Introduction
Diabetes is among metabolic and multifactorial disorders characterized by high blood sugar or hyperglycemia, which is due to a disruption in insulin secretion or function, or both [
1]. Diabetes is called a “dormant epidemic” and is a cause of the death of about 1.5 million people in the world [
2]. According to statistics, the number of diabetic patients in 2000 was 171 m, and it is estimated to reach 578 m in 2030 from 463 m in 2019 [
3]. In Iran, the national outbreak of 11.4% means that there are as many as 4 million mature diabetic patients; this figure is estimated to reach 9.2 million in 2030 [
4]. International expenses of the condition are reckoned as high as 1.3 billion dollars including direct care and indirect expenses due to inability, disability and early deaths [
5]. One of the most important factors in controlling this disease is the participation of patients in the treatment of the disease. Therefore, diabetic patients and their families need to learn about practices such as monitoring blood sugar, selecting a proper diet and increasing physical activities [
6]. To this end, a simple concept called “empowerment in self-care” is posed, which means enhancing self-determination and self-adjustment [
7]. Patients are encouraged to cooperate through sharing information and interaction in order to have maximum participation in their own treatment [
7]. Teaching self-care behavior is effective in improving the quality of life and reducing expenses [
7]. Although numerous studies have confirmed the effectiveness of self-care schemes, there are high levels of attrition in patients’ participation [
8]. Those who abandon self-care plans to control diabetes suffer from worse health consequences [
9]. Currently, there are little and discrepant information about factors related to non-participation in self-care schemes in diabetic patients [
9]. It has been clarified that success or failure in any training scheme depends on individuals’ fundamental beliefs and attitudes [
10]. Most studies conducted on self-care schemes assessed the effects of training programs on enabling and behavior change in diabetic patients [
11‐
16]; few studies have been examined the effective factors in patients’ non-participation in self-care schemes from the point of view of those who have abandoned self-care schemes [
10,
17]. However, both previous studies were conducted in developed countries (Canada and Germany) [
10,
17]. This is while the situation for developing countries may be completely different. As far as we know, no study has been conducted on the reasons for not participating in self-care programs in Iran. Nevertheless, individuals themselves are a valuable source in understanding the disuse of health services, a fact usually ignored in studies. Regarding the money and time spent in planning and structuring self-care training schemes, discovering the reason why diabetic patients do not complete their self-care training program and abandon it halfway is warranted in order to achieve success in self-care schemes. Thus, this study seeks to investigate the reasons for diabetic patients’ non-participation in self-care training schemes.
Methods
Design
This was a qualitative study that aimed to assess obstacles to diabetic patients’ attending in self-care training schemes.
Theoretical orientation
In the qualitative study, we seek deeper and more accurate information about the behavior of diabetic patients that could not be identified using a quantitative study. A qualitative approach was designated for this study because this method provides a deep understanding of the participant under investigation and practically was the only approach responding to the research questions as it is generally believed that the choice of the research method is determined by the research questions [
18].
Context
The prevalence of DM in Iranian adults aged 25–70 years was 11.9% in 2011, and it is predicted that in the year 2030 there will be about 9.2 million people with diabetes in Iran [
4]. In 2015, 9309 deaths due to diabetes were registered in Iran and age standardized mortality rate associated with diabetes in Iran is increased from 8.7 in 2000 to 11.3 in 2015 [
19]. There are three strategies to control diabetes in Iran. Reducing blood glucose to the recommended targets through lifestyle and pharmacotherapy; assessment and reduction of related cardiometabolic risk factors (e.g. overweight/obesity, hypertension, and dyslipidemia); and scheduled regular screening for micro- and macrovascular complications with prompt management of incident cases [
20].
Interventions: self-care training program
A self-care training program for diabetic patients was implemented in the Mashhad city, northeast Iran, between 1 April to 1 July 2019. Self-care training courses for diabetic patients in health centers lasted 3 months and involved 12 sessions. Self-care training program covered several main topics such as diet, physical activity, blood sugar monitoring and foot care.
Participants
Among patients who did not participate in the training program, 30 individuals were purposefully selected for this study. Non-participation in the training program was defined as attendance at less than half of the sessions. The mean age of the participants in this study was 59.4 ± 9.39 years. The majority of participants were female (66.7%), married (80%), employment (86.7%), and with university education (60%). Socio-demographic characteristics are shown in Table
1.
Table 1
Socio-demographic characteristics of participants
Sex |
Male | 10 (33.3%) |
Female | 20 (66.7%) |
Marital status |
Married | 24 (80%) |
Single | 6 (20%) |
Education level |
University education | 18 (60%) |
Non-university education | 12 (40%) |
Employment status |
Employment | 26 (86.7%) |
Un-employment | 4 (13.3%) |
Age |
Mean ± SD |
59.4 ± 9.39 |
Data collection
The required data were collected through in-depth semi-structured interviews. Interviews were conducted by the corresponding author (JJN), a faculty member of Mashhad University of Medical Sciences (MUMS) with experience in conducting qualitative interviews. Every interview began with a general question, “What are the main reasons for non-participation in the self-care training schemes?”. Then, the interviewees were asked to express their opinions, experiences, and views to achieve further information. Also, we used queries like “can you explain further?” or “what do you mean exactly by saying that” or “could you give us more examples?” The interviews continued until data saturation; that is, the new data entered into the study did not create new theme or change the existing themes. The data was saturated with 30 interviews each lasting 35 min on average. All interviews were conducted face to face and physical mode.
Data analysis
Data analysis was started simultaneously with data collection. Two authors (FSH, JJN) independently used content analysis with MAXQDA software to analyze the data. Content analysis method consists of five steps including: familiarization, inducing themes, coding, elaboration, and interpretation and checking. All interviews were recorded and transcribed verbatim. The texts were reviewed several times for obtaining a general overview. Then, the texts were studied line by line in order to provide a comprehensive view of each line. At first, data coded was done by two researchers which indicates analysis units. Analysis units are the answers for questions. Semantic units were extracted from the main concepts of analysis units and each of them was provided with a specific code. The codes were compared with each other and an index of main and subsidiary codes was made. In coding of the second level, main and subsidiary codes were recited and those codes with similar meanings were categorized. In case of any dissimilarity, after discussion and reaching an agreement, the final code was determined.
Trustworthiness
During the study, four factors of dependability, credibility, confirmability, and transferability which have been provided by Lincoln and Guba [
21], were used to ensure the trustworthiness of data, which is the equivalent of validity and reliability in the quantitative studies. These factors are the standards of scientific rigor in qualitative studies. To ensure the credibility of data, member checking method was used. For this purpose, the interview transcripts and the drafted themes were given to the related participants to review the results and verify them. Also, we performed a sampling with a maximum variation of age, sex, and socio-economic factors. In order to ensure transferability, we provided necessary explanation regarding the study context, data collection and analysis. Also, we sought the opinion of three diabetic patients with similar characteristics to the participants who did not participate in the study to judge the similarity of the results to their own experiences. To approve the dependability of the results, the data were examined by four prominent researchers in this field who were not involved in this study. To increase confirmability, while trying to avoid bias by researchers, all authors of the paper were involved in the process of analyzing and coding and all of them were present at the meetings and expressed their views.
Ethics
This paper is extracted from the research project approved by the Research Center of Social Factors in Health in Kerman University of Medical Sciences with project number 930482. Ethical approval for this study was obtained from Ethics Committee of the Kerman University of Medical Sciences [The code of Ethics: IR.KMU.REC.1393.654]. Written informed consent was taken from all the participants. All methods were carried out per relevant guidelines and regulations. All participants were assured that their comments would be confidential and that no identifying information would be published.
Discussion
The qualitative study was done to identify the reasons for diabetic patients’ non-participation in self-care training programs. As a result of analyzing the findings, the five main themes including access; individual, familial and social factors; attitude and awareness; motivators and need factors were extracted.
Access was the first obstacle to patients’ participation in self-care training programs, which include sub-codes such as physical access and time access. In another study, a lack of enough and suitable space for education is reported as a main problems related to participation in self-care courses [
22]. Most of the audience who refused to take part in classes due to weak local access was from the old-age group. Since the elderly prevails among the patients and audiences of the classes, it is thus crucial to facilitate local access for the participants in the educational courses. Using locations with a suitable structure and holding classes on the ground floor, especially for the elderly, must be taken into consideration. Besides, in-person education at home or on the phone and distance education through mass media and cyberspace are among the reliable methods to communicate information to patients and their family members and to solve spatial problems.
Individual, social and familial factors are other obstacles on the way to participating in the self-care training schemes. In line with the current study, previous studies have suggested hectic work and business and difficulty in getting time off work as social obstacles to the training and self-care of diabetic patients [
23,
24]. Previous studies showed that patients who are unemployed or retired are more likely to attend in self-management programs than those who work full or part-time [
10,
25]. Therefore, having flexible timing and holding classes in the afternoon, and making use of alternative methods of educational classes help to alleviate these obstacles. It is reported that support from fellows and family members as the facilitating factor in enabling individuals in self-care behavior in their study [
26]. Thus, awareness of family members about the importance of self-care behavior and the necessity for participation in educational programs to support the patients in their participation in educational classes is crucial.
Another effective factor in the reduction in exploiting self-care educational programs among diabetic patients is related to the physical abilities of the patients. Old age and suffering from chronic diseases result in physical disabilities and problems leading to impediments to participation in educational classes. Mogre et al. have also identified old age and pain as obstacles to the implementation of self-care behavior [
27]. Making use of mobile phone applications leads to an increase in self-care behavior in patients with chronic diseases [
28]. Therefore, designing and using educational self-care mobile phone applications, virtual education or in-person training by healthcare providers, and teaching the patients’ family members are among the solutions for the above-mentioned challenge.
Attitude and awareness including sub-themes such as attitude to disease, attitude to education, attitude to health, and awareness were other reasons for patients’ non-participation in self-care programs. Understanding diabetes on the part of patients in terms of preserving self-care behavior is vital. Mogre et al. have also identified the false image of contracting diabetes as one of the obstacles to self-care in their study [
27]. The findings of the present study identify the negative attitude toward the effectiveness of self-care behavior in controlling diabetes as one of the obstacles to the implementation of self-care behavior in patients. This result is consistent with the results of study conducted by Gucciardi et al. [
10]. Part of these attitudes is the result of cultural beliefs identified in the study done by Whittermore et al. as one of the obstacles to the creation of self-care behavior [
29]. It seems that unless individuals acquire a proper insight into diabetes, the possibility of participation in in-person classes will not increase. This, in turn, needs a clear explication of the importance of the disease and its dangerous side-effects on the part of healthcare providers, instructors, health media, and diabetes associations.
Another effective factor in the exploitation of self-care educational programs is patients’ little awareness of the importance of educational schemes, and the time and location of the educational classes. Concurrent with the findings of the present study, another study identify a paucity of proper promulgation about educational programs and lack of information on the part of service providers about the importance of the patients’ participating in such programs as fundamental problems of diabetic patients with self-care [
30]. Studies show that in developed countries patients have higher expectations and more information should be provided for patient participation. These studies found that centers that provide patients with information on when and where to go, where to park, what to bring, whom they will see, and what to expect, in addition to providing a reminder call prior to the appointment, dramatically reduce initial non-attendance rate [
31].
The lack of motivators was another reason for patients’ non-participation in self-care programs. One study showed that the absence of heartening instruments by healthcare providers as motivational obstacles effective on participation in educational programs [
30]. Monitoring and following up with patients after participating in educational classes via telephone or in-person contribute to their more success in controlling their ailment and more participation in educational classes. Providing awards and prizes for those who attend the classes regularly as offered by patients. Weak connections and mutual misunderstandings between patients, healthcare providers, and instructors also contribute to individuals’ disinterest in taking part in educational classes. The findings of various studies showed that the relationship between the doctor and the patient affected the implementation and following up self-care behavior [
17,
32]. Therefore, teaching and enhancing the communicative skills of service providers and instructors are of the exigencies of holding educational courses. Although training is one of the most effective ways to enhance self-care conduct, weakness in contents and unsuitable teaching techniques can hinder the use of the educational programs, which are also mentioned by the patients in the present study. In another study, unsuitable teaching content is said to be one reason for the disinterest in such schemes [
24]. Using supplementary books and reflecting the experience of cured patients by themselves were suggested by the interviewees. Surveys on patients’ awareness of diabetes and favorite teaching methods can lead to better planning and increasing the attractiveness of the classes. Schafer et al. have recommended using the private than group education and adopting a multidimensional rather than presentational method because they are more effective on self-care behavior [
17]. Therefore, enjoying such various teaching methods as educational technology, multimedia resources, and sending educational short messages in designing self-care educational schemes are suggested.
A feeling of not needing educational programs is an effective factor in non-participation in self-care programs. The present findings introduce ignorance of the danger of diabetes on the part of patients as another obstacle to the implementation of self-care behavior, which confirms the results of previous studies [
10,
33]. Thus, building awareness about the dangers of diabetes and its side effects in patients by healthcare providers, mass media, and affiliated associations seems all-important.
Inaccessibility of educational information through other resources such as the media, the Internet and tutorial booklets is another obstacle to participation in educational programs. Various studies have shown that using suitable educational apparatus (laptop, DVD, and PowerPoint), phone tracking, mobile virtual system, and email is effective in teaching self-care to cardiac patients [
34,
35]. In the status quo that access to teaching and learning resources in society seems to have reached wide areas, it is better to move toward new educational methods, especially since these methods lead to the economization of people’s time and educational expenses. Despite the advantages of these educational methods, unknown and adverse information given by the media will result in distrust of therapeutic programs [
36]. As a result, surveillance and giving, the necessary instructions to implement these educational methods should be considered by healthcare planners and decision-makers.
Self-efficacy is the trust put in one’s abilities by themselves to follow up behavior and is a vital prerequisite to behavior change [
37]. In the present study, the patients did not continue taking part in the educational classes after they had acquired the ability to handle their disease and created a feeling of self-efficacy. In the study done by Gucciardi, patients’ self-confidence in the cognition of their abilities to manage diabetes was also identified as an obstacle to participation in self-care educational programs [
10]. Therefore, regarding the fact that patients do not attend the educational classes following the creation of self-efficacy, phone tracking by providers to monitor self-care behavior in such patients can contribute to the better implementation of this salubrious behavior.
One of the limitations of this study was a lack of collaboration on the part of the health center officials and those who participated in the study as well, who were briefed to cooperate by offering explanations about the advantages and importance of the study. Individuals’ disinterest in going to the health center for the interview was another limitation that was alleviated by going to people’s homes and workplaces. We excluded diabetic patients who participated in the self-care program, therefore, we could not examine the factors influencing people’s participation in self-care programs.
Recommendations for further research include economic evaluation studies of training programs for diabetic patient, longitudinal studies that examine the impact of training programs on quality of life and costs of diabetic patients.
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