considering researches about mental health in Brazil and Canada the individual, familiar, social and cultural dimensions of [12, 14]. Those experiences have taught us the import- the person who is under its view and treatment [10]. ance of dissipating the centrality of the researcher – ob- Therefore, a participatory research approach shows its server to evidence the collective realm where knowledge dynamism and capacity of being a strategy for social construction through shared experiences manifests itself. change, relying on the mutual collaboration among the In such approaches, the shared management brings up subjects who take part on the process [11]. the necessary opening for the production of each group’s Following this perspective, we adopted the participatory identity, and, consequently, the production of a shared research strategy described by Passos et al. [12]: in this group autonomy. proposition, knowledge and awareness are first developed In terms of the techniques used to collect the narratives, in each group,for subsequent collective comprehension, it is necessary to point out that the meetings were audio being the responsibility of the researchers to take care of recorded and the speeches were transcribed literally and their own intervention by a reflexive approach, character- in their complete versions. The produced data has been izing the ethical-political nature of the research. classified into three main thematic axes composed by the Subjects with both type 1 and type 2 diabetes were following dialogue stages: I) recognizing diabetes; II) living intentionally chosen to participate in the group as long with diabetes; and III) exercising personal autonomy. The as they agreed with being part of the experience, as long current study contains the analysis of the perspective I as they were monitored by a health unit located in Santa “Recognizing diabetes”, which deals with the impact of the Cruz, a small town from Rio Grande do Norte – Brazil, diagnosis and the process of acceptance and denial of the which was the research field qualified to participate in chronic condition. For the sake of a better organization, the study. The total number of voluntary participants we chose to have the statements that compose the per- was justified as an intentional sample derived from a spective I in categories defined upon the objective of the specific population of 70 (seventy) people diagnosed study and quoted above. with diabetes mellitus belonging to this health unit. The The content of the data was analyzed under Minayo’s minimal number defined to compose the group was of perspective [15], and under the directions of a reflexive 12 subjects, being the maximum a number of 25 sub- approach, which in this study is considered as the ability jects. To define the minimum and maximum values of of the subjects to monitor their own actions and their the sample there was a specific operational criteria that own desires through traditional principles of promoting would allow the participants to feel assisted, to commu- the dialogue. For researchers, the reflexive dialogue can nicate in an effective way, to acknowledge and recognize be established within themselves and their subjective each other and, finally, to build the particular dynamics preferences as well as with the collective experience, of the group identity [13]. The sample size should also pursuing an attitude of continuous anxiety about one’s allow the coordinators to feel comfortable during the own actions, the preconceptions involved in each deci- process of assessing the communication of the group sion, and the methods used to filter, to control, to define, members. We also considered the potential loss of par- and to guide the social processes [16]. ticipants during the programmed 8 (eight) sessions, by Written informed consent was obtained from all spontaneous quitting or personal impediments. The participants. In order to maintain confidentiality, each eight encounters treated specific topics chosen by the in- participant was identified by the name of an Ancient dividuals participating in the group. This closed group is Greek city. Despite its geographical distance, this in the category of the denominated SHPG – Strategic country has a particular relevance in the etiology of Health Promotion Group. two central words that guide this research experience: The encounters took place between May and August diabetes (διαβαίνειν)and autonomy (ατόνομος). In 2017, with a specific methodology oriented to capture this study, the participants’ names are: Corfu, Fira, the life stories and multiple experiences of the subjects. Mykonos, Meteora, Veria, Atenas, Heraklion, Creta, Silva et al. BMC Public Health (2018) 18:699 Page 4 of 8 Rhodes, Castória, Micenas, Patras, Delfos, Zakynthos, Other speeches also drew attention to the recognition Epidauros and Volos. of hereditary factors in the diagnosis of the illness. How- ever, there is again concern and fear about the prognosis, Results when they compared their situation to that of people All 16 (sixteen) participants live with Type 2 Diabetes they had heard of in their life experiences: Mellitus, of whom 12 (twelve) are females and 4 (four) “I come from a diabetic family, my brothers and sisters are males aged from 57 to 90 years. have it. One of them is already dead”. (Meteora). Based on the perspective I “Recognizing diabetes” and “I’m also from a diabetic family. Most of my uncles on the objectives of this study, the results were orga- had problems (with diabetes) and died”. (Véria). nized into three categories discussed below, namely: the “My brother died of diabetes, he lost both legs, so I’m impact of the diagnosis; the denial of the illness and the afraid because I remember this when my diabetes (glu- acceptance of the illness. cose) gets too high...” (Volos). In this category, it was observed that the dialogues in The impact of the diagnosis a group caused important reflections in the way each This category shows how subjects reacted to the dis- participant faced the diagnosis, which can influence the covery of their chronic condition, which was mostly different stages of acceptance and denial of the chronic unexpected. The impact of the news caused several condition and in its ways of carrying out self-care as well reactions, a mix of emotions and feelings, such as as in dealing with institutional health care. despair, preoccupation, unrest and even panic, when the information was disclosed by means of a diagnos- tic test or a health professional: The denial of the illness “I discovered it at age 42... I was a bit overweight. The We imaginethatthe waytodeal with thediagnosis andthe doctor said: you are diabetic! What a shock! I almost new ways of carrying on with life directly influences the ac- died!” (Fira). ceptance or denial of the illness. This category is composed “I panicked. I thought I was never going to be normal by the dialogues concerning the non-acceptance of the anymore in my life. I panicked! Do you know what panic chronic condition attributed, mainly, to the limitations of is?” (Zankythos). daily life implied by having to live with a long-term illness. As diabetes sometimes has a silent character, in some Denial is present in the reactions of dissatisfaction cases it can be discovered with important previously in- exposed by Castória. stalled complications, and this can lead to the feeling of “You feel unhappy by having diabetes. There are days anger and revolt at the moment of diagnosis, as shown that I meditate a lot, there are times when I am alone, in the speech of Patras. sometimes I cry, then I try to visit someone; I want to get “At first I felt anger, I was angry at the time, because that thought out of my head. I cry because of diabetes when I discovered I was already harmed, I already had and because of the difficulties too”. (Castória). my vision affected, then at the time I felt revolted, angry”. For Veria, the dissatisfaction, revolt and non-acceptance (Patras). comes from the lack of the indicators control of the illness For Heraklion, however, the reaction to the chronic caused by many factors: condition was not immediate, perhaps due to the “I was diagnosed four years ago ... but I cannot control non-correlation of the diagnosis of diabetes with a it, I could never control it, I take insulin, but I cannot chronic condition: control it ... I thought it was a simple thing. I thought I “At that time (the diagnosis) I confess that I did not feel was going to control it”. (Veria). anything... only with time I started to feel the difficulties Other participants, in the dialogue in a large group, and started to get more... I wouldn’t say unhappy, but end up expressing the dissatisfaction with the illness worried!” (Heraklion). resulting from abrupt changes in lifestyle, not always Still on the impact of the diagnosis, we also detected a tolerated, especially when related to food: change of attitude of some participants in relation to the “It’s very annoying to live with diabetes, you cannot eat recognition of diabetes. Some expressed certain predict- everything, and you have to be on a diet”. (Heraklion). ability in relation to the illness, especially because of her- “I got like this because it is an illness that forbids us to edity from the histories of complications and deaths eat everything, I miss it, especially the sweet stuff”. shared between generations, as we can see below: (Epidauros). “I did not suspect (of the illness) but I had doubts, On the other hand, the participants also take the because of the family, my father died at 45, most of group to reflect on stigma towards the illness as well as Dad’s family all died of diabetes... everything is on the fact that seeking to adapt to the illness, doesn’t hereditary”. (Mykonos). always mean accepting it: Silva et al. BMC Public Health (2018) 18:699 Page 5 of 8 “I feel sad because of this diabetes, I tell everyone it emotion and diabetes, where one directly influences the was a nickname they gave me, I do not say that I am other [17]. It is also known that the emotional impact diabetic, it was a nickname they gave me”. (Micenas). generated by the diagnosis and its entire burden triggers “No one gets rid of this. Diabetes is forever. But, I con- the complications of diabetes mellitus [17]. trol it and I live”. (Volos). In this same perspective, some studies have pointed Thus, living with diabetes is complex and out a greater vulnerability of people living with chronic non-acceptance can come from multiple factors, all of conditions to the emotional instabilities that can vary which permeate the meanings people give to their life- from mild to serious problems, such as severe depres- style habits. sion, and that would be associated with the therapeutic rigour of the illness [18]. Acceptance of the illness It is important to understand that diabetes has a Acceptance of the illness, the last category analyzed, negative impact on the quality of life of the subjects, may be directly related to the control of the illness and especially due to the emotional changes, the limiting strategies for overcoming and living with the new situation, and the process of (non-)acceptance of the ill- chronic condition. It is evident that there is an under- ness. A study carried out in Brazil that measured the standing of the importance of self-care for their quality of life of patients, identified that among the well-being and on their health-illness process: subjects studied, physical and emotional factors were the “I take the medicine on time, I do not eat food I’m not most determinant for their quality of life, and the emo- supposed to eat, we cannot eat them! We need to adapt”. tional impact occupied the second place, corresponding (Corfu). to a value of 77.2%. The authors explained that diabetes “You have to try to do those physical activities that are mellitus interferes in the patients’ quality of life in a good for diabetes: you have to try to walk, exercise, swim, negative way [19]. it’s extremely good for us”. (Rhodes). Stillon the diagnosisofDiabetesMellitus, some Patras’s speech also contributes to the understanding authors [17] mention that the diagnosis is made that by controlling the illness, acceptance becomes more through routine tests or through the suspicion of feasible, as an intrinsic relationship between symptoms of the illness. They also affirm that, as in accepting-controlling and controlling-accepting. the present research, the disclosure and confirmation “Diabetes is an illness that we will live with and we of the diagnosis generates many feelings before the have to try to be happy... under control! We need to try new chronic condition. to control every day more... food, physical activity, medi- In the context of acceptance, denial, and the impact of cine, taking them correctly, always up to date with the diagnosis, we can describe the stages of mourning ex- medication”. (Patras). plained by Elisabeth Kubler-Ross [20] in her book “On In this category, reflexivity is also raised about the Death and Dying”: denial, anger, bargaining, depression exchange of experiences of the group. The dialogues and acceptance. Some studies [21, 22] have shown that with the participants could facilitate the acceptance of the impact of the diagnosis of a chronic illness resembles the chronic condition, as it’s seen in the speech of the stages of mourning, as it is always very difficult and Epidauros: affects the self-image and self-esteem. People that re- “Today I think I’m more relaxed, I think I’mmore ceive the diagnosis, just as mourning, go through several optimistic, to know what diabetes is, how we should stages where feelings can go through several phases. The live together andwhattodotohavebetter health”. stages of mourning should be used in a flexible way and (Epidauros). help a comprehensive understanding of the subjects di- Accepting a chronic illness is a gradual process where agnosed with a chronic illness [21]. the subjects first become aware of their situation, by this Fear was a common reaction in the dialogues of the means, facilitating their adaptation. This contributes to a participants of this study, especially when they reported better quality of life and decreases the risk of complica- traumatic family experiences with complications and tions related to the illness. deaths caused by diabetes. Some studies pointed out that sometimes the awakening to the illness can cause bad Discussion feelings when, for example, the patients are aware of The discourses of the participants regarding the impact histories with traumatic prognoses such as death or am- of the diagnosis made it possible to perceive that a mix- putations, and because of this, they tend to fear the ture of feelings emerge. They include preoccupation, repetition of those events with risk of tragic ends, such panic, and even anger and consequently denial of the as those observed in relatives or close friends, especially condition. This was also observed in another study that arising from the fear of chronic complications of the identified the existence of a relationship between illness [23, 24]. Silva et al. BMC Public Health (2018) 18:699 Page 6 of 8 The acceptance of a chronic condition is a result of a participation in the care of the subjects, improving their transformation that takes place gradually in the behavior life quality [26–28]. of the subjects, moving in the direction of a greater The group experience can also potentialize changes in awareness and adaptation to the illness. These aspects lifestyle. However, changes in life habits are complex; it directly contribute to their responsibility towards their is a difficult and slow process, particularly with regard to overall health state. When patients accept their condi- food. Eating habits are related to cultural, economic and tion, they find an inner peace, thus favoring acceptance social factors [25]. We identified in the speeches of the and better adaptation to their chronic condition [8]. participants that food is one of the most difficult factors However, the difficulty of accepting a chronic condi- to control the illness. Other studies [19, 29] have stated tion brings subjects to a particular dialectic dynamic in that the negative impact on the quality of life is influ- their lives. Accepting the chronic condition requires that enced by the new lifestyle, which should be adopted, and the person recognizes and learns somehow to live with especially because people with diabetes need more food the discomfort and pain generated by the restrictions restriction, which has a greater impact on therapeutic imposed by the new habits. It is necessary to reflect on participation and health care. Thus, food re-education is alienated acceptance or adaptation to new habits, always one of the greatest challenges faced by some people with re-evaluating the health practices so as not to stigmatize diabetes mellitus, where negative feelings related to food subjects, because words such as “patients, diabetic per- control occur, such as the difficulty to meet the goals set son, carrier” reduce the subjects to objects and as they by the health team and consequent frustration [18]. are submitted to passivity. Accepting treatment, in a Recognition of diabetes, in its broadest sense, emerges more minimalist conception, “implies recognizing one- not only through the knowledge of clinical diagnosis, self as having a significant limitation, determined by a but also through the repositioning of the subjects in chronic illness. It implies, therefore, a loss of autonomy” their ways of living and taking care of health. It goes [25]. The sense of being stigmatized was exalted in this through reflexivity, looking and re-signifying the percep- study. In this sense, autonomy is fundamental even to tion of themselves and their social network, identifying favor therapeutic participation into the new ways of their beliefs, values and establishing a relationship of dealing with life. mutual support in the search for autonomy. It is known During the dialogues with the group, we also noticed that recognizing oneself in the condition of living with a how the impact of the diagnosis and new ways of living chronic illness is fundamental for the good performance influence on the emotional state of those subjects. The of self-care actions and, consequently, for their participa- fact of having to live with a chronic illness causes tion on treatments [7]. It is also fundamental to guaran- discomfort and dissatisfaction because the condition tee the control of their own lives, so that the person may requires a complex and long-term treatment which im- be able to deal with the limitations that are imposed by pacts on the whole social network in which the subject the diabetes mellitus, with co-responsibility as a funda- is inserted. This demonstrates the importance of the ex- mental aspect for the success of the treatment and for change of experiences in the pursuit for greater the quality of life [30]. Participation through the autonomy. exchange of experiences in the SHPM was able to influ- It is known that exchanging experiences also influ- ence this context in a positive way. ences on a better acceptance of chronic conditions, Providing autonomy to the subjects means to con- because when it is possible to live with the illness, sider them as owners of conceptions and experiences there is time for a greater acquisition of knowledge, that directly influence their relationship with both generating greater ease in the management of the health professionals and their own health-illness treatment [18]. Thus the experience acquired process. Thus, the experience of illness and self-care individually is strengthened when transmitted to is taken into account [21, 31]. others through group dialogues that address indivi- Furthermore, it is important to work and encourage dual experiences in search of collective pacts. the personal autonomy of subjects who live with dia- Therapeutic participation is a conditional factor for betes because they are full of experiences that influence improving the quality of life of subjects with chronic dis- their ways of living with the chronic condition. Partici- eases. Studies have indicated that the therapeutic success patory studies are still insufficiently explored in the in patients with diabetes mellitus is linked to the extent context of groups of people living with diabetes from the to which the subjects act and commit themselves for perspective of autonomy. Moreover, further studies are their well-being, as for example by monitoring their needed to deepen the theme and to make it possible the glycemic status, changing their life habits and making construction of new propositions. It is also necessary to correct use of medications. Counseling about the illness apply the SHPG in multi-centric studies to improve the and its treatment is very important for therapeutic analysis related to the subject’s mutual sharing of illness Silva et al. BMC Public Health (2018) 18:699 Page 7 of 8 experiences and narratives in therapeutic participation beings, therefore grounded on ethical principles, but can be made available on the basis of reasonable request to the corresponding author. and health care, especially on the stages of acceptance and denial of the illness. Authors’ contributions JAS, ECFS and CCMC participated in the drafting, design, analysis and interpretation of the results, writing and approval of the version to be Conclusions published. HSB, EELCF and AGEB participated in data interpretation, writing This study allowed us to observe that the emotional and critical review. AGEB participated in translation of the article. The final aspects involved in the diagnosis of diabetes mellitus can version of this article has been read and approved by all the authors. influence whether or not the illness is accepted. The way Ethics approval and consent to participate in which the subjects recognize diabetes and re-evaluate This research is a part of a larger study entitled “Health Promotion Strategies: their habits influence their participation into treatment, The Challenge of Autonomy for People Living with diabetes mellitus”. Since because this is a chronic condition in which changes are it was a research involving human beings, the study followed the criteria and requirements established by the Resolution 466 of December 12, 2012, often marked by their duration and by the risk they offer. of the National Health Council, obeying the recommendations of the The denial of the chronic condition results in a greater Research Ethics Committee (REC) of the Onofre Lopes University Hospital difficulty in developing self-care, influencing the lack of (HUOL) of the Federal University of Rio Grande do Norte (UFRN) under Opinion n° 1.868.237 CAAE n° 61,947,616.4.0000.5292. The respondents were participation into the different approaches of treatment. also given the opportunity to review and revise the transcripts of their Denial of the illness seems to be more related to the dif- speeches. Informed consent written was obtained from all participants. The ficulties in controlling the illness resulting from changes ethical approval opinion is available on Brazil Platform http:// plataformabrasil.saude.gov.br/visao/publico/indexPublico.jsf in lifestyle. It is a difficult process for the subjects and re- quires a slow adaptation because an appropriate treatment Competing interests needs the understanding of the implications of such The authors declare that they have no competing interests. changes in the subjects’ lives. With regard to the acceptance of the chronic condition, Publisher’sNote we observed that it does not correspond to a static phase, Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. but to a process of transformation that happens gradually. The subjects need to have a greater understanding about Received: 11 December 2017 Accepted: 30 May 2018 their personal recognition and their ways of dealing with health. 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BMC Public HealthSpringer Journals

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