Perceptions of engagement in health care among patients with tuberculosis: a qualitative study

Figures & data

Table 1 Interview guide

1. Can you describe what PE in health care means to you?

2. Can you describe your experience engaging in health care?

3. What things facilitate or hinder your engagement in your own health care?

4. Are there any individuals or groups that are important when you engage in health care?

5. Is there anything else about engagement that you want to talk to me about?

Abbreviation: PE, patient engagement.

Figure 1 Patient’s perceptions of engagement in health care.

Abbreviation: HCPs, health care providers.

Table 2 Demographics of the participants (n=23)

Variables	N (%) or (mean ± SD)
Gender
Male	11 (47.82)
Female	12 (52.18)
Age (mean ± SD)	30.27 (9.05)
Employment
Employed	7 (30.43)
Not employed	9 (39.14)
Others (student/retired/farmer)	7 (30.43)
Education level
Primary school or less	5 (21.74)
Middle school	11 (47.83)
College or above	7 (30.43)
Marital status
Married	10 (43.48)
Unmarried/divorced/widowed	13 (56.52)

Table 3 Illustrative quotes for the themes and subthemes

Theme 1: Devaluing engagement
Subthemes	Quotes
	“There is no difference in engaging or not. I still get shots and take medications every day” (P13).
	“It is useless because I’m sick now, and it can’t change anything, and I don’t want to add extra stress on myself” (P15).
	“It will probably make me more worried about my condition after engaging in health care (…) and might be even worse” (P23).
	“For me, knowing more brings more stress” (P5).
	“Yes, of course I need to engage because it’s all about me. But there is not much that I can do” (P8).
Theme 2: Interacting with HCPs
Trust and dependence	“It is the doctors’ job. We don’t need to do that” (P14).
	“Doctors have the best understanding of my health condition. I trust the doctors overall. (…) We are the patients” (P20).
	“I have never thought about that because health care providers are the professionals, and we only need to follow their commands” (P2).
Passive obedience	“Since admission, I have no choice but to totally obey the doctors, and they also never talk with you about anything. Only when the results are abnormal will they come and tell me what to do. Otherwise, they will not come and talk to me” (P16).
	“After hospitalization, I lost control. (…) We are pushed around like laboratory mice” (P18).
	“Doctors control everything when you are hospitalized. We have no control over things like medication, examinations. We have to follow their orders” (P14).
	“It doesn’t make any sense. They will not talk with you. One time, I asked a nurse a question, but she refused to tell me and told me to ask the doctors. It is hard to contact the doctors. So forget about that, just follow them” (P19).
Theme 3: Facing inability
Overwhelmed by illness	“Taking these medications makes me tired. I don’t want to do anything but have a good rest” (P5).
	“I lost my appetite recently. That medicine upsets my stomach, which makes me weak and lethargic. (…) It is hard to spare extra effort to consider other things” (P12).
	“I cannot lie on my side because of excess fluid. My breathing is short, and my chest is painful. It torments me” (P2).
	“I think TB is an obstinate disease, it drains my energy” (P16).
	“I cannot do anything since I came here. I cannot help with family; I cannot work” (P19).
	“So far, we have spent tens of thousands, that is too much. I have been thinking of quitting treatment if it continues to cost so much” (P9).
Lack of information	“We are blind as a bat. We have no idea about the progress of treatment and the results of examinations. So we hope the doctors can at least tell us what is going on. Sometimes I feel like something is wrong. It is not what we tell doctors but what doctors tell us. It seems our roles are reversed” (P16).
	“It is terrible to get information online; I feel so upset because it said TB is like cancer. Some website even said that TB can’t be cured and may get worse in the future” (P7).
	“Since hospitalization, I have had lots of examinations. I sometimes wonder why I need to have each examination, but nobody answers me” (P19).
	“When doctors come by on ward rounds, I can talk to my doctor but only for a few minutes. They are always busy” (P4).
Theme 4: Seeking external support
Support from family members	“My wife takes on all responsibility for the child and the older family members, and she always encourages me to confront the future with optimism” (P1).
	“I need to engage in treatment for my family. I want to recover as soon as possible so that they will not worry about me and I can go home earlier” (P9).
	“My family asks around to help me. I can depend on them, they take care of my daily life and are concerned about my treatment” (P18).
	“My parents give me a hand paying for treatment. They want me to be cured quickly” (P15).
	“I don’t want my parents to come here. This place is special because all the patients are infected. I am worried that they will get infected too” (P11).
Support from peers	“Once a time, I had some spicy food and milk. My roommate reminded me that I could not eat these during drug therapy. I found that to be helpful” (P2).
	“When I have some emotional problems, I always choose to talk to my roommates. They always listen to and inspire me. I believe this is very important because I realized that we are in the same boat. I am not alone. This makes me feel much better” (P7).
	“I don’t want to talk with others. But we are the same here, (…) cross-infectious” (P14).
	“Maybe it is useful, but I am not sure about the accuracy of what they are talking about. So (…)” (P10).

Abbreviations: HCPs, health care providers; P, patient; TB, tuberculosis.

Table S1 COREQ checklist

No item	Guide questions/description	Reported on page number
Domain 1: Research team and reflexivity
Personal characteristics
1. Interviewer/facilitator	Which author/s conducted the interview or focus group?	Page 5, Data collection, by lead author
2. Credentials	What were the researcher’s credentials? eg, PhD, MD	MSN, PhD
3. Occupation	What was their occupation at the time of the study?	Full-time PhD student
4. Gender	Was the researcher male or female?	Not reported in paper, female
5. Experience and training	What experience or training did the researcher have?	Not reported in paper, participating in qualitative research seminars
Relationship with participants
6. Relationship established	Was a relationship established prior to study commencement?	Not reported in paper, cooperate with three chief nurses
7. Participant knowledge of the interviewer	What did the participants know about the researcher? eg, personal goals, reasons for doing the research	Page 5, Data collection, fully informed the purpose and content of study
8. Interviewer characteristics	What characteristics were reported about the interviewer/facilitator? eg, Bias, assumptions, reasons, and interests in the research topic	Not reported in paper, the lead author is a PhD and would like to introduce patient engagement into health care field especially to Chinese health care field
Domain 2: Study design
Theoretical framework
9. Methodological orientation and theory	What methodological orientation was stated to underpin the study? eg, grounded theory, discourse analysis, ethnography, phenomenology, content analysis	Page 5, Data analysis, use thematic analysis
Participant selection
10. Sampling	How were participants selected? eg, purposive, convenience, consecutive, snowball	Page 4, Participants, purposeful sampling
11. Method of approach	How were participants approached? eg, face-to-face, telephone, mail, email	Page 5, Data collection, face-to-face
12. Sample size	How many participants were in the study?	Page 6, Results, 23
13. Nonparticipation	How many people refused to participate or dropped out? Reasons?	Page 6, two participants, no reasons provided
Setting
14. Setting of data collection	Where was the data collected? eg, home, clinic, workplace	Page 4, Setting, a consulting room in hospital
15. Presence of nonparticipants	Was anyone else present besides the participants and researchers?	Not reported in paper, no people else present
16. Description of sample	What are the important characteristics of the sample? eg, demographic data, date	Page 20, Table 2
Data collection
17. Interview guide	Were questions, prompts, guides provided by the authors? Was it pilot tested?	Page 20, Table 1; Page 5, Data collection, two pilot interviews
18. Repeat interviews	Were repeat interviews carried out? If yes, how many?	Not reported in paper, no repeat interviews
19. Audio/visual recording	Did the research use audio or visual recording to collect the data?	Page 5, Data collection, audiotaped
20. Field notes	Were field notes made during and/or after the interview or focus group?	Page 5, Data collection, memos were written throughout the data collection and analysis phases
21. Duration	What was the duration of the interviews or focus group?	Page 5, Data collection, 30–65 minutes
22. Data saturation	Was data saturation discussed?	Page 5, Data collection, data saturation was achieved
23. Transcripts returned	Were transcripts returned to participants for comment and/or correction?	Not reported in paper, no transcripts returned
Domain 3: Analysis and findings
Data analysis
24. Number of data coders	How many data coders coded the data?	Page 5, Data analysis, three researchers
25. Description of the coding tree	Did authors provide a description of the coding tree?	Not reported in paper
26. Derivation of themes	Were themes identified in advance or derived from the data?	Page 5, Data analysis, themes were derived from data
27. Software	What software, if applicable, was used to manage the data?	Page 5, Data analysis, NVivo 11
28. Participant checking	Did participants provide feedback on the findings?	Not reported in paper
Reporting
29. Quotations presented	Were participant quotations presented to illustrate the themes/findings? Was each quotation identified? eg, participant number	Page 6, Results, with identifiers as “p+number”
30. Data and findings consistent	Was there consistency between the data presented and the findings?	Results, yes
31. Clarity of major themes	Were major themes clearly presented in the findings?	Results, yes
32. Clarity of minor themes	Is there a description of diverse cases or discussion of minor themes?	Results, yes

Abbreviations: COREQ, Consolidated Criteria for Reporting Qualitative Research; MSN, Master of Science in Nursing.