Table 5.

Themes, categories and codes

Theme	Category	Code	Quotes
Patient-related factors	Willingness and motivation	Perception of the importance of patient participation	The treatment outcome seems to be different depending on whether I participated in patient safety activities or not. (Participant 2, Group 1) As soon as I realize I am speaking up and participating in my care, I feel that I’m an active patient. That changes the degree of participation. (Participant 1, Group 1)
		Accompanied by caregiver	My grandfather went to several hospitals and took medications from those hospitals which were the same medications he’d gotten from his primary hospital. He had no idea there were duplicates and took them all…After that I told him to get a paper prescription from the pharmacy and to bring medications which he got from other hospitals when he visits his primary hospital. I know that older people need to be accompanied by a family member when they go to the hospital. (Participant 1, Group 1) In medical settings, I thought that patient and family participation in the care process as a member of a healthcare team is important. Since my family could be anyone, a patient or a healthcare provider, I thought patient and family participation is necessary. (Participant 2, Group 2)
		Previous experience of a patient safety incident	I really wanted to hear: “Sorry, we made a mistake with the medication for your daughter. So, we took this kind of action after the incident.” But they didn’t apologize and didn’t take any follow-up action. After this incident, I strongly realized the importance of patient safety and the family’s participation. (Participant 6, Group 2)
		Concerns about having any disadvantages in treatment	Foremost, I’m afraid of having any disadvantage on my treatment, like snubbing me after I ask questions. (Participant 6, Group 2) I had a feeling on that he doesn’t put an effort into, or pay attention during my treatment. (Participant 4, Group 2) The dentist always doesn’t wash his hands. But I’ve already done my orthodontics and if I move to another dentist, it costs more. If I pointed out that he didn’t wash his hands, I thought I would be disadvantaged, so I think I’ve never been able to tell him. (Participant 3, Group 1)
	Knowledge and skill	Level of health literacy and extent of knowledge	When I asked my doctor about my medication, “I’ve heard there is this certain drug. Why didn’t you prescribe this drug for me before?” And he replied, “The other one that I prescribed is better for your hormone levels.” I couldn’t understand what he said after that, so I couldn’t ask more. (Participant 1, Group 1) He just explained in terms that he was used to. So, I had no idea about the terminology, if it was a diaphragm or something else. (Participant 6, Group 1) If I took the drug, my skin became thinner when taking a high dose of an anticancer drug. There were too many side effects. I felt outraged and became sad. “What a fool I am. I should have spoken up.” Or I could have asked about the medication at another hospital. But the medical field is too professional for me. So I had no choice but to trust him. (Participant 2, Group 2)
		Educational needs to participate in their care process	I need information on what I can do and check specifically depending on the situation. (Participant 2, Group 2) I think it would be nice if I could get an app that suggests a potential diagnosis after inputting my age and symptoms and so on. Because I can ask a doctor, “In my opinion, my symptom is A, isn’t it?” A doctor may miss the exact diagnosis owing to being busy, right? So, in that case, if I know the information on my symptoms and talk to him, then he can consider the diagnosis and go forward with his treatment plan in the right direction. (Participant 2, Group 1) When I get the medicine at the pharmacy, the information about that medicine is written on the medicine packet, and I think this is very useful for patients. (Participant 2, Group 2) I think it’s pretty important to know what questions I can ask. If I have a list of things to look out for and check, it is easy for me to get more involved. (Participant 4, Group 1) I want to know what kinds of rights patients have. (Participant 6, Group 2)
Factors involving the relationship between patients and healthcare providers	Supportive relationships	Attention on a patient and endeavour to communicate	One doctor abrasively listened to me, not my father-in-law, because he couldn’t communicate well, and gave only a routine prescription. On the other hand, another doctor tried to talk directly to my father-in-law in detail, and then, to verify, asked me, “He seemed to express such-and-such. Did you find he had the same symptoms at home?” and explained his conclusions to me in detail. I was able to trust that doctor more. (Participant 1, Group 1) When the nurse simply said, “A certain virus was found. When are you available for your next appointment?”, I was so worried because I had no idea what the virus was. So I asked the nurse to explain about the virus, and the nurse was willing to answer all of my questions. (Participant 1, Group 2)
	No opportunity to participate	Hierarchical relationship between the patient and healthcare provider	When I asked what I didn’t understand one more time, the doctor responded with a high and angry tone. After experiencing that, although I didn’t catch what he said, I didn’t ask him and instead asked another healthcare provider because I already knew what his response would be if I asked again. (Participant 3, Group 2)
		Lack of communication between healthcare provider and the patient	I had a surgery for ovarian tumor removal. My doctor briefly explained that I could choose either laparoscopic surgery or laparotomy. And I was moved to the next room to schedule the surgery. The other doctor told me in the room that “even though laparoscopic surgery is covered by insurance, it is a little more expensive, while laparotomy is cheap.” He just explained it this way. (Participant 1, Group 1) I haven’t felt that I was able to fully ask questions or get satisfactory answers. (Participant 6, Group 1)
		Failure to share treatment plan with the patient	In the process of my treatment, I didn’t feel a sense of care from any doctor or nurse. This is because they only checked over my data and wrote prescriptions, and asked about my current physical state. I had the same experience over and over. (Participant 4, Group 2) I asked my doctor what the care plan was. Then the doctor firmly said, rather than sharing the future treatment plan, “Do you want to go to another hospital?” (Participant 5, Group 2) When I try to give my opinion to try to participate from the patient’s position, whether it is right or wrong…There are doctors who insist unconditionally, saying “No, the treatment that I am doing is right.” In this case, I am not able to say anything, and I am no longer willing to participate. (Participant 2, Group 1)
Healthcare environment factors	Complexity of the healthcare environment	Complex care procedures	It was exhausting for a patient to meet a new healthcare provider every 2 or 3 min, and it was hard for me to share my problems deliberately. When talking to the final healthcare provider, a chief surgeon who was charge of my surgery, I was very fatigued so I couldn’t think of what to say. (Participant 1, Group 1)
		Limited time to see a doctor	My doctor is too busy. I have almost no chance to talk to him, because usually another patient is waiting when I’m seeing the doctor. So I can’t discuss things fully with my doctor, though I’d like to ask questions and get answers. (Participant 2, Group 1) We just took it for granted that we only listened to a doctor very briefly in the hospital, because a very limited time was allocated to us. (Participant 6, Group 1)
		Difference in patient participation by type of medical institutions	When I visit an advanced hospital for surgery or another examination, people who work there don’t know about me. So I started to write down details such as when I was ill or where I had pain, and brought it with me before someone asked me about it. (Participant 5, Group 1) When I visited an advanced hospital, they gave me information about what drug it was and what side effect it had. However, the clinic did not give me this information. (Participant 3, Group 2)