Background: Type 2 diabetes mellitus (T2DM) is a chronic disease that can cause adverse effects if not managed effectively. The prevalence of T2DM will continue to rise every year, and data from the International Diabetes Federation show that the number of patients diagnosed with T2DM in Indonesia is predicted to increase from 10.3 million in 2017 to 16.7 million in 2045. Managing T2DM properly is a challenge for the patients because they need to implement lifestyle changes that involve the self-monitoring of blood glucose, consuming prescribed medication properly, maintaining a healthy diet, getting sufficient physical training, keeping a healthy sleeping pattern, managing stress properly, and consulting medical professionals regularly. The worldwide intervention for T2DM focuses on self-management education. The varied results in studies about interventions show that no particular intervention method can be regarded as the most effective. In Indonesia, there are limited studies on educational interventions to improve the quality of life and health of patients with T2DM.
Objective: This study aims to explore the experiences and needs of patients with T2DM in Sleman Regency, Yogyakarta, Indonesia, to develop effective self-management education.
Methods: The study will use the phenomenology method with purposive sampling to collect data. The inclusion criteria are patients in the Chronic Disease Self-Management Program at the Sleman Regency Public Health Center who are aged ≥18 years, diagnosed with T2DM for more than a year, with hemoglobin A1c levels ≤7.5% and >7.5%, capable of communicating verbally and literate in the Indonesian language, not deaf, and willing to participate. The data collection is based on the Social Cognitive Theory, which involves selecting assessment targets and analyzing personal factors, environment, and behavior that determine the knowledge, attitude, and adherence of persons with T2DM. Researchers will collect the data through in-depth, face-to-face interviews to learn about knowledge, self-efficacy, outcome expectancy, outcome experience, worry, illness belief, treatment belief, diet, physical activity, medicine intake, treatment pattern, support system, as well as ethnic and cultural influences. The results will be taken from unstructured and open-ended questions written in Indonesian according to the interview guidelines. The data analysis process will go through several stages: reading the data thoroughly; coding; sorting the categories; creating the themes; making general descriptions; and presenting the data in charts, narratives, and recorded quotations from the interviews.
Results: This study received a grant in May 2021 and gained permission from the Medical and Health Research Ethics Committee of Universitas Gadjah Mada, Indonesia, on July 1, 2021. Data collection started on August 12, 2021, and the results are expected to be published in 2022.
Conclusions: The results of this study will be used to design an educational intervention model to improve the knowledge, attitude, and adherence of patients with T2DM.
International Registered Report Identifier (IRRID): DERR1-10.2196/37528
The prevalence of type 2 diabetes mellitus (T2DM) worldwide is projected to increase from 463 million in 2019 to 700.2 million in 2045 . This global trend makes diabetes an epidemic [ , ]. Indonesia has the 7th largest number of patients with T2DM with 10 million confirmed cases and 5.2 million undiagnosed cases [ ]. T2DM contributes to 2% of the mortality rate worldwide and 6% of the mortality rate in Indonesia [ , ]. Globally in 2019, T2DM and its complications caused the deaths of around 4.2 million people aged 20-79 years. At this rate, it means that every 8 seconds, 1 person dies of T2DM, with nearly half (46.2%) of the mortality coming from the working-age population (aged <60 years). The increased mortality rate and decreased quality of life caused by T2DM and its complications affect the health and economy of the patient, family, society, and even the country’s health system [ ].
Managing T2DM properly is a challenge for the patients because they need to implement lifestyle changes that involve the self-monitoring of blood glucose, consuming prescribed medication properly, maintaining a healthy diet, getting sufficient physical training, keeping a healthy sleeping pattern, managing stress properly, and consulting medical professionals regularly . Various problems faced by patients with T2DM include an unhealthy diet, the lack of physical activity, and poor knowledge about how the disease and treatment affect the patients’ treatment and medication adherence [ ]. Several factors that affect medication adherence among patients with T2DM are therapy duration; complex treatment; miscommunication between patients and medical staff; the lack of information; psychological factors; and the patients’ poor perception of the benefits, security, side effects, and cost of the treatment [ , ]. The lack of adherence will increase the risk of microvascular and macrovascular complications [ , - ]. Patient adherence to treatment is the key to successfully treating chronic diseases such as T2DM [ - ]. The lack of knowledge regarding the treatment also corresponds to poor patient adherence and causes treatment failure [ ].
Another problem related to T2DM in Indonesia involves the public misperceptions about the disease and treatment. One study found several public false perceptions about T2DM . Another study says that only people of high economic status can have T2DM and that people of low economic status cannot possibly have the disease [ ]. People also believe that T2DM is a hereditary disease that only affects those with a family history of T2DM. Furthermore, people still believe that they could prevent T2DM if they live a traditional lifestyle and deny that an unhealthy diet and smoking can cause T2DM [ ]. Some patients think that T2DM is not a serious disease because they can still do daily activities. According to some people’s religious belief, T2DM is given to them by God [ ]. T2DM is also considered to be bad karma and inherited from a past life as a hereditary disease. Many patients with T2DM experience stress because they cannot accept their condition [ ]. Many patients have low medication adherence and prefer alternative or complementary therapy [ ]. Additionally, traditional medication has become popular because people have more trust in traditional medical practitioners than modern medical practices. Additionally, they are worried about the side effects of modern medication and remain skeptical about its efficacy [ ].
Social Cognitive Theory
We will use Bandura’s Social Cognitive Theory (SCT) as the basis of this qualitative study plan. According to the theory, the 3 components that affect someone to change their health behavior are self-efficacy, purpose or intention, and outcome expectancy . Bandura expounded human behavior in terms of triadic reciprocal causation, which refers to the causal relation of personal and cognitive factors, behavior, and environment. These 3 factors work interdependently as the defining factors with other bioecological aspects [ ]. Bandura’s SCT emphasized the strong connection between personal factors, behavior, and environment, supported by learning through observation [ , ]. The main elements are knowledge, social support, outcome expectancy, self-regulation, and self-efficacy [ ]. SCT is highly effective in predicting and explaining patient adherence to diabetes treatment [ ]. Self-efficacy is closely related to the individuals’ belief in their capacity to perform certain behaviors, such as exercising [ ]. However, most researchers only focus on some SCT components, namely self-efficacy and self-regulation, and ignore the other aspects [ ]. One study shows that intervention on patients with T2DM using SCT can improve patient adherence to proper diet, physical activity, treatment, self-foot check, and the self-monitoring of blood glucose [ ]. Another study found a similar result, showing that the intervention model using SCT could also increase physical activity and adherence to prescribed medication [ ]. A systematic review revealed that the interventions using SCT on patients with T2DM can increase patient adherence to most aspects of T2DM treatment with a total quality score of 9 out of 10 and shows a more consistent result than the interventions using other behavioral theories [ ]. SCT is considered the most effective model to improve patient adherence to most aspects of T2DM treatment [ , ] and continues to be one of the theories that can be applied to arrange a comprehensive model to change behavior [ ].
Aim and Research Questions
This study will explore the experiences and needs of patients with T2DM in treating T2DM by analyzing personal factors, environment, and behavior.
The following 2 questions will be addressed:
- What are the experiences of patients with T2DM in managing their disease?
- What are the needs of patients with T2DM in managing their disease?
The study will use the phenomenology approach to describe human experiences about a certain phenomenon . We chose phenomenology because this approach is a research strategy used to identify the nature of human experiences regarding the meaning of life as perceived by patients with T2DM. Understanding human experiences makes phenomenology a research method with procedures that require the researchers to analyze the subjects by getting involved directly for a relatively long time to develop the patterns and connections of meaning [ , ]. In this process, the researchers must set personal experiences aside to understand the experiences of patients with T2DM in bringing meaning to their lives. We intend to gain a complete understanding of the patients’ knowledge, attitude, and adherence and the barriers they encounter.
The study participants will be patients in the Chronic Disease Self-Management Program at the Sleman Regency Public Health Center, Yogyakarta, Indonesia, who are aged ≥18 years, diagnosed with T2DM for more than a year, receiving oral medication therapy and not using insulin, have hemoglobin A1c levels ≤7.5% and >7.5%, capable of communicating verbally and literate in the Indonesian language, not deaf, and willing to participate in the research.
The participants will be identified according to the data provided by the Sleman Regency Public Health Center after obtaining the research permit. Subsequently, the participants will be selected according to the criteria stated above. We will hold activities in collaboration with the public health center and public health cadres. Public health cadres are community members who are selected and trained by the community health center to improve public health. Through these cadres, the candidates (patients in the Chronic Disease Self-Management Program diagnosed with T2DM) will be identified. Once all of the requirements are fulfilled, we will choose the candidates to participate in the in-depth interviews.
Qualitative research focuses on depth and process; hence, only a relatively small number of participants (less than 10 people) will be examined in this phenomenological study. The participants will be selected using the purposive sampling technique. The sample will be considered sufficient once the obtained information reaches data saturation or data satisfaction, which refers to the point where no new information can be discovered from additional participants.
Upon the completion of the procedure, each participant will receive Rp 100,000.00 (US $6.77) as a token of appreciation for participating in the research.
Interview Procedure and Data Collection
The data collection components in this research will be interviewers (researchers and field assistants), interview guidelines, field notes, a recorder, and a camera. The research guideline for interviewing patients with T2DM will emphasize the following aspects: knowledge, self-efficacy, outcome expectancy, outcome experience, worry, illness belief, treatment belief, diet, physical activity, medicine intake, treatment pattern, support system, as well as ethnic and cultural influences. Data collection will be done through in-depth interviews, which requires conducting a face-to-face meeting. This type of interview uses unstructured and open-ended questions compiled according to the guidelines to gain insights and opinions from the participants. The time allocated for each participant in 1 meeting will be at least 60-90 minutes. The field note method will be used to document nonverbal information such as date, time, location, and the process description of the interview.
Once the data have been gathered from the participants, it will be organized and prepared for analysis and then typed and sorted into different categories. The data will be read and its meaning reflected upon to thoroughly to understand the participants’ responses. In this process, we will also write several notes regarding the data. The second step will be to conduct deeper analysis through data coding, which includes processing material or information into text, extracting, and sorting them into several categories. These categories will be labeled with specific terms based on the participants’ responses. The categories and themes will then be analyzed to narrow them down to a few themes or categories. These themes will be the main result of the qualitative research, which will later create a more complex analysis, becoming a general description. The third step will involve describing the themes and representing them in narratives or qualitative reports. This narrative covers the explanation about event chronology, certain themes (along with the subthemes, specific illustrations, perspectives, and quotations), or interconnections between themes. Lastly, we will interpret the data based on the questions given to the participants and their responses to gain the essence of their ideas. This interpretation will later become the meaning that comes from the participants’ experience, which aligns with the aim of this study—discovering the participants’ meaning of life. This interpretation will not be our conclusion but rather the participants’ ideas in their own words. Upon the completion of the analysis, the data will be presented in charts, narratives, and recorded quotations from the interview.
Approval for the study’s ethics was received from the Medical and Health Research Ethics Committee, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia (KE/FK/0747/EC/2021).
This study received a grant in May 2021 and gained permission from the Medical and Health Research Ethics Committee of Universitas Gadjah Mada, Indonesia, on July 1, 2021. Data collection started on August 12, 2021, and the results are expected to be published in 2022.
This study aims to examine the experiences and needs of patients with T2DM in treating the disease. The data in this study will be analyzed using SCT, which involves personal factors, behavior, and environment. According to the SCT, the details gathered from the patients should include knowledge, self-efficacy, outcome expectancy, outcome experience, worry, illness belief, treatment belief, diet, physical activity, medicine intake, treatment pattern, support system, as well as ethnic and cultural influences. The study results will be used to create and develop an educational intervention model tested on patients with T2DM. Hopefully, with a proper educational intervention model, the medication knowledge, attitude, adherence, and hemoglobin A1c levels of patients with T2DM can be improved.
The results of this study will be used to design an educational intervention model suitable for patients with T2DM to improve their knowledge, attitude, and adherence.
This study is supported by Universitas Gadjah Mada and Universitas Sanata Dharma. The funders had no role in the study design; data collection, analysis, or interpretation; or writing the paper.
YL developed the study protocol, prepared the data collection tools, conducted primary data collection and analysis planning, and wrote the draft paper. EK, YSP, and SAK supervised the study, reviewed the paper, and provided substantial input. All authors have approved the manuscript for submission.
Conflicts of Interest
- Diabetes Atlas 9th edition. International Diabetes Federation. 2019. URL: https://diabetesatlas.org/ [accessed 2019-12-12]
- Guariguata L, Whiting DR, Hambleton I, Beagley J, Linnenkamp U, Shaw JE. Global estimates of diabetes prevalence for 2013 and projections for 2035. Diabetes Res Clin Pract 2014 Feb;103(2):137-149. [CrossRef] [Medline]
- Wild S, Roglic G, Green A, Sicree R, King H. Global prevalence of diabetes: estimates for the year 2000 and projections for 2030. Diabetes Care 2004 May 26;27(5):1047-1053. [CrossRef] [Medline]
- Preventing chronic diseases : a vital investment : WHO global report. World Health Organization. 2005. URL: https://apps.who.int/iris/handle/10665/43314 [accessed 2020-10-05]
- American Diabetes Association. Standards of medical care in diabetes-2019. Diabetes Care 2019 Jan 01;42(Suppl 1):S13-S60. [CrossRef]
- Wild H. The economic rationale for adherence in the treatment of type 2 diabetes mellitus. Am J Manag Care 2012 Apr;18(3 Suppl):S43-S48 [FREE Full text] [Medline]
- Aronson JK. Compliance, concordance, adherence. Br J Clin Pharmacol 2007 Apr;63(4):383-384 [FREE Full text] [CrossRef] [Medline]
- Dunham PJ, Karkula JM. Effects of a pharmacy-care program on adherence and outcomes. Am J Pharm Benefits. 2012 Jan. URL: https://ajmc.s3.amazonaws.com/_media/_pdf/AJPB_2012janfeb_Dunham_e8to14.pdf [accessed 2020-03-25]
- Krapek K, King K, Warren SS, George KG, Caputo DA, Mihelich K, et al. Medication adherence and associated hemoglobin A1c in type 2 diabetes. Ann Pharmacother 2004 Sep;38(9):1357-1362. [CrossRef] [Medline]
- Rosen MI, Rigsby MO, Salahi JT, Ryan CE, Cramer JA. Electronic monitoring and counseling to improve medication adherence. Behav Res Ther 2004 Apr;42(4):409-422. [CrossRef] [Medline]
- Guillausseau P. Influence of oral antidiabetic drugs compliance on metabolic control in type 2 diabetes. a survey in general practice. Diabetes Metab 2003 Feb;29(1):79-81. [CrossRef] [Medline]
- Kogut SJ, Andrade SE, Willey C, Larrat EP. Nonadherence as a predictor of antidiabetic drug therapy intensification (augmentation). Pharmacoepidemiol Drug Saf 2004 Sep;13(9):591-598. [CrossRef] [Medline]
- Boye KS, Curtis SE, Lage MJ, Garcia-Perez L. Associations between adherence and outcomes among older, type 2 diabetes patients: evidence from a Medicare Supplemental database. Patient Prefer Adherence 2016 Aug 16;10:1573-1581 [FREE Full text] [CrossRef] [Medline]
- Edelman SV, Polonsky WH. Type 2 diabetes in the real world: the elusive nature of glycemic control. Diabetes Care 2017 Nov;40(11):1425-1432. [CrossRef] [Medline]
- Alinia H, Feldman SR. Assessing medication adherence using indirect self-report. JAMA Dermatol 2014 Aug;150(8):813-814. [CrossRef] [Medline]
- Carls GS, Tuttle E, Tan RD, Huynh J, Yee J, Edelman SV, et al. Understanding the gap between efficacy in randomized controlled trials and effectiveness in real-world use of GLP-1RA and DPP4 therapies in patients with type 2 diabetes. Diabetes Care 2017 Nov;40(11):1469-1478. [CrossRef] [Medline]
- Aronson R, Orzech N, Ye C, Goldenberg R, Brown V. Specialist-led diabetes registries and predictors of poor glycemic control in type 2 diabetes: insights into the functionally refractory patient from the LMC Diabetes Registry database. J Diabetes 2016 Jan;8(1):76-85. [CrossRef] [Medline]
- Hsu C, Lemon JM, Wong ES, Carson-Cheng E, Perkins M, Nordstrom MS, et al. Factors affecting medication adherence: patient perspectives from five veterans affairs facilities. BMC Health Serv Res 2014 Nov 13;14:533 [FREE Full text] [CrossRef] [Medline]
- Pujilestari CU, Ng N, Hakimi M, Eriksson M. "It is not possible for me to have diabetes"-community perceptions on diabetes and its risk factors in Rural Purworejo District, Central Java, Indonesia. Glob J Health Sci 2014 Jun 12;6(5):204-218 [FREE Full text] [CrossRef] [Medline]
- Pitaloka D, Hsieh E. Health as submission and social responsibilities: embodied experiences of Javanese women with type 2 diabetes. Qual Health Res 2015 Aug;25(8):1155-1165. [CrossRef] [Medline]
- Yuniarti K. The dynamics of diabetes management for individuals in Indonesia: exploratory indigenous study on health. Int J Psychol 2012 Jul 24;47:481-481 [FREE Full text] [CrossRef]
- Alfian SD, Sukandar H, Lestari K, Abdulah R. Medication adherence contributes to an improved quality of life in type 2 diabetes mellitus patients: a cross-sectional study. Diabetes Ther 2016 Dec;7(4):755-764 [FREE Full text] [CrossRef] [Medline]
- Alfian S, Sukandar H, Arisanti N, Abdulah R. Complementary and alternative medicine use decreases adherence to prescribed medication in diabetes patients. Ann Trop Med Public Health 2016 May 01;9(3):174-179 [FREE Full text]
- Jack LJ, Grim M, Gross T, Lynch S, McLin C. Theory in health promotion programs. In: Feryman CI, Allenworth DD, editors. Health Promotion Programs From Theory to Practice. 1st ed. San Fransisco, CA: Jossey-Bass; 2010:53--54.
- Schunck DH. Learning Theories: An Educational Perspective. 6th ed. Boston, MA: Pearson; 2012.
- Snelling A. Introduction to Health Promotion. New York, NY: John Wiley & Sons, Inc; 2014.
- Borhaninejad V, Iranpour A, Shati M, Tahami AN, Yousefzadeh G, Fadayevatan R. Predictors of self-care among the elderly with diabetes type 2: using social cognitive theory. Diabetes Metab Syndr 2017 Jul;11(3):163-166. [CrossRef] [Medline]
- Heiss VJ, Petosa RL. Social cognitive theory correlates of moderate-intensity exercise among adults with type 2 diabetes. Psychol Health Med 2016 Mar 10;21(1):92-101. [CrossRef] [Medline]
- Albikawi ZF, Petro-Nustas W, Abuadas M. The effect of diabetes self-efficacy enhancing intervention on diabetes self-care management behaviors among Jordanian type two diabetes patients. Am Int J Contemp Sci Res 2015 Jun 1;2(4):34-48 [FREE Full text]
- Tan MY, Magarey JM, Chee SS, Lee LF, Tan MH. A brief structured education programme enhances self-care practices and improves glycaemic control in Malaysians with poorly controlled diabetes. Health Educ Res 2011 Oct 29;26(5):896-907. [CrossRef] [Medline]
- Menti D, Limbert C, Lyrakos G. Investigating the effectiveness of theory-based interventions for improving treatment adherence of patients with type 2 diabetes mellitus: a systematic review of randomized controlled clinical trials. J Health Soc Sci 2019 May 30;4(3):313-330. [CrossRef]
- Creswell JW. Research Design Pendekatan Metode Kualitatif, Kuantitatif, dan Campuran. 4th ed. Yogyakarta, Indonesia: Pustaka Pelajar; 2017:20-21.
- Speziale HJS, Carpenter DR. Qualitative Research in Nursing: Advancing the Humanistic Imperative. 3rd ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2003.
|SCT: Social Cognitive Theory|
|T2DM: type 2 diabetes mellitus|
Edited by T Leung; submitted 24.02.22; peer-reviewed by C Memering, R Rastmanesh; comments to author 19.05.22; revised version received 07.06.22; accepted 09.08.22; published 06.09.22Copyright
©Yunita Linawati, Erna Kristin, Yayi Suryo Prabandari, Susi Ari Kristina. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 06.09.2022.
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