Table 3 Semi-structured interviews guide

Introductory remarks:

• Transitional and ice-breaking comments and questions: follow situational cues to help the patient feel comfortable and establish a connection, e.g. ask about their trip to the hospital, their appointment today, etc.

• Thank the interviewee again for agreeing to talk to you.

• Confirm that their participation is entirely voluntary and that they can withdraw at any point without giving an explanation and without any consequences for the health care they receive.

• Ask them to tell you if at any point they feel tired and want to stop to take a break.

• Tell them that there are no right or wrong answers and you want to understand what they think and feel, that it is about their experiences and it doesn’t matter what anyone else tells them is right, true, good …, even if it is the doctor [add another authority – e.g. husband, mother, etc. if you have indications that they may have a significant influence on the patient]. If appropriate, can make a joke adding the President or somebody famous to that list of authorities.

• Try to use as much of the language they are using – e.g. the way they call ‘End Stage Renal Disease’.

1. You and your illness

Core question: Could you tell me about your kidney disease? For instance, how and when you developed it and if it has changed your life or not?

Possible probes if interviewee asks for further guidance [though first try to paraphrase and reassure that any way they understand it is good] or if their answer has been brief [again, first try to leave open – Anything else?]:

-When were you told that you have kidney disease?

-Where was that?

-What made you go to the doctor/ hospital?

-What did you know about kidney disease at the time?

-What do you think might have caused your kidney disease?

-What treatment are you currently receiving?

-Has kidney disease changed your life in some big ways?

-What do you feel is your biggest challenge about living with it?

2. Physical Health

Core question: Can you tell me how you’ve been feeling physically over the past 6 months? What do you feel in your body?

Possible probes if interviewee asks for further guidance [though first try to paraphrase and reassure that any way they understand it is good] or if their answer has been brief [again, first try to leave open – Anything else?]:

-What physical ailments have you been having?

-Which ones have disturbed you the most? In what ways?

-Is the health care you are receiving helping enough with those ailments? Can you tell me a bit more? What is helping? What is not helping? What is good about it? What is not that good?

-How many pills do you take in a day? How does it feel?

-Are they too many? Difficult to swallow? Expensive to buy?

-Do you feel they help enough? Or do they help for some things but make others worse?

-Do you sometimes skip some doses?

-How often do you come to the hospital?

-How far do you live? How far is it for you to travel? Does it make it difficult to come?

-What do you think about the care you are getting here at the hospital?

-Can you give me some examples of both when it was good and bad, or not so good?

3. Daily lif

Core question: How has kidney disease changed what you can do in your everyday life? The normal things that you do from when you wake up in the morning to when you go to sleep at night?

Possible probes [again, use only after first opening space for the unguided understanding of the interviewee]:

Eating and drinking

-How is your appetite?

-Did you change the food you are eating? How are you finding the changes?

-Do you miss some of the things you shouldn’t eat? How do you like the ‘new’ foods?

-Is it difficult to find some of those foods?

-What about the things you are drinking?

Movement, daily tasks and work

-Are there things that are more difficult to do because you feel weaker?

-What about daily tasks and self-care? E.g. bathing, eating, turning in bed, transferring from bed to chair? What about vigorous activity, like fetching water?

-What about working to earn money?

-Going out of the house and visiting friends and family?

Sleep

-Do you have trouble sleeping?

-What makes it worse? What makes it better?

-What do you think about when you can’t fall asleep?

-How do you feel if you haven’t slept well?

Family

-Who in your family knows about your illness? How much have you told them?

-How did the conversation go?

-What were their reactions?

-How are they supporting you in living with the illness and taking care of your health?

-In what ways are they helping? E.g. helping at home, visiting you in the hospital, looking after you in the hospital, bringing you food, paying some of your bills … .

-My next questions may feel too personal, remember it’s entirely up to you how much or little (or not at all) you say, but how has the illness affected your relationship with your spouse or partner? Or if you are not in a relationship, your plans for one?

- Has your illness affected your sexual relations?

-Going back to the support you are getting from your family as a whole, can you give me some examples of when it felt good and when it didn’t?

Money

-Do you have a job or some other steady source of income?

-How much money do you spend on your health care in a month? Medication, consultation fees for doctors, transport, food while in the hospital, rent, etc.?

-How much of your monthly income is that?

-How do you manage those expenditures?

-Have you needed to borrow money?

-Does spending on your health care mean others in the family can’t get what they need or have to wait for it longer? What do they say? How do you feel? [Might need to close topic and move on with a compassionate comment that it’s a big and difficult topic.]

4. Psychological Health

Core question: How has kidney disease affected how you feel? About yourself, about life in general? Has your usual mood changed?

Possible probes [again, use only after first opening space for their unguided understanding]:

- Do you feel that this disease is stressing you out? In what ways?

-Do you feel like a burden to your family? Can you tell me a bit more?

-Do you worry about your future? What do you most worry about?

-Has this changed how you plan things?

-Do you ever think about a time when you are no longer in this world?

-If yes, what are your thoughts on this?

-Have you made a will or discussed it with anyone?

-If you don’t want to think about a future when you are no longer in the world, can you tell me very briefly why, only so that I may understand, not because I want to make you think about it.

-Has your illness brought about anything positive? Do you sometimes feel good about it?

5. Social Health

Core question: Can you tell me how your illness has affected your relationships with other people? We spoke of your immediate family (and can come back to it), but perhaps we can talk more about your friends, neighbours, workmates, maybe other patients or even strangers?

Possible probes [again, use only after first opening space for their unguided understanding]:

-Do people other than your family help you in living with your illness or taking care of your health? E.g. neighbours, friends, workmates?

-How are they trying to help you?

-How do you feel about that? In what ways is it good? In what ways it isn’t?

-Have you lost touch with some people because of your illness? How did it happen?

-Do some organizations, such as NGOs, provide support? In what ways?

-Do you sometimes feel lonely? Or too different from others?

6. Spiritual Health

Core question: It may feel a very big, serious question, and it’s entirely up to you if you want to think and talk about such things, but can you tell me what helps you cope with your illness or what gives you strength when facing a difficult illness such as the one you are going through?

Possible probes [again, use only after first opening space for their unguided understanding]:

-Do you believe in God or a higher power?

-How has your illness affected your faith and your sense that life has a meaning?

-Has your faith helped you accept and live a good life in spite of your illness? Can you tell me of such times?

-Or has the opposite happened, you started losing faith because of your disease? Can you tell me of such times?

-What gives you hope? Can you tell me of times when you had high hopes about your health?

-What makes you lose hope about your health? Can you tell me of situations when that’s happened?

-Are there any religious practices which help you cope with your illness?

7. Wrapping up

• Thank you for your time and contribution to this study, we are just wrapping up now. I would like to know, given what you have been through so far, what advice would you give to a fellow patient?

• What about health care providers? How can they help patients better?

• How about the Government and Ministry of Health? How can they contribute to improving your health as a kidney disease patient?

• What information would you like to have about your health in general and kidney disease?

• Is there anything else you’d like to tell me?

• Is there anything else you’d like to ask me?

Thank you so much for your time and participation.