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Japan Journal of Nursing Science (2013) 10, 121–129
doi:10.1111/j.1742-7924.2012.00218.x
ORIGINAL ARTICLE
Barriers to diabetes control from Syrian women’s perspectives
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Suzan ZAMZAM, Monireh ANOOSHEH and Fazlollah AHMADI Department of Nursing, Faculty of Medical Sciences, Tarbiat Modares University, Tehran, Iran
Abstract Aim: Diabetes constitutes a major public health problem and is a leading cause of morbidity and mortality. The purpose of this study was to explore the barriers to diabetes control of middle-aged Syrian women with type 2 diabetes. Methods: A qualitative approach was adopted using conventional content analysis of semi-structured interviews carried out with 12 women with type 2 diabetes in the diabetic center in Lattakia (Syria) between March 2010 and December 2010. The participants were recruited by the purposeful sampling method. Results: Three main themes emerged from the data analysis: (i) a poor patient–healthcare provider relationship; (ii) inadequate education; (iii) and psychosocial problems. The first theme had two subthemes: (i) relationship with doctors; and (ii) relationship with nurses. The second theme was without subthemes. The third theme consisted of six subthemes: (i) work and family responsibilities; (ii) motherhood role; (iii) lack of social support; (iv) anxiety; (v) depression; and (vi) low self-efficacy. Conclusion: The findings support that effective relationships can be enhanced through active listening and by opening a free channel for the flow of ideas and information between patients and healthcare providers. Additionally, providers have an important role to play in learning to identify and manage the psychosocial problems that arise in living with diabetes, so that their patients can be supported in overcoming barriers to managing their diabetes more effectively. Key words: barriers, control, middle-aged women, qualitative research, type 2 diabetes.
INTRODUCTION Diabetes constitutes a major public health problem and is a leading cause of morbidity and mortality (Alberti, Zimmet, & Shaw, 2007; Fox et al., 2007; Nathan et al., 2009). It is a chronic health condition that affects millions of Americans and increases risk for developing disease-related complications (Deshpande, HarrisHayes, & Schootman, 2008). Recently, the prevalence of diabetes has been dramatically increasing in the world (Wild et al., 2004). It is estimated that more than 170 million people worldwide had diabetes in 2000, mostly type 2, and they are likely to exceed 360 million
Correspondence: Monireh Anoosheh, Department of Nursing, Faculty of Medical Sciences, Tarbiat Modares University, PO Box 14115-331, Nasr Bridge, Tehran 1411713116, Iran. Email:
[email protected] Received 23 August 2011; accepted 30 April 2012.
by 2030 (World Health Organization, 2006). The largest increases in diabetes prevalence will take place in developing countries. Moreover, in developing countries the majority of diabetes patients are in the 45–64-year age range (Wild et al., 2004). In a previous study in the Arab region, the overall prevalence of diabetes in Saudi Arabia was found to be 23.7% among people aged between 30 and 70 years (Al-Nozha et al., 2004). The prevalence of diabetes in the United Arab Emirates, Bahrain, and Kuwait was 20.1%, 14.9%, and 12.8%, respectively (International Diabetes Federation, 2003). In Syria, diabetes is the most common chronic disease (Ohanionn & Aljabi, 2008). More recently, it was estimated that among Syria’s population of 20 million, approximately 3–3.5 million people have diabetes (Ohanionn & Aljabi, 2008). The increased number of diabetes patients will contribute to the risk of illness and healthcare burden in these populations and their countries.
© 2012 The Authors Japan Journal of Nursing Science © 2012 Japan Academy of Nursing Science
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Japan Journal of Nursing Science (2013) 10, 121–129
In general diabetes, particularly type 2, is a disease more prevalent in women than in men (Ozcan & Sahin, 2009). In addition, depression rates are doubled in the presence of diabetes and are considerably higher in women with diabetes compared with men with diabetes (Manuel & Schultz, 2003). The comorbidity of depression with diabetes is associated with a higher risk of complications (Coker & Shumaker, 2003), death (Katon et al., 2005), elevated glycosylated hemoglobin A1c (HbA1c) (Gross et al., 2005), lower physical activity, poorer compliance, and improper diet (Lin et al., 2004). It is because of these factors and findings from previous studies that middle-aged women, aged 40–65 years, were chosen as the focus of this study. Glycemic control is fundamental to the management of diabetes and is an indicator of diabetes outcomes. Glycemic control is defined as normal fasting and postprandial glucose concentrations in the absence of hypoglycemia (American Diabetes Association, 2009). Poor and inadequate glycemic control among patients with type 2 diabetes constitutes a major public health problem in Lattakia, Syria, and is a major risk factor for developing secondary complications (Koro et al., 2004). Therefore, although diabetes control requires complicated treatments and long-term lifestyle changes (International Diabetes Federation, 2003), it remains the major therapeutic objective to prevent damage to body organs and other complications arising from the effects of having type 2 diabetes (Koro et al., 2004). Several studies investigated barriers to diabetes control and treatment. The majority of those studies reported four major themes affecting adherence to treatment regimens: (i) communication with the healthcare provider; (ii) knowledge of diabetes; (iii) the consequences of poor glycemic control; and (iv) beliefs and attitudes (Carbone, Rosal, Torres, Goins, & Bermudez, 2007; Matthews, Peden, & Rowles, 2009; Onwudiwe et al., 2011; Vermeire et al., 2007). Furthermore, many studies pointed to the culture effect on adherence to diabetes management (Ciechanowski et al., 2001; Song & Lipman, 2008). On the other hand, those studies clarified how culture might affect the interpretation and experience of diabetes along with self-management of the illness (Carbone et al., 2007; Chun & Chesla, 2004; Lai, Lew-Ting, & Chie, 2005). Therefore, although findings of high comorbidity related to socioeconomic factors and diabetes are consistent, the majority of studies about diabetes performed in Western countries cannot be readily applied to different non-Western cultural health settings (Pouwer et al., 2003). Consequently, few have been conducted in developing coun-
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tries. The applicability of existing research is limited for developing countries. Thus, there is an urgent need to conduct studies about experiences of diabetes control in developing countries. In general, few diabetic researches have been conducted in Syria. Most of those were quantitative studies. For example, Albach (2001) clarified that because Syria has witnessed a tremendous change in food habits and lifestyle within the last few decades, the prevalence of obesity was 35%, which indicated that obesity was contributing to the increasing prevalence of diabetes (Albach, 2001). Also, Albach added that the high rate of complications in Syria may be due to the lack of proper control of diabetes, and insufficient monitoring and follow up of patients. Unfortunately, there is limited information about the experiences of Syrian women with diabetes. However, researchers and clinicians need to understand the experiences from a Syrian perspective in order to build supportive and culturally sensitive interventions for the management of the illness. The present study aimed to explore the barriers to diabetes control in middle-aged Syrian women with type 2 diabetes.
METHODS The present study was part of a PhD dissertation investigating the diabetes control process in middle-aged Syrian women with type 2 diabetes. In this research, a qualitative approach was adopted using conventional content analysis of semi-structured interviews carried out on 12 women with type 2 diabetes who were all visiting the Diabetes Center of Lattakia, Syria. Conventional qualitative content analysis is a research method for the subjective interpretation of the content of text data through the systematic classification process of coding and identifying themes or patterns, in which coding categories are derived directly and inductively from the raw data (Hsieh & Shannon, 2005). On the other hand, it is an approach of empirically, methodologically controlled analysis of texts within their context of communication, following content analytical rules and step-by-step models, without rash quantification (Graneheim & Lundman, 2004; Spannagel, Michaela & Schroeder, 2005).
Sample The participants were recruited by the purposeful sampling method. The sample consisted of 12 women with diabetes who were all visiting the Diabetes Center of Lattakia, Syria. The head nurses of the Diabetes Center
© 2012 The Authors Japan Journal of Nursing Science © 2012 Japan Academy of Nursing Science
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Table 1 Demographic characteristics of women interviewed (n = 12) Characteristic Age (years) 40–49 50–59 60–65 Marital status Single Married Divorced Education Illiterate Primary school Secondary school University Occupation Housewife Employed Retired Duration of diabetes (years) 4–7 8–14 15–23
n 4 5 3 1 10 1 4 2 2 4 4 7 1
4 5 3
assisted in identifying and recruiting participants. The inclusion criteria were: (i) middle age (aged 40–65 years) and female sex; (ii) a history of diabetes of at least 2 years; (iii) ability to speak an Arabic language; and (iv) willingness to be interviewed. The sampling was based on a maximum variant approach in terms of the age, marital status, level of education, occupation, and duration of diabetes (years). This sampling strategy enabled the researchers to capture a vast range of views and experiences (Streubert & Carpenter, 2003). The participants’ ages ranged 45–62 years (mean, 53.5 years); one was single, 10 married, and one divorced. Educationally, four had an academic degree, two had completed secondary education, two had received incomplete secondary education, and four were illiterate. Regarding employment, four were housewives, seven employed, and one retired. The duration of diabetes for the participants was 4–23 years (see Table 1).
Data collection Semi-structured interviews were conducted by the Syrian first author Z. M. in a private room to collect in-depth data. Each interview lasted between 20 and 40 min and was recorded using a digital audio system.
The interviews were conducted between March and December 2010 in Arabic and then translated into the English language by two professional translators. All the authors independently reviewed the English transcripts. The participants were interviewed one to three times depending on the need to clarify or verify the gathered data. The participants were encouraged to speak freely about their barriers to diabetes control (see Table 2). Data collection continued until saturation was reached. Saturation occurred when no new codes or categories emerged from analysis of the data (Strauss & Corbin, 1998).
Ethical considerations The study was approved by the research council affiliated with Tarbiat Modares University, Tehran, Iran. Official permission was obtained from the Diabetes Center of Lattakia in order to conduct the study. The ethical issues were concerned with the participants’ autonomy, confidentiality, and anonymity during the study period and publication. The participants were informed of the purpose, the design of the study, and the voluntary nature of their participation. They were assured that not participating in the study would not have any influence on their health care. In addition, permission for digital recording of the interview was obtained from each participant. Informed consent was obtained from the participants who agreed to be involved in the study.
Data analysis The analysis was carried out by the Syrian first author Z. M. with the second author acting as co-reader. The interviews were tape-recorded and then transcribed verbatim immediately after each interview. Each transcript was read several times to enable the researcher to become familiar with the data. Several important and necessary steps were followed during analysis. First, the transcript was re-examined and read line-by-line to identify the unit of analysis (Graneheim & Lundman, 2004). The most suitable unit of analysis selected were whole interviews that were large enough to be considered a whole and small enough to be possible to keep in mind as a context for the meaning unit during the analysis process. In the second step, the meaning unit was recognized (Graneheim & Lundman, 2004). A meaning unit was considered to be words, sentences, or paragraphs containing aspects related to each other through their content and context. The third step involved taking on what Graneheim and Lundman called the practice of condensing, which means taking a step to decreasing the
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Table 2 Interview guide Main questions
Probing questions
How did you experience the diagnosis of diabetes? In what way did diabetes change your life? How did you experience the diabetes treatment? Have you ever experienced any barriers to control your diabetes? Are there services you need to support your diabetes control that you currently do not have?
What? Why? How?
Table 3 Emerged themes and subthemes Main themes
Subthemes
Poor patient–healthcare provider relationship with doctors and nurses Inadequate education Psychosocial problems Work and family responsibilities, motherhood role, lack of social support, anxiety, depression, low self-efficacy
size of meaning unit, but it indicates nothing about the quality of what remains (Graneheim & Lundman, 2004). Considering the context, the meaning units were condensed into a description close to the text, the manifest content, and, where possible, an interpretation of the underlying meaning, the latent content. In the fourth step, the condensed meaning units were abstracted and labeled with a code. Lastly, various codes were compared based on differences and similarities and sorted into subthemes and themes (Graneheim & Lundman, 2004; Hsieh & Shannon, 2005). Trustworthiness or credibility was established through member and peer checks. Member checks were done by asking the participants to verify the preliminary findings from the earlier interviews. Rigor in qualitative research was increased by asking six participants to compare the results of the study with their own experiences. Three faculty members checked approximately half of all transcripts (peer checks). The analysis was finalized by identifying a number of themes that emerged to describe the patients’ points of view and experiences regarding barriers to diabetes control.
RESULTS Three main themes emerged: (i) poor patient–healthcare provider relationship; (ii) inadequate education; and (iii) psychosocial problems. These themes were made up of eight further subthemes (see Table 3). The following narratives support themes by using common elements of descriptive words and quotations to expand and communicate the meaning of each theme.
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Poor patient–healthcare provider relationship A major theme that emerged from the data was a poor patient–healthcare provider relationship, subthemes included relationship with doctors and relationship with nurses.
Relationship with doctors Many women had expected a more caring approach from the healthcare provider in relaying and explaining the diagnosis. They mentioned that their healthcare providers are silent and indifferent to the seriousness of their diabetes. That has a direct influence on the women’s perceived seriousness of diabetes. So, those who felt they had poor communication with their healthcare provider reported poor adherence to treatment: If my doctor had acted like this was serious from the start, I would have taken it more seriously. I honestly don’t remember him sitting me down and really talking to me about my diabetes (45-year-old woman).
Many women pointed to limited time of consultations. There is not enough time to listen to patients problems or discuss details about the illness or complications because the length of clinic visit is insufficient: Some doctors don’t allow us to discuss with them the details of our treatment because there is not time. For me, not being allowed to speak freely is the biggest problem (55-year-old woman).
Moreover, many women complained that doctors do not understand their difficulties and do not offer sufficient encouragement for adherence to treatment regimens:
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Doctors don’t understand what it means to live with diabetes for 365 days a year (49-year-old woman). And I think psychological status is more important than the physical activity and food regimen. It is even the most important thing in our lives. Therefore, my doctor must encourage me and give me the hope of achieving control of my illness, but he doesn’t do this (54-year-old woman).
Relationship with nurses The majority of the women mentioned that nurses are not concerned about diabetics. In other words, nurses have an almost limited role in the diabetes care process. Moreover, women declared that they do not trust in nurses’ ability to take care of them. So, they only talk to doctors about their problems and concerns: The nurses’ work is almost limited to blood sugar tests and doctors’ appointments. They don’t do more than that for us; nurses don’t even understand our suffering. In fact, I think our nurses do not have enough skills to care for us (50-yearold woman).
Inadequate education Participants identified more education as a necessary service to prevent diabetes-related complications. The women claimed that increased diabetes-related knowledge is associated with better adherence and adjustment to any diabetes treatment program, and avoidance of diabetes complications: I like to get more information about my illness, why my blood sugar is increased or decreased. I think more information is a main cause for better adherence to my treatment plan (57-year-old woman). And often, not enough information and explanation of the treatment is provided. When I get this, it lowers my fears and worries, and I find it positive (45-year-old woman).
Psychosocial problems Psychosocial problems including work and family responsibilities, motherhood role, lack of social support, anxiety, depression and low self-efficacy have been identified as main barriers to achieving diabetes control.
Work and family responsibilities Many participants discussed the challenge of integrating diabetes management with work and family responsibilities; most frequently, participants attributed time limitations to balancing family and work responsibilities and with having limited time to exercise: The biggest problem I have is time. I was used to eating on the run. Dinner often was through the drive-through. I had four children, I’ve got a demanding job, and I just kind of
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ran non-stop . . . and creating a balance between taking care of myself and taking care of my family, and handling responsibilities at work, is just constantly tugging at me (49-yearold woman).
Motherhood role Women reported that motherhood role and the related responsibilities of this role were a cause for stress and lack of opportunities to take care of themselves: My circumstances were very difficult in that I had big family responsibilities, my children were small, they need all my time, and they need a lot of my care and attention. Therefore, I did not have an opportunity to take care of myself and that was a great source for stress. I have many complications as a result of poor diabetes control (55-year-old woman).
Lack of social support Lack of social support was identified by one unmarried woman in this study who emphasized that family relationships play an important role in adherence to diabetes control: I am an unmarried woman, my parents died. My brothers have children and their own lives. They do not have time for me. In fact, this is a main cause for my depression and non-adherence to my regimens (54-year-old woman).
Anxiety Some women experienced a range of anxieties about their illness development or the future health of their children. Moreover, participants reported that anxiety is linked with poor metabolic control, and, eventually, the development of long-term complications: I have severe anxiety about my health and my children’s health . . . In fact, I have great anxiety about having diabetic complications and then dying from this illness . . . My mother and grandmother died from diabetes . . . As a result, I think this anxiety is a main cause for my blood pressure (55-year-old woman).
Depression Other women described suffering from depression due to the diagnosis of diabetes and having long-term regimens: Knowing that I have diabetes was the reason for a great and deep depression because having diabetes was an unexpected thing for me . . . furthermore, diabetes is a chronic illness . . . that means I have to follow long-term life regimens (53-year-old woman).
Low self-efficacy Self-efficacy has been defined as “a judgment of one’s abilities to produce given attainments” (Senecal,
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Nouwen, & White, 2000). Participants in this study showed low levels of self-efficacy, expressed as “lost confidence”, being “unsuccessful”, and ‘I can’t help myself’. The women talked about multiple complications related to diabetes, changing medication regimens, and their inability to control food regimens as reasons for poor glycaemic control. This negative emotion impacted on the women’s feelings about self: I got a tablet from the first day of my illness, but because my blood sugar level was increasing . . . now I am getting insulin injections . . . in fact, I think my doctor has changed my medication regimen because I couldn’t adhere to my treatment plan . . . you know, I failed in controlling my illness (54-year-old woman). And I wanted to control my food intake, but I couldn’t. Even now, I have a very good appetite and I can’t help myself . . . I eat everything that I find (54-year-old woman).
DISCUSSION This study sought to provide a better understanding of the barriers to diabetes control by middle-aged Syrian women with type 2 diabetes. The participants experienced three major barriers to the control of type 2 diabetes: (i) poor patient–healthcare provider relationship; (ii) inadequate education; and (iii) psychosocial problems. In theme 1, poor patient–healthcare provider relationship was congruent with results of another study reporting that poor communication on the part of the patient and the provider may be a barrier to adherence to treatment regimens and lead to feelings of frustration and inadequacy for both parties (Ciechanowski et al., 2001; Matthews et al., 2009; Onwudiwe et al., 2011; Piette et al., 2003; Vermeire et al., 2007). Whereas, satisfaction with the interpersonal quality of the patient– provider relationship is significantly associated with adherence to diabetes regimens (Stubblefield & Mutha, 2002). Furthermore, Peyrot et al. (2005) reported that addressing psychosocial problems may improve diabetes outcomes, but providers often lack critical resources for doing so, particularly skill, time, and adequate referral sources. This demonstrates the need for interventions to train healthcare providers to become better listeners and learn to be empathic with their patients. In theme 2, inadequate education was consistent with results of another study reporting that it is clear that education plays a central role in diabetes control and a patient’s inadequate knowledge about the disease is a key obstacle to good management (Carbone et al., 2007; Matthews et al., 2009; Onwudiwe et al., 2011; Ver-
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meire et al., 2007). Unfortunately, education takes time, and primary care physicians are poorly reimbursed for this time (Rakel & Weiss, 2007). Therefore, persons with diabetes generally have a poor knowledge of care and there is usually no consistency in the way information is delivered to them (Naqib, 2002). The findings in the study presented here suggest that inadequate knowledge, even partly, was due to lack of healthcare provider sources, especially regarding nursing staff in that there is no continuing education for nurses or specialist nurses. Therefore, the provision of diabetes specialist nurses is urgent, particularly specialist nurses talking to patients about self-management, teaching medication management, having a higher level of involvement in medication prescribing, and who are more willing to take on additional responsibilities than general nurses (Siminerio et al., 2007). Theme 3, psychosocial problems, included work and family responsibilities, motherhood role, lack of social support, anxiety, depression, and low self-efficacy. Work and family responsibilities, motherhood role, and lack of social support was congruent with the results of another study reporting that the demands of family and work were challenges to diabetes control (Savoca, Miller, & Quand, 2004). Furthermore, balancing familial and work responsibilities may complicate diabetes management because of feelings of obligation (Finucane & McCullen, 2008). Additionally, the findings of the present study suggest that motherhood role and the related responsibilities of this role are a main cause for stress and lack of opportunities for self-care. This finding was consistent with another study in which women who cared for multiple family members reported the greatest stress (Samuel-Hodge, 2000). Women with diabetes in this study also mentioned lack of family support as a barrier to diabetes control. This finding was congruent with another study that suggested that lack of emotional support can cause diabetes burnout resulting in not only poor glycemic control but also a sense of powerlessness and discouragement about the disease, as well as fear of its long-term complications and attendant frustration (Rakel & Weiss, 2007). Moreover, diabetes patients identified that having the social support of family and significant others is crucial to remain in control of their illness (Bulsara, Ward, & Joske, 2004; Rakel & Weiss, 2007). The participants in this study reported frequently psychosocial problems including anxiety, depression, and low self-efficacy. These findings were supported by many prior studies concerning diabetes. Lustman et al. (2000) found that negative attitudes and psychological prob-
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lems such as depression and anxiety were common in diabetes and could contribute to poor treatment outcomes. In addition, Rose et al. (2002) identified that self-efficacy, an individual’s confidence to perform a specific behavior under particular circumstances, was consistently related to adherence to diabetes control.
ACKNOWLEDGMENTS
Limitations
REFERENCES
The findings of this study added to our understanding of the barriers to diabetes control of middle-aged Syrian women with type 2 diabetes. Some limitations of the current study should be noted. Having more than one researcher on the team has the potential to limit bias, but one researcher gathered the data by using a single method (individual interview). Therefore, researcher bias may limit the transferability of the findings to other diabetes patients. Moreover, the sample size is quite diverse with a wide age range and many educational levels of the participants which affect transferability. On the other hand, unfortunately, HbA1c levels and the diabetes complications of participants were unconsidered. There are also limitations to the transferability of our results because participants were sampled from only one geographic area. Finally, the findings reflect only the views of the women being treated for type 2 diabetes. Future inquiry should include input from the healthcare providers, diabetes educators, and a more diverse group of participants.
CONCLUSION There are many challenges to achieve diabetes control. A poor patient–healthcare provider relationship had a strong bearing on adherence to the treatment plan. Effective relationships can be enhanced through active listening and by opening a free channel for the flow of ideas and information between patients and healthcare providers. Furthermore, based on the findings of this study, diabetes education with trained diabetes educators has been incorporated as an “indispensable medical service”. Additionally, providers have an important role in the management of psychosocial problems that arise from living with diabetes, so that their patients can be supported in overcoming barriers to managing their diabetes more effectively. Finally, in Syrian culture, we found that women taking care of family (home care and child care) was very important, even more important than their self-care. Thus, family responsibilities and motherhood role were strong barriers to achieving diabetes control.
This study was supported financially by Tarbiat Modares University, Tehran, Iran. The authors wish to thank sincerely all the patients who participated in this study.
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