Introduction
With changing lifestyles and increasing prevalence of obesity, diabetes has been a global chronic disease that threatens human life. According to the statistics of the International Diabetes Federation (IDF) in 2013, 382 million people have suffered from diabetes since 2013 [
1]. The number of people with diabetes is expected to increase by 55% by 2035 [
1]. China is on the top list of countries with the highest number of people with diabetes [
1]. The burden imposed by diabetes is significant, both in physiological and social functions, resulting in 5.1 million deaths and consuming up to 548 billion USD in global health expenditure [
1]. This phenomenon could be attributed to diabetes-related complications caused by poor glycemic control [
2]. Optimal glycemic control requires complex tasks completed by diabetic patients in a process known as diabetes self-management; the tasks include adherence to dietary advice and medicine recommendation, engagement in regular exercise, and close monitoring of blood glucose [
3].
Successful diabetes self-management needs support from social systems, such as families, friends, peers, and doctors, in addition to the efforts of the diabetic patient. Social support is conceptualized as emotional/informational or behavioral assistance provided by other people to enhance the self-confidence and well-being of an individual [
4]; this type of support affects health outcomes. Several lines of evidence corroborate that social support sources or networks are protective factors against disease or early mortality [
5]. Previous studies revealed that high level of social support is correlated with improved diabetes self-management [
6–
8]. Concurrent with active and ongoing diabetes self-management, behavioral changes in common routines may occur in family [
9], workplace, or community settings. Family adaptation and encouragement can promote ongoing and effective healthy disease-related behavior of patients (i.e., dietary adjustment, regular exercise, and self-testing of blood sugar); the community can also provide service and good cultural atmosphere for patients to maintain optimal health status [
10]. In addition to support from close relatives, intangible resources may act as important support for self-management of diabetes. Hence, researchers have focused on developing methods for evaluating social support to attain comprehensive and effective diabetes self-management.
Various measurements of social support have been developed by researchers. Malik and Koot [
11] modified the Diabetes Social Support-Friends questionnaire to investigate support received by adolescents with diabetes from their friends; the score was used to predict glycosylated hemoglobin level, treatment adherence and responsibility, and well-being of the patient. Similarly, the Patient Questionnaire on Empowerment and Diabetes Family Behavior Checklist is used to measure the perceived social support from health professionals and families [
12]. In addition, the Social Support Rating Scale, which was developed by Xiao [
13], is widely used to evaluate social support in China; this scale consists of 10 items for assessment of support from families, friends, and healthcare workers. Although studies have increased knowledge on social support, multiple measures of support or multilevel support sources have not been investigated. In this regard, Glasgow
et al. [
14] developed a self-reported questionnaire of perceived support related to disease self-management; this questionnaire is named as the Chronic Illness Resources Survey (CIRS) and is based on multilevel “pyramid” model of social-environmental support related to disease self-management [
15]. This scale covers main support from family, friends, and healthcare resources, as well as distal sources of support from media, workplace, neighborhood, public policies, and community. The CIRS is used in America [
16], Spain [
17], and Thailand [
18] and provides reliable and valid results. However, the Chinese version of CIRS scale has not been used in patients with diabetes in communities in north-western China.
This study aims to assess the utilization of resources and support for chronic illness self-management for patients with diabetes in north-western China by using the revised Chinese version of the CIRS [
19]. We will also verify whether the present strategy is consistent with the theoretical framework of the CIRS scale, that is, the scale is related to diabetes self-management. Furthermore, we will determine factors influencing the utilization of resources and support for chronic illness self-management among diabetics in communities of north-western China.
Prior to the present survey, we completed a pilot study on revising the English version of the CIRS developed by Glasgow [
16] and verified the applicability of the scale in patients with diabetes in communities of north-western China. Glasgow [
16] stated that the CIRS scale is in the public domain and can be reprinted or used without charge or permission. Thus, we translated and revised the scale in the pilot study, which was accomplished in two stages. Stage I is the translation of the CIRS scale and comprises the following steps. (1) Literal translation: a bilingual researcher A and a Chinese bilingual English teacher translated the CIRS scale from English to Chinese. (2) After reaching an agreement, researcher A, the English teacher, another two bilingual researchers, and a diabetes educator working in a hospital discussed the linguistic and conceptual issues of the translated versions compared with the original English CIRS scale and reached an agreement. (3) Culture adaptation: 40 diabetic patients in Chinese communities were invited to fill out the CIRS scale to ensure readability. (4) Retroversion: two bilingual English professionals, who have no knowledge of our study and the CIRS scale, translated the Chinese version back into English. (5) Comparison: all personnel and researchers compared the retroversion with the original English CIRS scale to guarantee conceptual consistency. Stage II is the applicability test of the Chinese CIRS scale. A total of 160 diabetics from different communities of north-western China were investigated using the Chinese CIRS scale. Data analysis shows ideal reliability and validity of the scale, which was published in
Chinese General Practice.
Materials and methods
Study population and data collection
A convenience sampling was used in the study. Patients with diabetes recruited from eight communities in Shihezi City, Xingjiang Uygur Autonomous Region were investigated from December 2013 to May 2014. Shihezi City is a typical corps city in north-western China. The city has 37 Community Health Stations and has been regarded as a model city, despite that it is one of the underdeveloped areas in China. Each Community Health Station has health archive for every resident in the district. Eight communities were selected using a random number table in the study.
The inclusion criteria for participants are as follows: (1) age of more than 18 years old; (2) diagnosis of type 1 or 2 diabetes by professional physicians for more than 3 months; (3) long-term residency in the communities of Shihezi City; and (4) intact ability to perform cognitive and self-care functions.
The exclusion criteria for participants are as follows: (1) gestational diabetes; (2) diabetes combined with cancer; (3) acute diabetes-related complications; (4) limited visual disturbances or physical activity caused by diabetes complication or other diseases.
Participants were recruited by health workers of the selected communities; the workers informed residents with diabetes about the study through telephone communication. A total of 300 residents agreed to participate. Informed residents came to the Community Health Stations in accordance with the predetermined time. Face-to-face interviews were also conducted by our team members, who received unified training, after obtaining informed consent from each participant. The respondents completed the questionnaire on the CIRS and diabetes self-management on their own. During the interview, three residents withdrew from the study because of temporary emergencies; hence, 297 questionnaires were considered valid and used for analysis.
Ethics statement
The study was approved by the Institutional Review Board of the First Affiliated Hospital of School of Medicine of Shihezi University. The study was orally approved by the community committee and administrators of every Community Health Station. Written and verbal informed consents were obtained from each participant. Each individual has the freedom to participate or quit the investigation. The questionnaire was filled out anonymously.
Instrument
Demographic and diabetes-related information
Demographic information includes gender, age, level of education, marital status, and income. Moreover, diabetes-related information, such as type, duration, and therapy of the disease, was collected. Diabetes was categorized as type 1 or 2. Duration means the time the participant was diagnosed with diabetes to the time when he was surveyed. Therapies consisted of non-drug therapy, oral medicine, insulin treatment, and both oral drug and insulin therapies. Family history of diabetes was also investigated. A positive family history of diabetes refers to at least one immediate family member (father, mother, siblings, or offspring) diagnosed with diabetes by a physician [
20].
Chronic Illness Resources Survey
The CIRS in Chinese version [
19] was used to assess the utilization of chronic illness resources by diabetic patients. The scale consists of six dimensions with 19 items, which reflect the sources of support for patients with chronic diseases. The dimensions are as follows: personal, family and friends, health care team, media and policy, neighborhood or community, and organizations. Choices for each item range from “never” (scores 1 point) to “very much” (scores 5 point). The participants were asked to provide their responses according to actual situations. The scores of subscales were determined by computing the means of subscale items, and the total score of the CIRS was calculated by adding subscale scores and dividing by six. High CIRS scores indicate improved utilization of chronic illness resources by diabetic patients. CIRS scores less than 3 indicate non-ideal utilization of chronic illness resources. The Cronbach α coefficient was 0.866 for the CIRS and 0.611–0.851 for the six dimensions.
Diabetes self-management
Diabetes self-management was assessed using the Diabetes Self-Care Scale (DSCS) developed by Wang
et al. [
21]. Six dimensions were generated from 26 items, which cover all aspects of diabetes self-management behavior (diet, exercise, medicine, glucose monitoring, foot care, and dealing with hyperglycemia and hypoglycemia). Response categories ranged from “can’t complete” (scores 1 point) to “complete easily” (scores 5 point). High DSCS scores indicate improved self-management of diabetes. Cronbach α was 0.900 for the scale and 0.710–0.951 for the subscale.
Statistical analysis
EpiData3.1 was used to establish the database. All statistical data analyses were performed using SPSS17.0 software. Descriptive statistics were used to describe the demographic variables and scores of CIRS and DSCS. Numerical variables were depicted as mean±SD, and categorical variables were shown as frequencies and proportion. Student t-test or ANOVA for normally distributed variables and Kruskal-Wallis H test for non-normally distributed variables were used to analyze differences in CIRS scores among the groups. The relationships among demographic variables, diabetes-related factors, and scores of CIRS and DSCS were analyzed by correlational and regression analysis. P<0.05 indicates statistical significance.
Results
Description of demographics
Table 1 shows the demographic characteristics of the participants. Of the 297 participants, 41.40% (123) were men and 58.60% (174) were women. The average age of the patients was 67.67±9.54 years, ranging from 37 to 90 years old. About 45.4% of the patients had elementary school education or less, whereas 29.3% obtained junior secondary education. Most of the participants (85.5%) were married, 2.7% were divorced, and the remaining 11.8% were widows or widowers. About 56.2% of the patients had family monthly income of less than 3000 RMB per member.
Most participants were type 2 diabetics, and only 4% of the patients were diagnosed with type 1 diabetes. The average duration of being diagnosed with diabetes was 9.83±6.54 years. A majority of the participants took oral medicine to treat diabetes. About one-sixth used insulin, and another one-sixth used both oral medicine and insulin. About 4.4% of the patients said they took non-drug therapy. Moreover, 25% of the participants reported that they had a family history of diabetes.
Scores of Chronic Illness Resources Survey and diabetes self-care scale
Table 2 shows the descriptive statistics of CIRS and DSCS scores as well as their subscales. Support from family, friends, and health care team was rated the highest, followed by the perceived support from neighborhood or community as well as media and policy. Conversely, support from personal and organization was rated the lowest. In general, the participants perceived less moderate support. Most of the participants failed to obtain more than three points. For diabetes self-management behavior, the dimensions of taking medicine and doing exercise were scored the highest, followed by the dimensions of dietary therapy and foot care. The dimension of dealing with hyperglycemia and hypoglycemia as well as glucose monitoring were scored the lowest.
Correlation of CIRS and DSCS
As shown in Table 3, six dimensions of CIRS were significantly correlated with total DSCS and its subscales, except health care team and exercise dimensions. Moreover, the total CIRS scale was significantly moderately related to the dimensions of DSCS.
Factors influencing the utilization of chronic illness resources
Univariate and multivariate logistic regression analyses were performed to determine factors influencing the utilization of chronic illness resources. Continuous variables (age, duration, and total score of CIRS) were transformed into categorical variables. The assignment for CIRS was as follows: 0= (CIRS<3.0), 1= (CIRS≥3.0).
Table 4 shows the univariate analysis of the relationship between the levels of perceived chronic illness resources support and socio-demographic variables. Gender was not significantly associated with the CIRS score (P>0.05). Participants aged 60–74 years perceived higher support from chronic illness resources compared with younger and older participants. Education level was significantly associated with the CIRS score (P<0.01). Participants with higher income (more than 3000 RMB) were more likely to perceive support from chronic illness resources than those with lower income (P<0.01). The score of CIRS increased with prolonged diabetes duration (P<0.01). Sophisticated therapies resulted in high level of support from chronic illness resources for the participants. Moreover, CIRS score was not significantly associated with marital status, type of diabetes, and family history of the disease.
Multivariate logistic regression analysis was conducted to determine whether factors obtained through univariate analysis can influence the level of support from chronic illness resources received by the participants. As presented in Table 5, older people perceived more resources and support for chronic illness self-management than younger people (OR, 3.42; 95%CI, 1.19–9.84). Individuals that obtained high school education and college education were more likely to obtain higher CIRS scores than those with elementary school education (OR, 2.61, 3.02; 95%CI, 1.13–6.05, 1.13–8.04, respectively). Income was significantly positively associated with CIRS score (OR, 5.27; 95%CI, 1.86–14.90). Similarly, positive but not significant associations were found in diabetes duration (OR, 1.61; 95%CI, 0.72–3.61) and therapy (OR, 2.37; 95%CI, 0.50–11.30).
Discussion
In recent years, researchers have investigated diabetes self-care or self-management support because it is associated with glycemic control. Interventions mainly focused on individual-centered education, ranging from teaching basic knowledge among diabetic patients to improve their ability and skills by passing on experiences. However, well-performed self-management behavior needs multi-level support, which is affected not only by the personality and ability of an individual at the micro-level but also by the roles and relationships of the individual with his family and workplace or school at the micro-level as well as the economic conditions and culture norms in the society context at the macro-level [
22]. All of these viewpoints are included in the CIRS. To the best of our knowledge, this study is the first to investigate chronic illness resources support among diabetic patients in north-western China.
In this study, the utilization of resources and support for chronic illness self-management was found to be inefficient. The level of perceived support from chronic illness resources in Shihezi City is slightly higher than the data reported in other countries about 10 years ago [
14,
16]. This difference may be due to the level of economic development. In terms of the subscales, participants perceived high levels of support from family, friends, and health care team and low levels from personal adjustment and organizations. In previous studies [
14,
17], the subscales of health care team and personnel were rated the highest, and organization dimension rated the lowest. Hence, the participants in the present study lack self-confidence and are dependent on health workers and relatives. We also found that the performance of self-management behavior assessed by DSCS was undesirable, especially in glucose monitoring and dealing with hyperglycemia or hypoglycemia. Self-monitoring of blood glucose consumes money and technique. Lack of financial and technical support as well as fear of suffering from pain caused by needle stinging may be the reasons for reluctance to glucose monitoring. Moreover, being poor at dealing with hyperglycemia or hypoglycemia reflects crippled diabetes self-management education. Efforts should be made to improve the adherence of the patient to glucose monitoring and skills of dealing with abnormal glycemic control.
Consistent with previous studies [
23] and theoretical framework of the CIRS scale, our correlation analysis showed that CIRS was moderately correlated with DSCS; high levels of support received by the patients indicate improved performance in diabetes self-management. The results also showed that different sources of support induced specific behavior in diabetes self-management. Level of support from neighborhood or community was highly positively related to performance of exercise (
r = 0.66). Improved utilization of support from personal adjustment, family, and friends contributed to rational diet (
r = 0.51). Active atmosphere of exercise in communities can inspire people to participate in physical exercises, and eating habits of people surrounding the diabetics can affect the diet behavior of the patient.
Univariate analysis demonstrated the relationships between demographic factors (gender, age, education, marital status, monthly income, type of diabetes, duration, therapy, and family history) and perceived support from chronic illness resources (Table 4). Multivariate logistic regression analysis indicated the relationships between age, education, monthly income, duration, and therapy with perceived support from chronic illness resources (Table 5). Previous study [
24] reported that females perceived higher support from chronic illness resources than males. Gender was not statistically significantly different. Our results also showed that individuals from 60 to 74 years old obtained higher CIRS scores than younger (<60) and older (>74) patients. This phenomenon could be due to the fact that young patients focus on their work rather than diabetes self-management, whereas old patients may overlook many resources because of reduced energy. Moreover, age of the patients was unevenly distributed. In addition, the univariate analysis indicated that the perceived support from chronic illness resources enhanced with increased education degree, family monthly income, and diabetes duration. In general, better-educated people possess higher ability to obtain various information and will more likely take full advantage of various resources. Furthermore, economic basis determines superstructure, and adequate material support provides opportunities for diabetic patients to have access to resources for diabetes self-management. However, the reason for different CIRS scores in diabetes duration needs further investigation. We also found that the relationship between perceived support and diabetic therapy was nearly statistically significant. This finding could be attributed to the fact that diabetic patients who need to be treated with more complicated therapy will pay more attention to their morbid condition and seek multilevel resources for help.
Of the five factors in the univariate analysis associated with the level of perceived support, only three (age, education, and income) were inputted in the multivariate analysis model. Consistent with a previous study [
25], the present study did not show any statistically significant difference between marital status and perceived support. The association among type of diabetes, diabetes family history, and perceived support was also not statistically significant. Therefore, diabetics younger than 60 or older than 75, poorly educated, and penurious must be given indispensable attention. Furthermore, chronic illness resources should be available to help them to manage diabetes positively and efficaciously.
The strengths of our study are as follows. This study is the first to investigate community diabetes with regard to chronic illness resource utilization in north-western China by using a validated scale. In addition, the study explored the status quo and factors influencing the utilization of resources and support for chronic illness self-management among diabetic patients in north-western China. This study may contribute to interventions for improving the utilization of multilevel resources and self-management among patients with diabetes. However, our study also has several limitations. First, the inference of casual associations between demographic factors and the level of perceived support from chronic illness resources might be limited by our cross-sectional study design. Second, face-to-face interviews of the individuals might result in social desirability, which may affect the respondents’ genuine answers. Third, the investigation was carried out in Shihezi City. Therefore, more cross-sectional studies should be conducted in other areas of north-western China to generalize the results.
In conclusion, this study discovered that utilization of resources and support for chronic illness self-management among diabetic patients in communities of north-western China was not ideal, especially with regard to personal adjustment and organizations. Improved utilization of resources and support for chronic illness self-management conduce to good diabetes self-management. The level of utilizing resources and support for chronic illness self-management increased with age, literacy level, and monthly income. Support from chronic illness resources, ranging from common resources to distal resources, must be given utmost importance to improve diabetes self-management. Similarly, the intervention group should concentrate on young diabetic patients and those who have low literacy level or low monthly income.
Higher Education Press and Springer-Verlag Berlin Heidelberg
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