Living with diabetes: difficulties experienced in coping with, and managing, the disease
Aliny de Lima SantosI; Gilvan Ferreira FelipeII; Saiwori Silva de Jesus Bezerra dos AnjosIII; Leilane Barbosa de SousaIV; Sonia Silva MarconV
I Nurse, PhD in Nursing. State University of Maringá. Brazil. E-mail:
II Nurse, Master in Nursing. University for International Integration of the Afro-Brazilian Lusophony. Brazil. E-mail: email@example.com
III Nurse, PhD in nursing. State University of Ceará. Brazil. E-mail: firstname.lastname@example.org
IV Nurse, PhD in Nursing, University for International Integration of the Afro-Brazilian Lusophony. Brazil. E-mail: email@example.com
V Nurse. PhD in Nursing. State University of Maringá. Brazil. E-mail: firstname.lastname@example.org
Objective: to learn, from the perspective of a person with type 2 diabetes, what it is like to live with the disease. Method: in this descriptive, qualitative study, 12 focus groups were carried out, with 26 people participating. All meetings were recorded, transcribed and submitted to content analysis. Results: two thematic units emerged: Diagnosis or sentence? Recognizing hidden difficulties in living with diabetes, in which it was perceived that the disease is sometimes associated with negative feelings, such as fear of death; and The experience of controlling the disease and changing habits, which reveals difficulties involved in living with the disease, especially as regards the need for changes in diet. Conclusion: the difficulties in living with diabetes relate to how individuals perceive the disease in their lives and to how they cope with it, and generally impair control of the disease and prevention of complications.
Descriptors: Diabetes mellitus; self-care; health education; attitude to health.
Non-communicable chronic diseases (NCDs) are related to reduction of quality of life because they can limit work and leisure activities, and also to increase of premature mortality. They can also be an economic burden for families, communities and society as a whole1.
Diabetes mellitus type 2 (DM2), currently considered a worldwide epidemic, is the most common form of the disease, accounting for about 90% of the cases. Its emergence is closely related to inadequate lifestyle habits that impairs the action and production of insulin or predisposes to insulin resistance 2. It is a health condition with high morbidity and mortality rates, currently affecting more than 20% of adults between 65 and 76 years of age3.
In Brazil, the number of people with DM2 will increase from 4.5 million in 2000 to 11.3 million in 2030, thus raking eighth among the countries with the greatest number of people with the disease4. Besides that, it is not uncommon for many people to be diagnosed only after the manifestation of complications of the disease5.
This diagnosis, in turn, demands the need for changes in habits, constant visits to health services and, often, daily use of antidiabetic drugs. Adaptation to these changes is fundamental, as well as the good coexistence with them in view of the high prevalence of complications of diabetes including microvascular problems. The latter are present in 53.8% of the cases, having as main determining factors the number of daily meals, absence of physical activity and smoking6.
Thus, the objective of this study was to understand, from the perspective of people with type 2 diabetes mellitus, the experience of living with the disease.
The ways of thinking about diabetes involve meanings that do not obey a rigid, unique or definitive standard. Treatment adherence and disease management represent a complex practice that generates conflicts of the individual with himself and with the environment that surrounds him 7. This is because, several factors positively or negatively influence treatment adherence, especially personal, behavioral and socioeconomic factors, as well as the non-acceptance of the disease and of the necessary changes8.
Nevertheless, the efficient management of the disease can be facilitated through educational activities. This kind of education seeks to teach patients how to live with the disease, training them and the people who live with them. Added to this is the idea that it is essential to have access to information and guidance that allows the increase of knowledge, skills and attitudes for self-care in a conscious and autonomous way9.
Thus, the search for understanding how to adapt and deal with the changes imposed by the disease and its treatment is necessary for the improvement of the care offered to these people, favoring the control of the disease and providing a closer approximation between professional practice and the real needs of those who receive care10,11.
The diagnosis of a disease such as diabetes brings with it the need to adapt to a routine marked by periodic consultations and tests, changes in life habits, especially food, and in many cases, the daily use of oral anti-diabetic agents or insulin12,13. On the other hand, when this adaptation does not happen, or when it occurs only partially, this leads to a conflicting dealing with the disease and, therefore, an inadequate coping and control14, often culminating in the appearance of complications that reduce the individual's ability to perform daily activities and loss of well-being15.
Descriptive study with a qualitative nature developed at the Association of Diabetic Persons of Maringá (ADPM). The study involved workshops were in the ADPM with the participations of 26 type 2 DM patients, older than 18 years, of both sexes, enrolled in the association. The dissemination of the meetings took place through posters exhibited in the facilities of the association and telephone contacts with the people registered there. Adherence occurred on a voluntary basis and it was up to the participant to attend or not attend all meetings, without this being a reason for exclusion from the study.
The meetings consisted in short workshops for initial sensitization through group interaction techniques and use of paper, colored pencils, crayons, cardboard, magazines, gouache paint, among others, to promote relaxation and socialization, besides giving vent to the themes proposed for each meeting. It should be noted that the themes were defined by the group itself; the topic to be discussed in the next meeting was determined at each encounter. From then on, meetings were held to offer the participants and researchers the opportunity to reflect and discuss the topics that were in the selected list. During the workshops, the researchers acted as mediators of the discussions, organizing and coordinating them, in order to allow and encourage the manifestation and active participation of all.
A total of 12 weekly meetings were held, with an average duration of 90 minutes each. With the permission of the participants, the meetings were fully recorded on an MP3 player and transcribed immediately after the workshops were finished.
Data processing began with a verbatim transcription of the meetings and rapid and then detailed readings of all transcribed content to identify limiting situations of living with diabetes and the generating themes, in order to aggregate and transform data into understanding nuclei, according to the affinity of themes/subjects16. Finally, there was a deepening of the readings and identification of the following thematic units: Diagnosis or Sentence? Recognizing the Subtle Difficulties of Living with Diabetes , and Experiencing Disease Control and Changing Habits. In the presentation of the results the colloquial speech of the participants was preserved and only some slangs were corrected to make the reading flow and become pleasant.
The development of the study followed the ethical precepts of Resolution nº 466/12 of the National Health Council of Brazil; and the project was appreciated and approved by the Standing Committee on Ethics in Research with Human Beings of the State University of Maringá. Participants were identified with the letter P, followed by a sequence number, the letters M and F to indicate the male and female sex, respectively, and age (ex: P1F43).
RESULTS AND DISCUSSION
The age of the 26 participants ranged from 38 to 64 years and most of them (17) were male. The time of diagnosis of the disease varied from four months to 19 years and the pharmacological treatment used by 19 participants was oral anti-diabetic drugs only; the others used oral anti-diabetic drug associated with insulin.
As to dealing with the disease, regardless the efforts of health professionals, the patients themselves are the ones who judge and decide how self-care will take place.
Thus, the conception of health and the way each person faces the disease are based on their personal experiences, and these, in turn, have a direct relationship with the beliefs, culture and values acquired throughout life10,13. Therefore, perceptions about a disease are not the same for different people; each individual has unique manifestations and reactions.
The process of analyzing the empirical material subsidized the construction of two thematic units: Diagnosis or Sentence? Recognizing the Subtle Difficulties of Living with Diabetes, and Experiencing Disease Control and Changing Habits.
Diagnosis or Sentence? Recognizing Difficulties of Living with Diabetes
Living with diabetes requires adaptation to lifestyle and incorporation of practices involving dietary changes, glycemic control, frequent physical activity, maintenance of blood pressure levels, and continuous follow-up of a multiprofessional health team17.
The reports showed that the disease was treated as something to be ignored or even hidden from the family, as a strategy to not be watched over to adhere to the changes necessary for disease control, or as a way to control the anxiety caused by fear of the consequences of the disease to their lives.
I'd rather not think I have this disease; I live my life normally. I think if I put on the head that I have this disease, I will get worse, so I pretend it doesn't even exist (P4M54) .
I never told my family that I have diabetes. If I do, they will complain about things I like to eat. I do not even like to remember, and I keep my normal life (P8F48) .
Hiding or ignoring the disease was a practice adopted among some interviewees, becoming a way to escape reality, that is, the disease and its restrictions. This attitude makes it extremely difficult for healthcare professionals to convince people who do not even give a meaning to the disease to adopt self-care measures18.
Some people showed that they associate the disease with death, regardless of whether or not they adhere to treatment. This conception was associated, in some cases, with failure to follow food restrictions:
I'm going to die anyway. If I die, I'm going to die happy, having eaten everything I wanted (P4M54).
I was taking the pills very carefully, and even insulin, and the diabetes did not go down; then I said: I think I'll end up dying anyway. So if I feel like eating sweets, I go and eat sweets. If it is to die, it will be out of the sudden (P5M63)
The fact that some people associate the disease with death, regardless of whether they take care of themselves or not, is also a limiting factor for health professionals. They need to make a great effort to raise awareness of the benefits that a good adherence to treatment will bring in terms of quality of life12,15.
Among the changes required by the diagnosis of the disease is the change of eating habits. This was cited by some as the greatest difficulty experienced, especially due to the need to be deprived from eating food considered pleasurable.
It is not easy to leave so many years eating the things that we like, and only because of a test, because of a doctor, even without feeling anything serious, we look at that lasagna, that sweet milk, but we can't eat it (P21M62).
I used to eat a can of condensed milk a day, and I miss that, you have no idea. It is hard, you know? (P3M66).
The difficulty of making dietary changes comes mainly from the fact that they involve restrictions that diminish the pleasure of eating and drinking and, therefore, the freedom and autonomy to eat in the desired way 19.
Therapeutic adherence is a complex phenomenon; it means more than complying with certain prescriptions. In the adherence process, the patient needs autonomy to conform to the prescriptions given by health professionals, so that the patient actively participates in his self-care13.
However, being aware of the foods considered more appropriate for glycemic control did not prevent some participants from consuming inadequate food, even despite the feeling of remorse:
I know everything that I can eat and what I cannot, but instead of eating brown rice I eat gnocchi, noodles. I say: Just today I'm going to eat this! Then the next day I feel like eating again. I try to stop eating things, but when the desire comes, I don't care. Then I regret it, and I even cry (P8M64).
For those who live with diabetes, knowledge about the disease, its complications and means to control and treat it are essential. Corroborating the findings, it has been noted that knowledge is not always directly associated with a good acceptance and adequate control of the disease15,20. Some participants in this study, for example, showed that despite having a good knowledge about the disease and the necessary care for its control and treatment, they are unable to make changes in lifestyle. Furthermore, while some consider adaptation to disease to be very complex, others adapt very naturally.
Thus, health professionals need to be aware that in the presence of a chronic condition such as diabetes, fluctuations in adherence to treatment are expected. They need to be sensitive to the limits and difficulties, as well as understand that diabetes patients see treatment, to some extent, as the restriction of their freedom of choice over how to lead a life 21.
Thus, the patient's motivation and attitudes towards the treatment are not stable and crystallized, but are rather subject to predisposition to adopting self-care actions, influenced by cognitive, motivational and emotional components; self-care, however, can be stimulated by health professionals22.
This self-care can also be motivated and stimulated by the family. However, when there is no concern of the family, this can rather motivate higher food consumption:
I will not stop eating what I want! My husband calls me an ugly fat, my son feels ashamed of me for being fat. My only pleasure is to eat. Do you think I will stop eating what I like just because a doctor or nutritionist is telling me to do it? Of course not! (P13F60).
Family involvement in care, as part of the support network, helps the diabetes patient better accept the new condition and, therefore, have a more confident and efficient attitude towards self-care23.
Experiencing Disease Control and Changing Habits
With respect to the aspects of living with the disease, some participants revealed that the fact that they use insulin allows them to make food extravagances.
As I use it right (insulin), along with the pills, I do not even care. I eat what I want, and then I just take the medicine (P3M66).
When I ate sweets, and I took that insulin, I went to do the exam, and the diabetes began to drop. So then I kept taking insulin and eating sweets (P4M54).
The practice of continuing to consume sweets and then trying to compensate with the use of insulin represents an escape from the "vigilance" exercised by themselves and by the people of their conviviality, besides being a way to regain autonomy as to the choice of food, taking insulin as a helper or ally.
It is known that the more changes are required in the routine of the individuals, the more difficult it will be for them to adhere; also, less complications and manifestations resulting from the disease lead to lower adherence7. Realizing that, by eating improperly and using insulin after that means that the individuals does not feel concrete manifestations of elevated blood glucose, this becomes a subsidy to better cope with the disease and its dietary restrictions.
Nonetheless, some people demonstrated a good relationship with the disease, marked especially by acceptance of the limitations imposed by the disease on their lives.
You can lead a normal life, but you have to know what you can and cannot do. There at home every weekend they make cake, but I do not eat because I know I can't. Sometimes feel a strong desire to eat, I take a little piece in the spoon, and I just to try it. I want to live, and if it is with diabetes that I have to live, I had to learn to live with it (P8M64).
I've had diabetes for a long time. I go out, I travel and I walk everywhere. So, diabetes did not kill me. It's like a lover, that we try to get rid of, but she will not leave (laughs) (P23M83).
In the speeches, it was observed that some participants reported a good attitude toward the disease, characterized by the desire to live well despite of the disease and by the acknowledgement that it is possible to adapt to changes. In this sense, changes in eating habits are perceived by some participants as easily adhered to. When consciously adopted due to their positive effect on health, adequate food may even become pleasurable.
Despite the difficulties involved in living with diabetes, it is also through living with the disease that positive aspects can be experienced, such as better food choices6. This change, besides favoring disease control, ultimately improves the quality of life and health as a whole by striking a balance between the need to promote change and the effective maintenance of the disease10.
Therefore, the way people perceive their condition influences the overall control of their health-disease state11. In this sense, health promotion activities developed among diabetes patients, based on necessary and relevant information and guidance, have become even more important to give them greater autonomy and, consequently, to help them understand that they need to adopt behavioral changes to better manage the disease10.
Nevertheless, another important aspect mentioned by some participants was dissatisfaction with the attitude of health professionals and how they act, giving the guidelines in authoritarian manner, ignoring the individual meanings involved in living with the disease for each patient.
In some speeches, health professionals were described as people who monitor glycemic values without, however, listening to the needs and difficulties of the patients. Thus, the recommended treatment often bears little relation to the reality experienced by people with diabetes.
Before that, he (the doctor) would tell me to take a medicine, and he would say: within thirty or forty days you will return here. Then I would spend two days without eating the wrong things, I would get there and it would be okay. I would do this just to avoid him preaching (P8M64).
I do everything right and when I get there (the Basic Health Unit) and it is high, he (doctor) says that I did not do what he told me to do, he almost calls me a liar. I measure my diabetes, I control my food, and he wants to know more than I know (P6M71).
The speeches indicated that although diabetes patients are followed up by health professionals, it is up to the patients to follow exactly what was prescribed by them, or they can be considered disobedient. This leads people to wish to deceive the doctors by changing food only on the eve of consultations or testing, in an attempt to mask glycemic rates and avoid being disapproved and exhorted. Attitudes such as these need to be reflected by health professionals because they indicate an absence of bond and trust between patients and professionals13.
It is not uncommon for professionals dealing with chronic patients to recommend treatments or care measures as right or wrong without acknowledging that patients develop their own means to keep disease under control20. This acknowledgement is important for an approximation between the professionals and patients. By doing so, patients will have trust and freedom to report how they actually do their treatment. The absence of this relation with the professionals can directly affect how the individuals will perform the care5,18.
Thus, the statements of the participants made it clear that the process of experiencing diabetes, thinking about it and dealing with it, involves an ideative dimension - what the disease represents for the individual -, and a concrete dimension - the experience lived by the patient5. These dimensions are not stable; they are integrated, constantly changing, influencing each other and updated according to everyday circumstances5.
On the other hand, the process that determines this coming and going of these dimensions is mediated by the course of the disease, as symptoms and responses to the treatments change, or by beliefs and ideas associated with the disease and by the socio-cultural environment expressed in the daily life of individuals13.
The study found that the difficulties involved in living with diabetes range from the re-adaptation to a new diet routine and life habits, to the establishment of social relationships, with family and with health professionals who assist them.
It was also observed that there is no linearity in the way of living with diabetes, because what the individuals knows about the disease, and the meaning the disease has in their lives and the way in which they live, determine the choices related to the disease and its control. It was also pointed out that these choices are not always those indicated by health professionals, but are those that people consider appropriate to their lives and that according to their perceptions may contribute in some way to make them healthier. Health professionals must recognize, respect and adapt the provision of care to the particularities and specificities of the patients.
In this context, the recommendations and guidelines need to emerge from a two-way process characterized by the exchange of knowledge and experience in which the patient has an active role in dialogue and decision making so that the measures recommended be adequate to their living conditions, beliefs and preferences.
It should be emphasized that, despite the limitations of a small number of participants and the short duration of the research on such a broad topic, the study developed through group workshops was very useful. The findings were not simply collected, but were constructed together, with the full participation of the subjects.
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