Experiences of the parents caring for their children during a tuberculosis outbreak in high school: a qualitative study

Tuberculosis (TB) is a chronic infectious disease that seriously affects human health and daily life worldwide [1]. China is one of the 22 countries with high occurrence of TB, and has the world’s second highest number of TB cases, accounting for about 12% of total cases throughout the world [2]. Students have become a high risk group of TB [3]. In 2010, the national network direct reporting system reported that there were 48,961 students suffering from TB, which accounted for 4.94% of the total TB cases. In many Provinces of China, the number of students with TB ranked second just behind farmers and herdsmen. TB that occurred in students with the age of 15–24 accounted for 83.4% of the total students with TB [4]. Clusters of cases or outbreaks of TB have occurred nationally in high schools [5‐7], which not only affects the normal teaching order, but also brings a lot of trouble to the families. Parents of students with TB have to endure pressures from the disease itself, children’s education, employment and life and their own psychological issues. However, many studies only focus on on the psychological problems and intervention approaches of students with TB [8, 9]. There are no reports on the experience of parents caring for their children with TB.

In March 2013, two cases of active TB students were reported in a high school located in the northern part of Shaanxi Province. The cases came to the close attention of the health department. The tuberculosis Prevention Institute of Shaanxi Province promptly organized an emergency response team to conduct the TB screening for all the students in three local high schools and a total of 22 cases of active tuberculosis among students were found. These 22 students were immediately isolated to the local hospital for chemotherapy. Under the guidance of the ERT, the logistics departments in the three schools disinfected the dormitories, classrooms and dining rooms. In this study, we interviewed parents of students with TB and expected to identify the difficulties that were faced during the caring process of their children. As a communication bridge between local Center for Disease Control (CDC) and parents, researchers in this study provided emotional and information support through the in-depth interviews.

The ZBI scale assessment showed that personal burden and roles of the score was (30.32 ± 6.92) and (11.23 ± 5.19), respectively. The total burden score was (51.50 ± 12.73). The personal burden score was significantly higher than the role of score (p < 0.01), indicating that the parents (caregivers) had significant anxiety, stress and other psychological feelings. There were 18 parents (82%) under the moderate or severe burden of care and a few parents had minor burden of care (Table 3). The results also showed that the burden of parents had no differences in gender (t = 0.44, p > 0.44), degree of culture (F = 0.7, p > 0.7) and the Native place (P > 0.24), which may be due to the small sample size included in this study (Table 4).

After the interview data were analyzed, three main findings were obtained: (1) the parents lack appropriate knowledge on TB; (2) the parents had high psychological pressure; and (3) the daily life of the parents was impacted (Table 5).

The identification of TB cases in the high school resulted in much stress and anxiety for many parents. Based on the interview and the ZBI score, we found that parents had high psychological pressures. Many parents had anxious emotions and choked with sobbing during the interview. The parents were mostly worried about the children’s health and disrupted high school studies. The majority of the parents hoped that the children did not miss the studies during the treatment, which is particularly evident for the parents of more senior students in the high school. According to the TB control and treatment guidelines, the contagiousness of TB disappears after 2–3 weeks of regular treatment, and the patients can participate in social activities. However, in order to prevent the spread of the epidemic and avoid the adverse emotions of other students and their parents, most schools require students to be completely cured before returning to school [11]. Thus, the students face the situations of missing studies in the school. Yet, it is well known that the national college entrance exam is very competitive and is the most important event for the entire family. The most critical studying period for the exam is in the high school [12]. Studies are missed and the students’ performance in the national exam will be impacted due to the TB treatment. Thus, the students with TB may not be accepted to the ideal university. On the other hand, considering the importance of the national exam, the school may allow some non-contagious students to continue their studies in the school. However, studying in the school during the period of oral drug therapy, will lead to insufficient rest. Thus, the parents face a dilemma: having rest at home or continuing to study at school.

In addition, China has a saying of “ten TB cases, nine dead”, which deeply influences people’s thought [13]. People are still in fear of TB. What the parents are mostly concerned is whether or not TB can be cured. Parents are worried that inadequate treatment of the disease affects the medical qualification for the college entrance. They are afraid that the disease history of TB may become an obstacle of their children’s future education and employment [14]. Also, because TB is contagious, people have a prejudice against TB patients [15]. Psychological pressure of the students and the parents also comes from the alienation and even discrimination from their friends [16]. Therefore, they use negative approaches, e.g., self-isolation and concealing of the disease to reduce the adverse effects. However, hiding disease because of stigma may lose the help from their relatives and the community and is not conducive to the prevention and control of TB.

Caring activities also increase the burdens of the parents. After their children get TB, parents have to adjust their working time and reduce their entertaining activities in order to take care of their children in the hospital. Currently, China is in the “family planning policy”, the number of children in a family is smaller. Parents take much care of each child. Meanwhile, the performance in the college entrance exam is the most important criteria to evaluate and select talented persons. The school often neglects the cultivation of students’ comprehensive capability [17]. The high school students generally have poor self-care ability. Therefore, parents have to take care of their children in hospital. On the other hand, under the influence of Confucianism, traditional families follow the intergenerational co-residence structure [18]. The parents of students are under the double burden of taking care of their children and the elderly persons. Therefore, parents often feel everywhere at once and lack of both time and energy.

During the investigation, we found that parents of the students lacked the knowledge on TB. Other Studies have shown that awareness on the prevention of infectious disease is relatively low [19]. When the suspicious symptoms such as cough, hemoptysis appeared, they cannot be aware of TB infection. In recent years, active public education of TB has been enriched and expanded [20]. Due to the lack of interest in the knowledge about TB, TB prevention and control is difficult [21]. Lack of the knowledge on TB symptoms, territorial management and free policies often miss the best timing of treatment, leading to delays in diagnosis of the disease [22]. Most of the interviewees in this study are from rural areas. They have low educational level and weak comprehension ability. Coupled with the occlusion of information channels, parents learn TB mainly from the misconceptions of the family members or relatives [23]. The parents cannot provide guidelines to the children for prevention of TB. Medical screening, diagnosis and treatment are usually a passive process. This study also found that only 5 parents (5/22) thought that the disease brought negative economic issues. After the outbreak of TB, local government has committed to the implementation of cost-free policy for patients. However, some families are still facing temporary economic difficulties due to the medical cost before reimbursement, extra nutrition support and decreased income caused by reduced working time.

Our suggestion has a profound significance for future research. It can be a reference for the government to make the support policy. In the follow-up study, we will be conducting a similar study in the city’s parent group, discussing differences of care experience between urban and rural parents. At the same time, we will focus on the healthy education and family counseling as the main research direction, in order to identify the new mode of response to infectious diseases.

In this study, we obtained a deeper understanding of the actual situations faced by parents of students with TB through field investigation and personal interview. We also solved many problems immediately for the families. Relevant policies of TB treatment to parents are required, in order to strengthen the confidence of parents to prevent TB. Being as a bridge connecting patients with local CDC, we reflected the family economic difficult problem to the local CDC, prompting the local health department to carry out the policy of free of charge during the treatment in hospital. This largely reduced the economic burden of parents.

Although parents face many difficulties, they can still make self-adjustment and provide the best care for their children. When a similar outbreak occurs in the future, authorities should not only implement the treatment measures, but also focus on solving the psychological problems of patients and their families. The authorities should also provide information resources to prevent the spread of TB.

Shaoru Zhang is a professor in the College of Medicine at the Xian Jiaotong University. Her main research fields are the primary health care, infectious disease and public health.

Wei Ruan is a Master’s student of the Department of Nursing, Xian Jiaotong University. Ruan is specializing in public health nursing and her research topic is tuberculosis prevention among undergraduates.

Yingqun Li, Xiangni Wang and Xing Wang are Master’s student of the Department of Nursing, Xian Jiaotong University. They are specializing in public health nursing.