Social support received by multidrug-resistant tuberculosis patients and related factors: a cross-sectional study in Zhejiang Province, People's Republic of China

Introduction

The People’s Republic of China is one of the countries with highest tuberculosis (TB) burdens in the world, and it registered the second-largest number of TB patients in 2014, globally.¹ Located in southeastern China, Zhejiang Province has a relatively low reported incidence of TB within the country. However, there are still >30,000 TB cases reported each year in the province because of the density of its population.² Furthermore, the epidemic of multidrug-resistant tuberculosis (MDR-TB, defined by resistance to the two most commonly used drugs in the current four-drug regimen, isoniazid and rifampin) has posed considerable challenges for TB control in the country and the province.^3–5 According to a recent provincial TB drug-resistance survey, the total rate of MDR-TB among TB patients was 6.0%, which could be estimated to be ~2,000 MDR-TB cases each year in Zhejiang Province.³

TB usually strikes vulnerable members of the population, such as the poor, homeless, undernourished, or migrant population.^6–8 Unfortunately, the huge cost of the disease can incur catastrophic expenditures for individuals and households, leading to impoverishment, inadequate use of health services, suspended treatment, and increased spread of the disease.^9,10 Moreover, the infectious nature of TB may generate social isolation and stigma in the community, which can have a negative psychological impact on TB patients.^11,12 The situation is even worse among MDR-TB patients because the treatment is more complicated, the regimen is much longer, the results of infection are more severe, and the cost is much higher.^1,4,13

In 2007, Zhejiang Province initiated an MDR-TB prevention and control program supported by the Global Fund and later established a local MDR-TB control program.^14,15 As part of this program, TB patients’ sputum samples were cultured in the laboratory of the designated hospital at the county level, and culture-positive strains were transferred and tested for drug susceptibility at the municipal TB hospital. If the TB patient was diagnosed as an MDR-TB patient, he or she was treated at specialized municipal TB hospitals with the standard chemotherapy regimen recommended by the World Health Organization. Local centers for disease control and prevention undertook the tasks of patient tracing, information registry, and follow-up arrangements. The community health service center was in charge of patient follow-up, health education, and psychological support. The program provided each patient with ~15 dollars per month as a nutrition and transportation subsidy.

Social support is recognized as an effective way to help TB patients in completing their treatment.^8,16,17 Social support is defined as “information leading the subjects to believe that they are cared for and loved, esteemed, and members of a network of mutual obligations”.¹⁸ Many previous studies have attempted to measure the amount of social support available to non-TB patients and disaster victims, finding a positive impact on stress relief, treatment compliance, and the establishment of beneficial behavior.^19–22 In the People’s Republic of China, studies have measured the social support available to TB patients during their treatment period.^23–25 However, few studies have measured social support specifically for MDR-TB patients, while the factors influencing social support acquisition continue to remain unidentified. Here, a cross-sectional study was initiated to assess the social support received by MDR-TB patients who were undergoing treatment and follow-up support in Zhejiang Province and to identify the factors affecting social support among its respondents.

Methods

Participants

A cross-sectional survey of MDR-TB patients was conducted from July 15 to August 15, 2014, in Zhejiang Province. The inclusion criteria were 1) patients who started their treatment during January 1, 2009, and June 30, 2012, in Zhejiang Province, and participants who had ended treatment at the time of the survey, so that their social support score could be measured throughout the treatment period; 2) MDR-TB patients who were undergoing follow-up through the provincial MDR-TB control program during the same period; and 3) MDR-TB patients or their caregivers who were able to clearly understand the contents of the questionnaire. A total of 307 eligible MDR-TB patients were contacted, of whom 48 patients or their caregivers could not be reached due to changes in telephone contact numbers or because they had moved to other provinces, 26 patients died before they could be contacted, and 13 patients declined to be interviewed. Finally, 220 MDR-TB patients participated in the study.

Study design

A structured questionnaire was conducted, containing items related to demographic characteristics, attributes of MDR-TB disease, attitudes toward the disease, help from the health service, and the social support rating scale (SSRS). The scale was first designed and introduced by Xiao in 1994²⁶ and has shown a high degree of reliability and validity when applied to measure social support in the Chinese population in previous studies.^22,25–29 The scale consisted of ten items that measured three domains of social support: subjective support (four items), objective support (three items), and support-seeking behavior (three items). Subjective support refers to the social relationships that the individual believes he or she can rely on, and the perceived level of support from surrounding persons including family members, neighbors, friends, colleagues, and other people. Objective support refers to the actual support gained from social surroundings. Support-seeking behavior reflects the pattern of behavior utilized by an individual when he or she seeks support.³⁰ Scores of the ten items were added together, and the total score ranged from 12 to 66, within which the subjective score ranged from 8 to 32, the objective score from 1 to 22, and the support availability from 3 to 12. A higher score reflects stronger social support. The Cronbach’s alpha coefficient for the SSRS in the current study was 0.82.

The investigators from the provincial and local Centers for Disease Control and Prevention were trained with unified criteria. Two investigators went to patients’ homes and conducted the face-to-face survey. One investigator was responsible for interviewing respondents, and the other supervised the whole process and checked the returned questionnaires. The questionnaires were collected and then the consistency was double-checked by the researchers at the provincial level. Eight questionnaires were excluded for inconsistency between the questionnaire items. Finally, the data from the 212 valid questionnaires were entered into a database for analysis.

Statistical analysis

Descriptive analysis was used to assess the basic demographic characteristics, disease characteristics, and social support score. An Independent Samples t-test and one-way analysis of variance were used to compare different social support scores among the different groups. The SSRS was set as the dependent variable, and the participants’ demographic characteristics, disease features, and attitudes were set as the independent variables. The annual family income was stratified into three groups according to the province’s income level during the study period. A multiple linear regression model was developed based on backward elimination to identify factors relevant to MDR-TB patients’ SSRS scores. The inclusion and exclusion thresholds for the variables were 0.05 and 0.10, respectively. Data analysis was performed using SPSS, Version 13.0 (SPSS Inc., Chicago, IL, USA). A P-value of <0.05 was considered statistically significant.

Ethical consideration

The study was approved by the Ethical Review Board of Zhejiang Provincial Center for Disease Control and Prevention. Informed written consents were obtained from the respondents, and their private information was carefully protected.

Results

Sociodemographic characteristics of the participants

Among all 212 participants, there were more male MDR-TB patients than female patients (69.81%>30.19%), which was representative of the sex distribution of TB patients in the province. Most of the participants were native residents, and 47 (22.17%) patients were from other provinces or other prefectures within the province. The age groups of 40–59 years and 20–39 years accounted for 43.87% and 31.13%, respectively, consisting of more than three-fourths of all the participants. The participants’ education level was relatively low with 164 (77.36%) patients who had only attended middle school or primary school or had received no education at all. Farmer (25.47%) and worker (22.64%) groups were the two most common occupations of the participants. Married patients accounted for >70% of the total, and about half of the participants’ families had two to three family members. Approximately 52% of the participants’ annual family income was between 10,001 and 50,000 Yuan (1,640–8,197 dollars), which was the middle level of all the participants (Table 1).

Table 1 Sociodemographic characteristics of survey respondents in Zhejiang Province, People’s Republic of China, in 2014 Note: a1 dollar =6.5 Yuan (approximately).

Social support scores of the participants

The average SSRS score of the 212 participants was 32.56±7.86, consisting of the average scores of subjective support (20.36±5.42), objective support (6.66±2.66), and support-seeking behavior (5.53±2.05).

Participants’ social support scores and sociodemographic characteristics

The married MDR-TB patients had significantly higher average SSRS scores than the single, widowed, and divorced participants, and the scores of subjective support and objective support also showed the same pattern (P<0.01). Patients who had more family members tended to have significantly higher SSRS, subjective support, and objective support scores (P<0.01). The patients whose annual family income was ≥50,001 Yuan had significantly higher SSRS, subjective support, and objective support scores than the other two groups (P<0.01). The 40–59-year age group had a higher subjective support score than the other age groups (P<0.05; Table 2).

Table 2 Social support scores in different sociodemographical groups among survey respondents in Zhejiang Province, People’s Republic of China, in 2014 Notes: aOne-way analysis of variance tests. b1 dollar =6.5 Yuan (approximately). Abbreviations: SD, standard deviation; SSRS, social support rating scale.

The social support scores among participants with different disease features and attitudes

The groups with different treatment histories, disease complications, and difficulty moving during treatment showed no significant differences in SSRS, subjective support, objective support, or support-seeking behavior (Table 3).

Table 3 Social support scores among participants with different disease features and attitudes, Zhejiang Province, People’s Republic of China, 2014 Note: aOne-way analysis of variance tests. Abbreviations: SD, standard deviation; SSRS, social support rating scale; MDR-TB, multidrug-resistant tuberculosis.

The participants who objected to disclose that they had the disease had significantly lower SSRS and subjective scores than those who did not object (P<0.05). The participants who felt that their health workers were helpful had significantly higher scores than the other two groups in all domains of social support (P<0.01). If the patients felt that the government’s financial subsidy was helpful, they tended to have higher SSRS and subjective support scores (P<0.01; Table 3).

Multivariate analysis of factors associated with SSRS scores

The R² coefficient of the final multiple linear regression model was 0.43 (P<0.01). Variables of marital status, occupation, number of family members, annual family income, difficulty moving during treatment, objections to disclose that they were MDR-TB patients, and feeling helped by health care workers were statistically significant in the model. Patients who were single, widowed, or divorced had lower SSRS scores than those who were married (P=0.000 and 0.001). Compared with patients who were retirees, resident manufacturing workers had a higher SSRS score (P=0.024). MDR-TB participants whose family members numbered four or above had higher social support scores (P=0.000). Greater annual family income (≥50,001) was associated with the higher SSRS scores of participants (P=0.014). Participants who did not object to disclose that they were MDR-TB patients tended to receive more social support (P=0.010). Patients who felt they had perceived moderate and no help from their health care workers had significantly lower SSRS scores than the other patients (P=0.007 and 0.014; Table 4).

Table 4 Multiple linear regression model of related determinants of social support scores among survey respondents in Zhejiang Province, People’s Republic of China, 2014 Abbreviation: MDR-TB, multidrug-resistant tuberculosis.

Discussion

The social support scores of MDR-TB patients in the current study were lower than the national average level of 34.56.²⁶ The scores were also lower than that among those who did not have a TB disease in other studies.^20,21,27,28 The SSRS scores of MDR-TB patients in our study were lower than those reported for TB patients in other recent domestic studies of social support among TB patients (the score ranged roughly from 32 to 36) and did not differ from the results of previous studies on MDR-TB patients.^{23–25,31–34} Limited social support was an important risk factor for nonadherence to medication regimes and treatment.^6,25,35,36 The results indicate that MDR-TB patients may lack social support from their surroundings, including their communities, family members, and relatives. MDR-TB patients may be classified as one of the most vulnerable population groups.

Family is a reliable shelter for the MDR-TB patients, upon which they can depend during treatment. Family members are often best suited to offer emotional and financial support to patients.^16,37 The results of the current study showed that patients who were married and had larger families had higher social support, subjective and objective support scores than their counterparts. Studies have also shown that financial assistance is essential for TB patients to successfully finish the treatment.^8,16 Patients in families who earned more income per year tended to receive more support than those in the current study. The People’s Republic of China continues to face the challenge of an aging population and has the largest population of the elderly in the world.³⁸ Retirees had lower SSRS scores than active workers in our study. Due to the increasing burden of care, retired MDR-TB patients may receive less social support due to lack of caregivers. The one-way analysis of variance showed differences in subjective support scores among patients >60 years, <19, 20–39 years, and 40–59 years old. Other factors, such as sex, inhabitation, and education level, had no significant relationship with the amount of social support received.

Because MDR-TB is a severe disease, treatment history, complications, and physical activity were not significantly associated with the reception of social support among MDR-TB patients. Other clinical features such as sputum smear results (positive) and symptoms (cough and cough sputum) were almost the same among MDR-TB patients, so influence on social support reception was also limited. MDR-TB patients underwent longer treatment periods and experienced more serious side effects and physical difficulties. Caregivers may also lose confidence during treatment, which may contribute to reduced social support.^25,39

Fears over TB transmission, becoming the target of gossip, and discrimination from the community are believed to be the causes of patient self-discrimination.¹² Attitudes, such as objecting to disclose the status of their disease or fear of contact with others, were found to likely block channels of outside social support.¹⁶ In the current study, the patients who did not object to disclose their disease status had more subjective support and SSRS scores. This may suggest that such groups of patients had been accepted by the surrounding individuals and the community who could offer support. The provision of health services is also a very important source of support for TB patients.^16,17 Patients felt very supported when they interacted with doctors, nurses, and health promoters.^16,37 The current results indicate that MDR-TB patients who felt supported by health care workers tended to receive more social support, which indicated the important role of health care workers.

Limitations

The current study had some limitations. The MDR-TB respondents were only from Zhejiang Province and were not representative of all MDR-TB patients. The lack of control groups hindered comparisons with other population groups. Although the majority of MDR-TB patients were interviewed, some patients died or lost contact before the study was conducted, which may have contributed to a loss of relevant information and caused the selection bias leading to overestimation of the social support. The study had not measured the adherence of participants and therefore prevented drawing conclusions on the relationship between social support and adherence in the current study.

Conclusion

This study indicated that MDR-TB patients in Zhejiang Province lack sufficient social support. The MDR-TB patients should be considered a part of the population requiring social protection. The social support received by patients may be associated with the sociodemographic status of marriage, family size, and family income. Patients who were not married, had smaller families, and had low family income tended to receive less social support, showing that family harmony could be an important source of social support. Compared with the patient group, resident manufacturing worker, the retired MDR-TB patients may require more social support. Self-isolation by patients was also identified as an obstacle to social support from the neighbors and communities in our study. Health care workers were found to play an important role in supporting MDR-TB patients and helping them finish treatment.

Acknowledgments

This study was supported by Zhejiang Provincial Science and Technology Major Project (2014C03034), Zhejiang-National Committee of Health and Family Planning Co-Sponsored Project (WKJ-ZJ-07), and Zhejiang Provincial Medical Research project (2016RCA007). We would like to thank the staff from local centers for diseases control and prevention (CDCs) for their help of field survey.

Disclosure

The authors report no conflicts of interest in this work.

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