The importance of bingyou in illness experience : social functions of the ward and bingyou relationships in management of Chronic Kidney Disease among rural people in Henan Province, the People's Republic of China

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The importance of bingyou in illness experience

Social functions of the ward and bingyou relationships

in management of Chronic Kidney Disease

among rural people in Henan Province,

the People’s Republic of China

Sanne Danielle Gommers

MSc Medical Anthropology and Sociology

Supervisor: prof. dr. Ria Reis

Student ID: 11584874

August 18, 2019

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International Kidney Health Day at the First Affiliated Hospital of Zhengzhou University

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Acknowledgements

First of all, to all my participants, thank you for sharing your stories with me.

To Hongxia, thank you for welcoming me to your research, to Zhengzhou, and even to your family; I feel honored to be your first student, and even more so to be your friend – laughing together about the endless surprises was one of the best parts of this experience.

To Wenjiao, who succeeded at the difficult task of helping me to communicate without communicating for me; this research is as much your achievement as it is mine, thank you. My friendship with you is one of the best things I found in Zhengzhou.

To my friend Shuchen, thank you for your hard work transcribing the interviews; without you could not have written this thesis.

To professor Lou, thank you for inviting me to your department so generously. How you welcomed me to China and to your research family means a lot to me.

To all the leaders and colleagues at the Nephrology department, thank you so much for welcoming me and helping me with my research. It has been an honor to work with you.

To Ria, thank you for all your enthusiasm and wisdom; I have learned so much in the past two years and I am very grateful for that. Thank you for being my mentor and for teaching me that we all take on many different identities as we go.

To Xinyu, who has been teaching me about all things China throughout our friendship, and who was the first one to welcome me to Zhengzhou, 谢谢.

To my dear friends, thank you for supporting me both in my enthusiasm and during my struggles, I am so lucky to have you all by my side.

To my parents and sister, who have supported me with so much faith and enthusiasm from the very beginning; thank you for teaching me to embrace and enjoy life in all its

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Abstract

This research has focused on experiences of Chronic Kidney Disease (CKD) among people from rural areas who were hospitalized at one of the Nephrology wards at the First Affiliated Hospital of Zhengzhou University (FAHZU) in Zhengzhou, the People’s Republic of China. In semi-structured interviews I talked with them about their experiences with CKD to identify the issues that could benefit from future eHealth technology.

From the way participants described their disease and especially its impact on their lives it became clear that the main issues were financial pressure and emotional pressure. Both were strongly related to family structures and responsibilities, and my participants also explicitly related the issues to coming from rural areas.

Most of the emotional pressure came from the perceived responsibility to protect family members. They worried that knowing about the disease, their children would give up work or study to take care of their sick parent, their parents would worry too much, and that nobody would want to marry children of a sick person. Therefore, people felt they needed to avoid talking about their disease or downplay the severity of it. On the ward, on the other hand, CKD seemed to be the main topic of small-talk among bingyou, friends who have the same disease. The ward and the bingyou relationships formed at the ward serve an important function in the psychosocial part of disease management by offering a social space where people can talk about their disease openly, and also as an important source of information about the disease.

People from rural areas face challenges that could benefit from technology, such as lack of reliable information, the long distances to adequate health care, and the high financial burden of regularly being hospitalized and travelling to the big city. However, by taking over some of the clinical functions of the ward, such technology might also impact psychosocial functions of the ward, such as the relationships between bingyou.

Since the ward and the bingyou relationships formed at the ward play an important role in the psychosocial part of disease management for the participants in my research, I recommend that this will be taken into account in the development of future eHealth technologies, so that they can create room for the bingyou of the future.

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1 Introduction and Research Questions

Chronic Kidney Disease (CKD) is a global public health problem, with a reported prevalence of 8-16% worldwide and 10.8% (an estimate of 119,5 million people) in the People’s Republic of China (hereafter China) in 2012. These numbers are expected to rise rapidly, especially in developing countries with an aging population, such as China. (Jha et al. 2013; Zhang et al. 2012)

CKD is a progressive and irreversible condition. It can be defined as a gradual loss of kidney function, or in medical terms characterized by “a reduced glomerular filtration rate, increased urinary albumin excretion, or both.” (Jha et al. 2012) CKD is categorized into five stages.

Kidneys normally filter the blood and remove excess fluids and waste products from the body in the form of urine. They also produce hormones that control blood pressure and the production of red blood cells, and produce vitamin D. Loss of those functions can result in symptoms such as anaemia, high blood pressure, itching, nausea, fatigue, muscle

cramping. In its early stages, CKD is often asymptomatic, so people are usually only diagnosed after significant reduction of kidney function. Measuring creatinine levels can indicate how well the kidneys filter. In the last stage, renal failure, the function of the kidneys is so minimal that it needs to be replaced, either through dialysis (a machine performing the kidney’s function) or kidney transplantation. (American National Kidney Foundation 2018; Nierstichting 2018)

As damage to the kidneys is irreversible, early diagnosis and management of the disease are crucial to prevent progression, and to prevent comorbidities such as diabetes, hypertension and heart disease. A crucial part of disease management of CKD is self-management, which includes lifestyle and nutritional changes and medication

adherence. This requires active participation of the patient. (Diamantidis and Becker 2014; Nierstichting 2018) However, many people with CKD are undiagnosed or unaware of ways to manage it and prevent progression. (Jha et al. 2013) Therefore, more awareness and support to engage in self-management are necessary.

My research aims to contribute to the qualitative part of the PhD project of Hongxia Shen. She works within a broader research into eHealth at the department of Public Health

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and Primary Care at the Leiden University Medical Center (LUMC), and her PhD takes place in collaboration with the First Affiliated Hospital of Zhengzhou University (FAHZU), where she has previously worked as a nurse. With this PhD project, she is exploring the possibilities of eHealth to support self-management and slow down CKD progression among people with CKD in Henan Province, China.

Researching the current experiences, needs and expectations of local stakeholders was identified as a key element of the research preceding the design of any new eHealth tool to support self-management. To contribute to this as an anthropologist, I wanted to know more about how these people themselves perceive self-management and their role in it, and about the social context of the biological concept ‘CKD’, in line with Kleinman (1978).

From January until April 2019 Hongxia and I stayed in Zhengzhou, where we each conducted our own research at one of the Nephrology wards at the FAHZU. During my research I conducted informal observations and interviewed 25 people at this ward.

During interviews I talked with the participants about a range of topics, including what their disease is, how it affects their life, their reasons for being in the hospital, daily activities to manage the disease, the roles of relatives, difficulties related to the disease, information resources, and responsibilities.

Chunming, one of my first participants, started to cry when our conversation turned to how she could not talk about her disease in the village. Many later participants also cried during the interviews. Initially I was afraid that I might be doing more harm than good by stirring up all these strong emotions, but almost all participants explicitly told me that they were happy to get the opportunity to talk about these things and tell their story. I became interested in when and why people would or would not talk about CKD. I started to observe a contrast between how private the disease needed to be in the villages of some

participants, and how public it was at the ward, which offered near to no privacy. Soon I also started to realize that talking – and not talking - about CKD was in itself an important part of my participants’ experiences with the disease.

I had expected that the social dimensions of CKD would be an important part of the illness experience, and that family would play an important role in disease management. What I was not expecting, was that an important part of this social dimension would take place at the hospital ward, and that some of the most important social relations in this process were those between patients.

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In this thesis, I will discuss how talking and not talking about CKD is part of the illness experience of rural people with CKD in Henan Province, China, and how a future eHealth technology might impact that. To do this, I will aim to answer the following sub-questions:

- In which contexts do people talk about CKD?

- Which functions does talking or not talking about CKD have in these contexts? - In which ways is CKD talked about in these contexts?

- What can we learn from this in the context of a potential future eHealth technology?

The first three subquestions are more descriptive, and will be answered by an analysis of my fieldwork data, whereas the last one is hypothetical, and will be answered in the discussion, based on my findings.

After a discussion of the research setting, methodology and ethical considerations, and theoretical framework, I will present my findings, followed by the conclusion and discussion.

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2 Research Setting

My research took place in Zhengzhou City in the People’s Republic of China. Zhengzhou is the capital of the historically poor Henan province in Central China. It is a fast-growing city with over 6 million urban residents, famous for being a

transportation hub where trains, flights and highways connect people from all over China. (Zhengzhou Government 2018)

With 10.000 beds, the First Affiliated Hospital of Zhengzhou University (FAHZU) is one of the biggest hospitals in China (and the world). I did my fieldwork at one of the three in-patient Nephrology departments of the FAHZU.

During my fieldwork, I lived in the hospital district, and got to experience how the entire district caters to the needs of people visiting and staying at the hospital. The streets around the hospital are filled with stores selling anything people need in the hospital; on the street corners, especially when it was getting dark, there are people advertising rooms to stay for the night and approaching passers-by; there were food stalls in and around the hospital grounds, and even in the ward itself, with people entering the ward to sell food three times a day.

Figure 1: Location of Zhengzhou in China (Google Maps 2018) Figure 2: Location of First Affiliated Hospital of Zhengzhou University in Zhengzhou (Google Maps 2018)

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3 Methodology and Ethical Considerations

My research-related activities included: recruiting participants, conducting formal interviews and focus groups, having discussions with my colleagues, and attending meetings, events and lectures about kidney health. During most of these activities, I also had informal conversations and opportunities to observe. The primary focus of my research was on people with CKD who are treated at the First Affiliated Hospital of Zhengzhou. To better understand their experiences, I also included a nurse at the Nephrology department of the FAHZU, and family members of people with CKD. In total I interviewed 25 people; 19 people individually (15 people hospitalized at the ward, 3 relatives, 1 nurse), 1 couple, and 4 people with CKD in a focus group.

As my project was part of Hongxia Shen’s PhD research project, we regularly discussed our plans, practicalities, research methods, feasibility, strategy, research objectives, the context of our research (the ward, but also the hospital, Zhengzhou, and China as a whole), cultural and linguistic differences, and ethical considerations.

3.1 Access to the field

Hongxia and I had official permission from the Research Department to conduct the research at the FAHZU. Having worked at the FAHZU, Hongxia already had connections at the hospital that helped us to gain access to the field. During the first weeks, we spent a lot of time introducing ourselves to people. These people included Hongxia’s supervisor

professor Lou at the Nursing Department, the master students of professor Lou, the leader of the Nursing Department, the nursing leader of the Nephrology Department (where we did our research), and the nurses working at the Nephrology Department. It was important to make formal introductions to leaders, who were usually rather busy, so we also spent significant time waiting and looking for them. This also allowed me to observe and meet other people who were working for these leaders.

Navigating bureaucracy was a challenge sometimes. When I had been in Zhengzhou for one month and had just completed my first few interviews, it was decided that my research would need to be approved by the ethical committee of the hospital, and by a special committee appointed by professor Lou. To make sure my research would not

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endanger the ‘safety of China’, they needed to make sure that I would not talk or publish about any politically sensitive topics, and that if I did, they would not be held responsible. Participating in this bureaucratic procedure turned out to be very confusing and time-consuming, but interesting as well. I had to stop my interviews for three weeks, which caused a significant delay in my research planning, so I decided to narrow down my research question to focus mainly on people with CKD, and to include only a few relatives to

complement the data. After three weeks I received the ethical approval and resumed my research activities.

3.2 Local research scene

Getting used to the research scene and the working environment in Zhengzhou was a very interesting experience. I started to realize that I needed to see the research process itself as part of the local context as much as I was trying to do with the phenomena I was studying. Most meetings and activities were organized in a very flexible and ad-hoc manner, and it was very difficult or even impossible to make concrete plans more than one day in advance.

Whenever we wanted to discuss something, or ask somebody for help, we would usually have dinner together to get to know each other first. As Hongxia and I lived in an apartment together, our place became a regular meeting place for our team, which also included Wenjiao Wang, who helped me during the interviews, and Shuchen Wang, who helped me transcribe my interviews in Chinese.

Wenjiao, a master student of Nursing (under professor Lou), volunteered to help me with the language during my research. Financial compensation for her time was considered very inappropriate, so we agreed that it would be an opportunity for both of us to learn from each other (about research and research methods, and about each other’s languages), and that I would also help her to translate her articles to English. Soon, Wenjiao’s role became much like that of a key informant. During our afternoons and evenings translating the topic lists, we also discussed the content, best ways to ask questions, how to recruit participants, etcetera. Our conversations continued throughout our afternoons in the hospital, and during our free time as we became good friends.

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3.3 Recruiting participants

In some ways, the recruitment process almost felt like I was doing a hospital

ethnography; slowly becoming part of the ward, people starting to recognize me, the casual greetings, short informal talks in the hallways. However, given the relatively short time I spent at the ward I would not claim to have done a hospital ethnography in the

conventional sense of the term.

As neither Wenjiao’s schedule, nor the schedules of the people at the ward allowed for scheduling interviews, we arranged everything ad-hoc. To avoid the mornings (when everybody at the ward was very busy giving and receiving treatments), we usually went to the ward after lunch time, and then approached people and interviewed them directly.

For the first ±5 interviews, Wenjiao and I asked nurses to introduce us to patients. Although this gave us legitimacy, we remained worried that people felt pressured into joining us, and we also did not want to add to the high workload of the nurses.

Therefore, we started to approach people by ourselves. Sometimes, people we had spoken to before would introduce us to other patients and relatives in their room or in the corridor. With this approach, people seemed more relaxed, more comfortable to say yes or no, and more comfortable to ask questions.

Participants seemed to have several motivations to participate. Explaining that I was a student also seemed to create more understanding for what I was doing and willingness to participate; some commented that their own child was also a student and that they would therefore love to help me. Some people also participated out of curiosity because they had seen me walk around and were eager to talk to a foreigner; with my appearance and no other foreigners around I really stood out, and for many people I was the first foreigner they ever met or spoke to. Some people wanted to ask me about CKD treatments abroad;

sometimes this had me wondering who was really interviewing whom. Some people had heard from others that it was nice to talk to us and also wanted to share their story. Most people were quite bored waiting for results so some might also have participated simply for entertainment.

One challenge in the recruitment process was how to deal with privacy – or rather the lack thereof. The ward where we worked feels like a public space: there are many people everywhere, people (both patients and relatives) stay in beds in the corridor, and it

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seems to be generally accepted that people listen in on other people’s conversations as well as consultations with doctors and nurses. I wanted to avoid bothering people, but my (Dutch) ideas about privacy were not useful in this setting. To deal with this I decided not to approach people who seemed to be in relatively private moments, for example with their back turned towards the corridor. On the other hand, when people were already interacting with me, or at least facing the corridor or curiously staring at me, I usually concluded that it would be okay to approach them.

The participant group consisted of people with different ages, who came from different parts of the province. After noticing that a larger part of the participants were women, I purposefully recruited men to participate, which led to a balanced ratio at the end of the fieldwork. All of the participants came from rural areas and were hospitalized at the ward. Given the informal and ad-hoc process of recruitment, it was not always possible to determine in advance whether people had been formally diagnosed with CKD, so a few participants turned out not to have any definite diagnosis yet, or to be hospitalized for another kidney disease. In these cases I only included relevant information that was not specifically related to the disease itself. Most of the participants had been formally diagnosed with CKD, with varying stages of the disease.

3.4 Interview location

The interviews took place in our ‘office’; the on-call room of one of the doctors, who kindly offered to let us use it. It had a door that we could close, some chairs, a desk, a bunk bed, and a window. Compared to the ward it was a very quiet and private place, and it felt almost strange to take people there. However, most participants seemed to appreciate this, and many ended up expressing sensitive topics and emotions that I highly doubt they would have shared with us had others been present.

The interviews formed an interesting context within the hospital ward. On the one hand, they were very much part of the ward, and on the other hand they were also separated from it – literally, by a closed door.

Initially I had been concerned about using the on-call room at the ward as interview location. I worried that interviewing people in the midst of a hectic hospital might not create a relaxed environment. I also worried that it would shift the focus of interviews to

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the biomedical perspective on daily life, and that people might tell me what health care providers would want to hear. Although the latter might have been the case, I realized that some of my other concerns were very much based on my own (Dutch) ideas of privacy and hospitals.

As there was no privacy at this ward, people were constantly surrounded by their own relatives, other patients and their relatives. Conducting the interviews in a room with a closed door therefore offered an environment that was relatively very private, even more so because Wenjiao and I were strangers. Several people explicitly mentioned this when they thanked us for the opportunity to talk about their experiences.

Being in this different hospital setting, I had to reinterpret the interview setting as well; and within this context, our office was actually an extremely private space, clearly more so than the rest of the ward (where people regularly listen in on each other), but also more so than the village (where everybody talks about one another), and maybe even more than the house (where family members are). It would actually have been extremely difficult to find a more private space.

3.5 Interview content

When people agreed to do a formal interview, we would go to our office, where we explained again what we were doing, went through the informed consent and checked if the participant really wanted to participate, and whether we could record the interview. Initially we were using written consent forms, but when we noticed that many people were confused by the formality of writing down their signature, and that many people were illiterate, we stopped using the forms and obtained verbal consent from all participants.

To ensure privacy of all participants, no names, birth dates and other personal details were recorded. All names in this thesis are pseudonyms. Participants were offered a small compensation for their time and efforts in the form of phone credit.

I started with an exploratory approach to identify the key issues together with the participants. The interviews were semi-structured; there were several points from my topic list that I always included, but I also allowed other topics to arise, and listened to the concerns and questions of the participants. I extensively discussed the topic lists with Wenjiao before the first interview to ensure they were suitable, and also to prepare both of

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us in terms of language. Taking an iterative approach, I reflected on the data and developed topic lists accordingly throughout my research. (Richie et al. 2014; Green and Thorogood 2014)

3.6 Language

All interviews were conducted in Mandarin Chinese, with Wenjiao present to

translate between dialect and standard Mandarin or English when necessary. My Chinese is good enough to communicate with people; I studied it during my BA program, and to prepare for this research I took an additional language course in China. As people can easily tell by my appearance that I am a foreigner, they usually take into account that I am not a native speaker and slow down a bit, and my Chinese is good enough to ask for clarification or to rephrase things. The main challenge was the local dialect spoken in Henan Province, Henanhua; some words are different and especially the pronunciation can be quite different from standard Mandarin. Over time I also became more familiar with the local dialect, but especially when people had strong accents it was good to have Wenjiao there to interpret.

To let the conversation flow and to communicate as directly as possible, Wenjiao clarified only when necessary and we used English as little as possible. I usually tried to rephrase what I understood in Chinese to check my understanding directly with the participant. This often also prompted them to tell me more about it, and sometimes they would spontaneously start to explain words to me. At times I also asked Wenjiao to explain things to me in standard Mandarin, to get a more direct translation of what had been said and to keep the participant included in our conversation. Although every interview was undoubtedly full of linguistic errors and improvised use of language, I think Wenjiao and I found a good way to facilitate real conversations.

It was not always appropriate to ask for translation directly, so there were parts of the conversation that I only realized afterwards would have been interesting to ask more about. This is also one of the reasons it was so important to work together with Wenjiao, who really knew what kind of things I was interested in, and who could summarize

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3.7 Eliciting tools

Initially I was planning to use creative methods to help the conversations, but during most interviews it did not seem necessary. Occasionally, I used a body mapping drawing as an eliciting tool to ask the participant where they experienced their disease. I let Wenjiao make the drawing of the body, which also included a text balloon for thoughts. Later I added a red heart in the chest, because when the participant talked about her feelings, she

pointed at the place of the heart and used the Chinese phrase 心里, literally in my heart, which is a common way to describe feelings.

3.8 Focus group

While I was still considering how to organize a focus group, one spontaneously happened as I asked one person to do an interview, and four people followed me into the office. It was a very interesting discussion, there was a good group dynamic, and the participants both answered my questions and also really discussed things among

themselves, which gave me the interesting opportunity to sit back and observe. I also did one interview with a couple.

3.9 Kidney-related events at the hospital

During my fieldwork I also joined some activities happening at the hospital that seemed to be related to my research topic and that people invited me to join, such as a lecture about nephrology for nurses in our hospital and International Kidney Health day. On this day there were free consultations for the public in front of the hospital, during which I helped setting up and observed, followed by several lectures open to staff, patients and the public about kidney health. At the end of our research Hongxia and I gave a short

presentation for the nurses at the Nephrology Department about our preliminary results and about doing research in general.

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3.10 Analysis of the data

All interviews and focus groups were recorded after explicit permission from the participants, except for one during which Wenjiao and I both took notes and recorded our own discussion afterwards instead.

All recordings were transcribed in the original language by my colleague Shuchen. To analyze them, I made excel files with different columns for the original transcription in Chinese characters, the pinyin (phonetic alphabetization) version, and an automatic English translation from Google Translate. I read everything in the original characters, with the help of the pinyin version, and used the (often incorrect) English translation only for occasional reference.

After constructing an initial framework with themes and subthemes, I coded the data accordingly, and added missing themes to the framework. Then I collected the data per theme and summarized it. After that, I organized it into sections to answer my questions, and collected relevant quotes. (Richie et al. 2003)

Figure 3: Example of my data in excel with columns for original transcription in characters, pinyin version, automatic translation, and codes.

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4 Theoretical Framework

In this section, I will discuss the theoretical concepts that I used to look at the social context of CKD in Henan: self-management, eHealth, biosociality, disease vs illness,

explanatory models, intersubjective experience and (in)dividuality.

4.1 Self-management of CKD

There is no one definition of self-management. (Barlow et al. 2002; Ryan and Sawin 2009) One possible definition is “the individual's ability to manage the symptoms,

treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition.” This includes the “ability to monitor one's condition and to effect the cognitive, behavioural and emotional responses necessary to maintain a satisfactory quality of life.” (Barlow et al. 2012, p.178)

Following Clark et al. (1991), Barlow, Sturt and Hearnshaw (2002) make a distinction between ‘self-care’ as “tasks performed by healthy people at home” and ’self-management’ as “the daily tasks conducted by people at home to control / reduce the impact of disease on physical health status … undertaken in collaboration with, and, under the guidance of healthcare providers.” (Barlow, Sturt and Hearnshaw 2002)

One possible definition of self-management of CKD is “what patients can do to slow down disease progression.” (Shen 2018) This includes changes in diet, exercise, cessation of smoking, reducing alcohol consumption, and maintaining a healthy weight. In addition, symptoms and progression can be managed with medication, such as blood pressure medication, statins to prevent heart problems, water retention medication, anemia medication. (Nierstichting 2018)

Slowing down progression is an essential component of care in the case of CKD (Diamantidis and Becker 2014), especially because once it reaches the stage of kidney failure (stage 5), the treatment is a heavy physical, emotional, psychological, financial and social burden on both patient and health care system. (Braun et al 2012) In their systematic review (2017) that included studies on self-management of CKD in different locations, Teasdale et al. call for focus on comorbidity and the need for psycho-social support in the CKD management process. The self-management aimed at slowing down CKD progression

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requires serious engagement and participation of the patient. eHealth is seen as a promising tool to assist people in this. (Huygens et al. 2016)

4.2 eHealth and self-management

eHealth can broadly be defined as “the use of information and communication technologies (ICT) for health.” (Ahlin and Nichter 2015) The use of eHealth to strengthen healthcare and support self-management is promising, especially for healthcare systems facing challenges such as large distances and limited financial and human resources. (Kahn et al. 2010; Clifford 2016; Duclos 2015; Cheng et al. 2017) According to the WHO country report (2016) on eHealth, 80,76% of the Chinese population used a mobile phone and 42,3% used the internet in 2016.

There has been some research on eHealth interventions for CKD, especially for patients in renal failure (stage 5) and/or after receiving a kidney transplant. Research on an eHealth tool for use in the Netherlands developed at the LUMC has had positive results in terms of reduced risk factors for CKD progression (Meuleman et al. 2017) and patient satisfaction (van Lint et al. 2015), but also exposed challenges such as limited reliability of self-reported data. (van Lint et al. 2017)

Research on eHealth during earlier stages of CKD (before renal failure) has been limited. In a study by Huygens et al. (2016), participants expressed to be anxious about doing measurements themselves, to be unsure what to do with deviant data, and that being reminded of their chronic disease regularly was a disadvantage. Those who believed they could exert a high level of control over the situation, tended to be more willing to

participate in self-management. Nauta et al. (2013) and Verheijden et al. (2007) suggest that eHealth interventions often only reach those who need it least; those who actually used the eHealth tools had already developed sufficient self-management.

Careful consideration of the perspectives of the future users of the eHealth tool is important. Huygens et al. (2016) also emphasize that before introducing new eHealth tools, attention needs to be paid to “how individuals currently manage their disease and the ways they adapt to their chronic condition.” (Huygens et al. 2016, p.2)

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This is exactly the aim of my research. As the eHealth tool is yet to be developed, my research will not focus on its effects. Instead, it is a great opportunity to focus on the

current situation, so that findings can be used to tailor the eHealth to the local context. Currently there is a lack of research on the evaluation and on the social and cultural aspects of eHealth. (Hurtado 2015; Chakraborty 2013; Ahlin and Nichter 2015; Kahn et al. 2010) Although the disease mechanisms and the biological effects of self-management are assumed to be similar on different parts of the world, the lived realities of the disease and its management might be very different.

4.3 Biosociality of eHealth technology

Several authors (Ahlin and Nichter 2015; Clifford 2016; Duclos 2015) specifically encourage anthropologists to study eHealth and contribute to adapting eHealth tools to local contexts. One of the reasons eHealth is interesting and important for social scientists to study, is that the effects, roles and origins of technology are not purely technological; rather, they interact with their contexts. (Duclos 2015; Dedding et al. 2012; Ahlin and Nichter 2015) I use the word interact because technology is simultaneously a product of those contexts and also influences them. Authors such as Rabinow (1999) and Rose and Novas (2007) use the concept ‘biosociality’ to refer to social realities created by biological, medical or technological advancements. Rose and Novas describe how the advances in biomedicine, biotechnology and genomics are changing the biological dimension of citizenship. In my research it will be interesting to see how medical discourse shapes the way people talk about CKD.

In their literature review, Dedding et al. (2012) propose an analytical framework to analyze how eHealth affects the relationship between medical professionals and patients. They note that health websites lift patient-doctor relations from their local contexts and recombine them in the following ways: replacing face-to-face consultations, supplementing existing forms of care, strengthening patient participation, disturbing relations, forcing or demanding more intense patient participation.

A1 write about the influence of ICT on the medical gaze. Through eHealth the objects of the medical gaze are no longer physically present objects that can be seen, heard and

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touched, but “bodies that are screened, digitised, and transmitted over the network.” (A1 157)

Although maybe not intended, eHealth technologies influence existing biosocial realities and relationships and create new ones. These need to be considered in the process of developing such new technologies.

4.4 Kleinman’s disease-illness distinction

My aim to research perceptions and experiences of self-management was rooted in the premise that self-management takes on different meanings as it is practiced and

becomes embedded in different contexts. The term CKD refers to a biological reality, but as it is diagnosed by a practitioner and communicated to a patient, it becomes a social reality that is somehow incorporated in the life of the patient. Self-management can mean something different at the FAHZU in Zhengzhou than at the LUMC in Leiden, and its meaning for practitioners might be different from its meaning for people with CKD, and again different for their family members.

A useful concept to look at this is Kleinman’s disease-illness distinction. Disease, which is the relevant matter in biomedicine, and often seen as objective reality, is “a

malfunctioning in or maladaptation of biological and/or psychological processes.” (Kleinman 1978, p.88) Illness is the subjective personal and social experience of this disease as part of a human life, which influences the course of the disease, and which, in turn, will be

influenced by the disease. (Kleinman 1988; Kleinman 1978)

The illness experience does not only consist of the symptoms and suffering, but also includes the person’s understanding of the illness, the coping methods, the interpretation and attitude of the person’s social network and the cultural symbols related to the

symptoms and disease. The person’s story about this illness experience is called the illness narrative. In Kleinman’s model the illness narrative does not only reflect the illness

experience, but also in turn shapes that experience. (Kleinman 1986; Kleinman 1988) Illness experience is always culturally shaped, because culture plays a big role in constituting normative views on the body, health, and how to deal with illness, and gives symbolic meaning to certain diseases and symptoms. (Kleinman 1988) Lindsay et al. (2014)

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focus on the struggle to gain control as a central aspect of illness experience among people with CKD in Australia, and the inability to do so leading to a feeling of powerlessness.

4.5 Explanatory models

To understand how different people view illness and disease, and to understand and resolve miscommunications and conflicts in healthcare, Kleinman introduced the concept ‘explanatory model’ (EM). EM’s include a person’s understanding of at least one of the following: “etiology, onset of symptoms, pathophysiology, course of sickness (severity and type of sick role), and treatment.” (Kleinman 1978, p.87-88) EM’s are related to specific knowledge systems, and they are products of history, culture and politics. They can be useful to compare how different people perceive self-management.

Faber (2000) described the tension between the practitioner’s emphasis on self-management and compliance, and the patient’s aim of living a life as normal as

possible. Self-management has also been argued to shift the responsibility of healthcare to the patient. (Dedding et al. 2012) A possible drawback of such intensive patient

involvement is that the ‘sick work’ can no longer be confined to the hospital, “but rather penetrates deeply into his private home sphere and daily life.” (Dedding et al.

2012, p.51) Rittman et al. (1993) found that control, both in the sense of control over the body through self-management and in the sense of being controlled by technology, was experienced as alienating.

4.6 Intersubjective experience

The experience of illness and self-management often extends beyond the individual and into social relationships. (Lindsay et al. 2014)

Huygens et al. (2016) found that many of their participants (people with chronic illness in the Netherlands) reported receiving social support in their self-management, and that some preferred to keep information about their disease private and were afraid that using a self-monitoring application would scare people.

Kleinman et al. (1995) conducted research on epilepsy in Shanxi and Ningxia Province in China, and looked into the Chinese context of illness experience. They

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with especially the family, rather than a subjective, individual experience as is often focused on in literature about illness experience in Western societies. According to Fei Xiaotong, a prominent Chinese anthropologist, “[t]he self is its roles and relations with others in the family (and in turn with their collective and individual networks). Suffering, therefore, is as much the intersubjective experience of parents, spouses, siblings and children as that of the sick person.” (Fei 1992, as cited in Kleinman et al. 1995, p.1325)

This importance of family wellbeing for the wellbeing of the individual can also be seen in the study of Li et al. (2014), who wrote about the perception of quality of life among older Chinese with chronic illness in Shandong province. It specifically focused on urban-rural differences. They identified two elements exclusive to the urban population (entertainment and leisure), two elements important to predominantly the urban

population (physical health and mood and spirit) and two elements of quality of life shared by both urban and rural populations (basic necessities and family wellness). (Li et al. 2014, 417) Both rural and urban older Chinese with chronic illness ranked family wellness as one of the top priorities in their quality of life, above physical health. This is relevant to

understand how people engage in self-management aimed at improving physical health.

4.7 Individuality and dividuality

To look at intersubjective experience, the concept ‘dividual’, in relation to the much more common concept ‘individual’ could be useful. Reis (2010) refers to Strathern’s (1990) concept of the Melanesian ‘dividual’ as a person composed of their social relationships with others, and to LiPuma’s (1998) argument that the tension between individualism

and dividualism shapes personhood anywhere in the world. LiPuma argues that people are not either individualistic or dividualistic, but rather always somewhere on the spectrum between the two.

When considering the relation between individual wellbeing and family wellness, I can use this framework to move beyond the question whether family or social relations in general are important (which would lead to a simple and superficial answer) to the question how they are important, which would lead to a much more nuanced understanding of these relationships.

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5 Findings

5.1 CKD according to my participants

It is not my aim to describe everything that was discussed in the interviews, but rather to discuss the themes that stood out and that people talked about extensively in the interviews. These can tell us something about which issues are most pressing to the

participants, and a basic understanding of these issues will facilitate the discussion of how people talk about CKD in different contexts.

5.1.1 CKD, creatinine, and the absence of symptoms

Actually people mostly talked about their disease in terms of creatinine levels, which serve to indicate the remaining kidney function. Everybody seemed very aware of their creatinine levels. They commonly referred to these levels during our conversations, for example when describing the nature or the severity of their illness, when describing the diagnosis or progression of illness, or when comparing their illness to other people’s illnesses.

The importance of the creatinine measurements in the narratives could be related to the absence of symptoms; with CKD, many people do not experience any symptoms, or only start to experience symptoms when the disease has already reached an advanced stage. Often, the creatinine measurements are the most tangible indicator of the disease.

This absence of symptoms was also a common theme in my participants’ illness narratives. Many people attributed their late diagnosis to this, and it was regularly

mentioned when people described how they got diagnosed, or why it took them a long time to go to the doctor. It also influenced how they learned about CKD; many described how they thought their illness was rather minor at first, because they didn’t have any or any severe symptoms, and only after a while realized that it was a rather serious disease that required intense treatment. Some participants also linked their symptoms to the

progression of the disease or the effectiveness of the treatment; for example Lingling told me that after she started dialysis, her symptoms went away.

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5.1.2 Disease management

Another topic we talked about was disease management - although I did not use this term but rather asked about things people had to do to take care of their disease. Diet was one of the themes people talked about most. Most people mentioned eating less salt and less protein. Some people mentioned drinking less water as part of diet, others mentioned it as a separate part of disease management. Most people told me that they had already got used to the diet and drinking less. Some of them said that it was very easy to get used to it, whilst others said that it took some time.

Quite a lot of people also mentioned that they needed to do some exercise every day, and that they needed to rest a lot. Some explicitly said that they were more tired because of the disease, others just mentioned that they needed to sleep more.

Taking medication was also a daily task for most of my participants. Most people mentioned ‘having to remember to take medication’ as an influence on their life, and this was also where family members came in; several people mentioned that their relatives would remind them to take the medication, and the family members I spoke to listed

‘reminding the person to take medication’ as one of their responsibilities. Hao described the role of his relatives in managing his disease as follows:

“家人会经常关心我有没有感冒，提醒我吃药，每天都会给我打电话、

发微信。

My family will always worry I don’t get a cold, remind me to take

medication, they will call me everyday, and send me WeChat messages.” (Hao)

Having to think about taking the medicines (rather than taking the medicines itself) was also listed as an influence of the illness on people’s lives; in combination with other illness-related tasks such as dialysis, diet, resting, it was one of the changes people

experienced after their diagnosis; they described how they used to do or eat whatever they wanted, but now they felt they had to pay attention and think about a lot of things.

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5.1.3 Dialysis

The people I spoke to who were on dialysis were all on peritoneal dialysis; this type of dialysis uses the body’s peritoneum as a filter to remove waste products from the blood and can be performed at home. To do this, a tube is surgically inserted in the abdomen (see figure 4). The peritoneal dialysis takes around 20 minutes, and needs to be done several times a day, ranging from 2 to 5 times a day for my participants. The other type of dialysis, haemodialysis, needs to be done at the hospital and takes several hours. For the people I spoke to this was not an option, because the rural health care facilities close to them did not have a haemodialysis machine.

Dialysis was considered a big change to daily life. First of all, they needed to pay attention to it, and plan their days and their sleep accordingly so that there would be enough time in between the rounds of dialysis. This made it more difficult to go out.

Dialysis also requires people to always have enough dialysis fluids. It was not until the end of my research that Lingling mentioned this when I asked about family’s

responsibilities and she explained that her husband would drive to the local hospital to get five big and heavy boxes of dialysis fluid every few weeks. The dialysis fluid also needs to be heated before the dialysis, which made it even more complicated to go outside. To do dialysis, you would also need to find a clean place. Hua told me that he would sometimes do

Figure 4: Model of the peritoneal dialysis tube, used to educate people at the ward. (picture taken with permission.

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dialysis in his car when he went out, and that sometimes he would even find a quiet tree and do dialysis there.

Many people had had to quit their job after starting dialysis because it was

impossible to combine the two. Whilst some emphasized the positive influence of dialysis on their symptoms, some others (especially those who had not experienced many

symptoms), did not experience any positive change.

In itself it is not surprising that many people spoke about dialysis during the interviews, since it is the main treatment option for more advanced stages of CKD.

However, dialysis also seemed to carry a certain symbolic value. Dialysis was associated with the end-stage of the disease, and for some people even death. Some listed dialysis as one of their fears. They feared the big impact of dialysis on their daily life, the costs, the

progression of the disease associated with dialysis, death. For example Fang, who stated:

“当时医生让我透析，我就想一做透析我就是个废人了，什么也做不

了，需要做透析说明已经严重到要死了。

When the doctor told me to start dialysis, and I thought that once I started dialysis I would become a ‘wasted person’ [someone who can’t do anything and needs to be taken care of by others], that I would not be able to do anything, that having to do dialysis meant that it was already severe and that I would die soon.” (Fang)

5.1.4 Hospitalization

Many people at this ward had come for their regular check-ups, and some were there for the first time and just got diagnosed. They would take 2-8 hours to travel from their hometown to the FAHZU, either by car, bus or train.

All of my participants listed the high level of health care as their main reason to come to the FAHZU. Some mentioned that the hospital was very famous, others mentioned that the doctors had a good reputation and training, others that the level of the local health care facilities was not high enough. Some decided themselves to come to the FAHZU, some were advised to do so by local health care professionals or relatives. Most people had received some sort of medical care at a local health care facility (test, consult,

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As the FAHZU is permanently overcrowded, people usually had to wait for several days before they could be admitted to the hospital. Then they would stay for a few days or a few weeks to get treatment, do tests, wait for results, wait to talk to doctors, continue to do their regular therapies such as dialysis. Contrary to what I thought at first, being hospitalized had nothing to do with the seriousness of the illness or the state of the patient; being

hospitalized, or living in the hospital, was a normal part of these check-ups.

Most people were accompanied by at least one family member; firstly because many people had to travel a long way to come to the hospital, and secondly because in this

hospital setting it is the task of family to take care of the patients (bringing water and food etcetera). Some relatives would share the patient’s bed at the ward at night, others would stay in a nearby hotel.

5.1.5 Financial pressure

The most pressing concern for most of my participants was their financial situation. When I asked the women in the focus group how CKD affected their lives, their first reaction was:

“压力大 --

-- 经济压力很大 --

--消费高，收入少 --

--没有收入，而且得了这个病失去了劳动能力，不可以干重体力劳动。

The pressure is big --

-- the economic pressure is very big -- -- the expenses are high, the income is low --

-- there is no income, having this disease I lost the ability to work, I can’t do heavy labor work.” (Wenwen and Wenqi)

With the exception of one participant who stated that he was not experiencing financial problems, all others mentioned financial pressure as the major influence of the illness on their lives. Most participants explicitly linked this to living in a rural village, for example Wenqi, Lingling and Chunming:

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“一年种地的收入一天就花完了。

The income of a year of farming is spent in one day.” (Wenqi)

“我们也不是很富裕的家庭，我老公家是农村的，所以很不容易。

We are not a wealthy family; my husband’s family is rural, so it is really not easy.” (Lingling)

“在农村家里有病人是很大的负担。

In the village a sick person in the family is a big burden.” (Chunming)

Meijuan, who is a nurse at the ward, became very emotional when she talked about the hardships that rural people face:

“对，农村患者会更受到经济的限制，他们没有钱，但是也想治病，也

想活命。

Yes, rural patients suffer more economic restrictions; they don't have money, but they also want to treat the disease and save their life.” (Meijuan)

Reasons for this financial pressure included the hospital costs, travel costs to go to the hospital, and living costs in Zhengzhou during hospitalization. Chunming explains why these are particularly problematic for rural people:

“大城市什么都贵，吃饭、住院、药，这里用的都是好药，和家乡不一

样。吃饭那么贵，肯定有压力。在自己家我种的有菜，摘下来炒一炒就是一顿饭。喝水家里有井也不用花钱。煮饭我们用的是地锅，地里捡点柴就可以烧了。在这里买饭吃，一天至少要三十多块钱。再加上住院的花销，肯定有压力。

In the big city everything is expensive; eating, being hospitalized, medicine. The medicines used here are all good medicines, which is different from my hometown. It is so expensive to eat, there is definitely pressure. In my own

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home I grow vegetables, I just pick it up and fry it, and then it’s a meal. There is a well for drinking water at home, no need to spend money. We use fire to cook, we can just pick up some firewood from the ground and burn it. Buying food here costs at least 30 yuan a day. Coupled with the cost of hospitalization, it definitely causes pressure.” (Chunming)

Other costs were costs of medicines and dialysis fluids, and loss of work. The latter did not only include the loss of their own job, but also family members who stayed home to take care of them. Some participants specifically mentioned the stress of having to take care of parents, take care of children and pay for their school fees, whilst also paying for the medical costs and being unable to earn money. Cheng described how his disease has changed the roles in his family;

“本来你应该帮助家里面的，但现在你成了家里面的负担，家里面的老

人也要照顾我，妻子要养家，也要照顾我。

Originally you were supposed to help your family, but now you have become the burden in your family; even the old people in my family have to take care of me, my wife has to support the family, and also take care of me. (Cheng)

5.1.6 Health insurance

We also talked about health insurance quite a bit. Most (if not all) of the participants in my study were on government rural insurance. They explained that most people have this insurance and that they pay a yearly fee. The insurance covers only a (small) part of the costs, leaving people with large expenses to cover by themselves. When I asked, many people were unclear about how much insurance would cover.

The women in my focus group also pointed out that many rural people with a low education, like themselves, do not really understand how additional commercial insurance (that would cover more costs) works, and also don’t have enough money to buy it:

“一般的农村人没有买保险的意识，读书少、文化低，不懂医保有这么

大作用。有的人知道医保的作用，但是经济能力有限，不想交那么多钱。Average rural people do not have the awareness of buying insurance;

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they have little education, low literacy; they don’t understand the use of insurance. There are people who understand the function of insurance, but their financial ability is limited, so they don’t want to pay that much money.” (Wenqi)

5.1.7 Migrant workers

Nowadays, many people in China move from rural areas to the city to work in factories rather than staying home to farm. Chunming’s family is an example of this:

“我们家现在人少，三口人，我和老公，还有一个儿子。儿子刚工作，

还没结婚，现在在广东的工厂里打工。农村人都喜欢去大城市里打工，但是比较远。

Our family is now a small number of people, three people: me and my husband, and one son. My son is working, he is not married yet, and now works in a factory in Guangdong. Rural people like to go to big cities to work, but they are quite far away.” (Chunming)

The rural health insurance only covers costs in the home province. Several people I spoke to are or used to be migrant workers working in other provinces. Some had to move back to their hometown after becoming ill. This is probably also related to having people take care of them in their hometown. Some of my participants were still working in cities in other provinces and only came back to Zhengzhou for check-ups or treatments. Hao told me that he came all the way back from Guangzhou (in the South of China) because his insurance only covers costs in Henan:

“每年清明节回来给我妈妈扫墓，然后来这里复查。

Every year I come back to clean the grave of my mother at Qing Ming Festival, and then I come here for a check-up.” (Hao)

When a family member back home needs to be taken care of, some migrant workers will return to the village. As a result, they have no income, and combined with the expenses for medical treatment this leads to very stressful situations.

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5.1.8 Overcoming emotional pressure

Many participants also experienced emotional pressure, which was often related to the (financial) burden of their disease on their family.

When discussing how CKD affected their lives, or how they dealt with it, many of my participants talked about the importance of attitude and used the phrase 想开, which could be roughly translated as accepting a situation and moving on. They described how they were very sad at first and then managed to move past this mental obstacle. For Chunming this did not only mark an important moment for herself, but also for her son:

“得了这种病就要面对现实，你如果开心一点，可以给儿女减轻一些负

担，但是如果更忧愁，可能会给儿女加重负担。… 后来我就看开了，有

的人得癌症，一年都活不到，我就心态好了很多，我儿子才放心，外出工作去了。他在家陪了我半年，每次看病也是他陪我，我看开了以后他可以放心工作，我也开心了，他也开心了。

When you get this disease you need to face the reality, if you are a bit happier, you can relieve some of the burden of your children, but if you are more worried, maybe you will increase the burden on your children. … Later I accepted the reality, there are people who get cancer and live less than one year, then I felt much better, then my son could also relax and went away to work. He stayed at home with me for half a year, every time I went to see the doctor he came with me, after I accepted it he could concentrate on his work, and then I was also happy, and he was also happy.” (Chunming)

5.1.9 Information

People regularly access the internet to find information and support. The internet served as a place to get information from others as well as a place to share information with other people. Most of the participants in my research used it to get information. The

majority described both advantages and disadvantages of using the internet; it is easy and convenient, and at the same time difficult to know which information is trustworthy or relevant. Most people said that there was no official or professional website to find

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information about the disease. Hao pointed out that an official website would be useful, especially for migrant workers like him:

“我觉得会对我有用，如果这个医院有的话，我就可以在南方直接搜

索，不用再跑回来。

I think it would be useful to me; if this hospital had one, I could search it directly in the South [of China], without having to run back again.” (Hao) Some people emphasized that they only used the internet to confirm the

information health care professionals had given them, or to find answers to minor

questions, or to find more information about certain medication. Jiangchao, on the other hand, specifically said that he likes using the internet because you can find some non-professional information there.

Others described that they would compare the information to their own situation or experience first to see whether it was applicable. For example, when they found a website that listed symptoms that did not match their own symptoms, they would not trust it.

Yajie uses Baidu to find information, but the information he reads there scares him, because many people who share their stories have much more severe cases of the disease, so often he thinks this information doesn’t apply to him.

A few of the people I spoke to were illiterate or did not know how to use a

smartphone or the internet, and some of them mentioned that family would look things up for them. Most people also emphasized that when they had a really important question, they would call the hospital rather than use the internet as a primary source of information.

In contrast with the internet, the hospital is seen as the main place to receive professional information from doctors and nurses. When questions arise, people often ask health care professionals directly at the hospital, or call them from home. Doctors and nurses inform people about test results, treatment and diagnosis during consultations during daily rounds. They are also expected to provide advice about disease management. Some participants told me that they would have liked to talk about their problems with the professionals, but that they are so busy that they don’t have time for that. In this thesis I will not further discuss these conversations people have about CKD with professionals. Instead, I will continue to focus on how lay people talk about CKD amongst themselves.

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5.2 Talking about CKD in different contexts

During my research I developed an interest in the way CKD is and isn’t talked about in different contexts. Talking about CKD seemed to have different functions in the different contexts. The way people talk about CKD in these different contexts also varied.

In this chapter I will aim to answer the questions: in which situations do people talk about CKD and in which situations do they avoid talking about it or actively hide it? To what end do people talk about CKD? How do people talk about CKD in the different contexts?

To answer these questions, I will compare the home context with the hospital

context. By home I am referring to the daily life setting, for most of my participants the rural village they live in. By hospital I am referring to the Nephrology ward at the FAHZU where my participants were hospitalized. Consultations are one very obvious situation in which people talk about CKD in the hospital, but I will not discuss it in this thesis, as I am focussing on how non-professionals talk about CKD.

5.2.1 Home

5.2.1.1Being Rural

All of my participants came from rural areas in Henan province. Living in rural areas was an important theme during the interviews. The urban-rural gap is a big issue in China, and most of my participants explicitly identified themselves as being 农村人, villagers.

Most people lived with their families, which usually consist of three generations. In some cases the children or grandchildren were temporarily living elsewhere for work or study (at boarding school or university). Some of the participants were migrant workers who had (temporarily) moved to big cities in other provinces to work in factories.

During the interviews it became clear that the situations in which CKD was talked about at home were quite specific, and so were the situations in which CKD was not talked about.

For most people CKD seemed to be a rather private matter, which they only told other people about if absolutely unavoidable. Most people were not too eager for the

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people in their village to know about their disease. Several participants did not actively tell people in their village, but slowly the news just got out.

For all of my participants at least someone in their family knew about it, and for several of them their close friends also knew about it. For example, Ming says:

“[别人]不知道，只有家里人知道，亲近的人和特别好的朋友才知道。

[Other people] don’t know, only the people in my family know, and some very close people and very good friends also know.” (Ming)

According to my participants, news travels fast in the village, because villagers always talk about everything. This was one of the reasons to keep the disease a secret, and also the reason why keeping it a secret is difficult.

“有些也应该知道，农村人比较八卦，他们知道了也会嘲笑。

Some might already know; villagers quite like to gossip, they laugh [at my disease] when they know about it.” (Xiaoxia)

Not everyone thought it necessary to hide their disease. Actually Xiaoxia also added that she did not really mind her fellow villagers’ attitude, because she herself had already made peace with her situation. Fang stated that getting sick is not something that needs to be kept a secret:

“得病了不是不可告人的事情。

Getting a disease is not something you can’t tell people about.” (Fang) 5.2.1.2 Reasons to avoid talking about CKD

Sometimes, people avoided talking about CKD to protect their own emotions. Fang and Ming don’t like to be reminded of their disease and therefore avoid talking about it.

Fang doesn’t like to discuss her disease with her friends; when she just got out of the hospital they all came to see her and comfort her, but she told them that the more they talk

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about it, the more she thinks about it, while she wants to forget she has a disease. So now they just call to ask how she has been but don’t ask much more about it.

Ming also prefers to avoid talking about it:

“一般只是提起，不会深入讨论，我不太喜欢讨论这个话题。… 感觉再

讨论它也没什么意思，反正我已经这样了。越说这个感觉心里面越烦躁，想一些别的、高兴的事情。

Normally we just mention it; we will not discuss it thoroughly, I don’t really like talking about this topic. … I feel like there is no point in discussing it, since I am already like this. The more I talk about this, the more annoyed I feel; I try to think about some other things, happy things.” (Ming)

However, people’s most common and important reason for not talking about CKD or hiding it completely was to protect family members. This is related to the importance of family structures and filial responsibilities (of children towards their parents) in Chinese society.

Firstly, people wanted to avoid family members from worrying too much. The following two cases can illustrate this:

Xiaoxia will not tell parents and family members too many details, because they don’t understand if you say too much. That will only make them worry, so she only tells them that her disease is not that severe.

Fang did not tell her son, because he is a child and would not really understand and wouldn’t be able to help her. Therefore it was not necessary to bother him with this

information. Because he is away at boarding school most of the time and doesn’t ask many questions when they videocall each other, hiding the disease from him is easy, even though Fang is doing dialysis at home. Most of her other relatives know about her disease, but not her mother, because her health is not good.

Secondly, people worry about the sacrifices their relatives, especially their children, will make for them. Xiaolu is scared to tell her daughter and cried when we talked about this; she is worried that her daughter will give up her chance to pursue a master’s degree

The importance of bingyou in illness experience : social functions of the ward and bingyou relationships in management of Chronic Kidney Disease among rural people in Henan Province, the People's Republic of China