The precarity of patient participation - a qualitative interview study of experiences from the acute stroke and rehabilitation journey

Figures & data

Table 1. I-Core DIST intervention and standard care.

I-CoreDIST	Standard Care
Physiotherapy daily if in-patient or 3 days/week if outpatient. 12-week follow up Structure for assessment Clinical reasoning charts Booklet containing 44 illustrated exercises, each with five levels of difficulty	Physiotherapy daily if in-patient or 3 days/week if outpatient. 12-week follow up No guidelines regarding physiotherapy approach

Table 2. Inclusion and exclusion criteria for the RCT.

Inclusion Criteria	Exclusion criteria
Admitted to the stroke unit with confirmed stroke Age: 18–85 Premorbid modified Ranking Scale 0–3 Able to sit unsupported for 10 seconds Trunk Impairment Scale -Norwegian version score <15	Unable to cooperate in physiotherapy Ongoing substance-abuse Dementia or other severe disease preventing rehabilitation

Table 3. Overview of informants.

ID	Gender	Age	Type of stroke	Location	Side	Premorbid employment status	NIHSS adm	In-patient rehab	Post stroke week at interview	Group
1	Male	55	Infarct	Parietal	Right	Employed	0	No	10	C
2	Male	75	infarct	Frontal	Left	Retired	2	No	9	C
3	Male	78	Infarct	Frontal/parietal	Right	Retired	3	Yes	9	C
4	Female	73	Infarct	Temporal/parietal	Bilateral	Retired	11	Yes	18	I
5	Female	77	Infarct	Frontal/occipital	Bilateral	Retired	3	No	13	I
6	Male	58	Infarct	Brainstem	Left	Disability benefit	4	No	12	I
7	Male	75	Infarct	Parietal/occipital	Right	Retired	4	Yes	27	C
8	Male	77	Infarct	Parietal	Left	Retired	3	No	25	C
9	Female	79	Infarct	Parietal	Left	Retired	1	No	24	I
10	Female	82	Infarct	Frontal	Right	Retired	x	No	19	C
11	Male	75	Infarct	Parietal	Right	Retired	2	No	25	I
12	Female	39	Infarct	Temporal	Left side	Disability benefit	5	yes	19	I
13	Male	81	Hemmorage	Parietal/occipital	Right	Retired	14	yes	24	C
14	Female	71	Infarct	Capsula interna	Right	Retired	3	yes	15	C
15	Male	62	Infarct		Left	Disability benefit	4	yes	38	C
16	Male	74	Infarct	Temporal	Left	Retired	2	No	29	C
17	Male	75	Infarct	Lacunar	Bilateral	Retired	3	No	7	I

Table 4. Examples of the analysis process.

Step 1, preliminary themes	Step 2, examples of meaning units	Step 3, code group, sub-groups with headings and condensates (excerpts)			Step 4, category heading and analytical text (excerpts)
The stroke Waiting time Inactivity	“As I was about to go into the movie theatre, suddenly I could not stand on that one leg” “I said to my wife -I think we should call now, call the doctor. Because something is not right” “I was lying there, I was to have an X-ray, an MRI and a CT scan. So, I laid there waiting for those. The days went by waiting for that sort of things” «How I would describe a day in the stroke unit? Well, I was in bed most of the time. That was it”	A person vs a case	A silent earthquake	Inactivity and waiting	From an autonomous person to an assembly line object
			Suddenly I was unable to stand on my leg and I felt dizzy. What I noticed was that I could not speak or move like I wanted to. I could not butter the bread, I could not coordinate properly. We decided to call the doctor because something was not right. I decided to call the emergency number.	There was no therapy in the stroke unit and no activities either. There wasn’t much to do. A day in the stroke unit was long and boring as you just lay there waiting to see what they were doing next. I felt that my role was to stay in bed and be ready. I would have had capacity for more activity	The onset of the stroke was described as an awareness of sudden bodily changes and becoming unable to do something they usually took for granted. The participants made an active choice to seek help. When at the hospital the participants describe themselves as passive receivers of care. They describe a number of investigations and tests and that their main role was to stay put and be ready for the next investigation. Apart from assessments the participants describe being inactive for much of their time in the stroke unit.

Figure 1. Factors that mutually reinforce reduction in autonomy in the acute stage.

Table A1. Initial interview guide.

Sequence	Theme	Post-revision: Opening question Possible questions and probes
Opening	Aim and plan for the interview,	Plan for the interview Aim, explanation of why we are conducting interviews, the type of knowledge they will generate. That knowledge of both positive and negative experiences may contribute in the development of services. Disclosure of interviewers’ role as a researcher and physiotherapist (not involved in the treatment of any participants in this study); that in order to improve clinical practice we need to know both what is perceived as meaningful and what is not.
Body	The acute situation	Can you tell me about the day you had your stroke? Is there anything you remember particularly well? What changed in your body What did you feel, what did you think? Were you with someone? How did they react?
		Is there anything you remember especially well from the first day in hospital? Positive, negative experiences, why was this important to you?
	Participation in daily activities in hospital	Can you describe a normal day in the stroke unit? Can you tell me about your first memory from the stroke unit? Can you describe the atmosphere? Did you need help at all? Can you describe the help you got? How did you feel about it? Can you tell me about the daily activities on the ward? What are your thoughts about these? Is there anything you think should have been done differently? What was important to you? How do you feel about the contents of a usual day in the stroke unit/rehabilitation unit? What was particularly good/not great? What would you improve?
		What are your thoughts about the care you received and how it was tailored to your needs?
	Transfer from hospital to rehabilitation unit or home Transfer from rehabilitation unit to home	Can you tell me about the day you were discharged from the hospital/rehabilitation unit to the rehabilitation unit or home? What were your expectations? When did you learn about the discharge? What were your feelings about being discharged? What role did you have in planning when the discharge was going to happen? Was anyone else involved in this decision Were any preparations done? What were they and who was involved? How did you feel about being discharged? (ready/prepared) Can you tell me about that day, from before leaving the hospital? What was your expectations, feelings, thoughts? What is the first thing you remember from coming to the rehabilitation unit/home? (good, challenging)
	Daily activities at home	Can you tell me about a normal day at home? Describe your routines, need for help and access to help if needed, thoughts and reflections around this. What kind of therapy/training sessions do you have on a regular basis? How do you get to those? How do you feel about these? Do you exercise/are you active outside of your regular therapy/training sessions? What else do you do in a normal day?
	In-patient/out-patient rehabilitation	What is the first thing you remember from the rehabilitation unit? Can you describe a normal day in the rehabilitation unit? Can you describe the atmosphere? Did you need help at all? Can you describe the help you got? How did you feel about it? Can you tell me about the daily activities on the ward? What are your thoughts about these? Is there anything you think should have been done differently? What was important to you? How do you feel about the contents of a usual day in the rehabilitation unit? What was particularly good/not great? Why was this important to you? What would you have wanted done differently? Can you tell me about the rehabilitation you received at home? Physiotherapy, Occupational therapy, Speech therapy, other What was most important to you in rehabilitation (body function, activity, participation levels)? Why was this particularly important? Was there anything that you did not find useful? What was that? What made you feel that way about it? In what way were what you did in rehabilitation useful with regards to your difficulties. How were plans for the sessions made
Closure	Rehabilitation course	Did we leave out something that was important to you? Would you like to add something? If you were able to change something about your rehabilitation course, what would that be?
	Interview	Summary – How did you find participating in this interview?

Table A2. Amended interview guide.

Sequence	Theme	Pre-revision: Opening question Possible questions and probes	Post-revision: Opening question Possible questions and probes
Opening	Aim and plan for the interview,	Plan for the interview Aim, explanation of why we are conducting interviews, the type of knowledge they will generate. That knowledge of both positive and negative experiences may contribute in the development of services.	Plan for the interview Aim, explanation of why we are conducting interviews, the type of knowledge they will generate. That knowledge of both positive and negative experiences may contribute in the development of services. Disclosure of interviewers’ role as a researcher and physiotherapist (not involved in the treatment of any participants in this study); that in order to improve clinical practice we need to know both what is perceived as meaningful and what is not.
Body	The acute situation	Can you tell me about the day you had your stroke? Where were you and how did you feel (bodily changes)? Is there something you remember particularly well? How did you feel, what did you think?	Can you tell me about the day you had your stroke? Is there anything you remember particularly well? What changed in your body What did you feel, what did you think? Were you with someone? How did they react?
		Is there anything you remember especially well from the first day? How did you get to the hospital? Positive, negative experiences	Is there anything you remember especially well from the first day in hospital? Positive, negative experiences, why was this important to you?
	Participation in daily activities in hospital	Can you describe a normal day in the stroke unit? What is the first thing you remember from the stroke unit? Your room, the atmosphere, access to help? What were your opportunities for actively participating in daily activities/routines, such as personal hygiene, meals. Where were such activities carried out? What are your thoughts and feelings around these situations? Should anything have been done differently? Who decided how daily activities were carried out? Where did you have your meals? How did you get to your meals	Can you describe a normal day in the stroke unit? Can you tell me about your first memory from the stroke unit? Can you describe the atmosphere? Did you need help at all? Can you describe the help you got? How did you feel about it? Can you tell me about the daily activities on the ward? What are your thoughts about these? Is there anything you think should have been done differently? What was important to you? How do you feel about the contents of a usual day in the stroke unit/rehabilitation unit? What was particularly good/not great? What would you improve?
		Was the treatment you received in the stroke unit/rehabilitation unit tailored to your needs?	What are your thoughts about the care you received and how it was tailored to your needs?
	Transfer from hospital to rehabilitation unit or home Transfer from rehabilitation unit to home	Can you tell me about the day you were discharged from the hospital/rehabilitation unit to the rehabilitation unit or home? What were your expectations? When did you learn about the discharge? What were your feelings about being discharged? What role did you have in planning when the discharge was going to happen? Was anyone else involved in this decision Were any preparations done? What were they and who was involved? How did you feel about being discharged? (ready/prepared) Can you tell me about that day, from before leaving the hospital? What was your expectations, feelings, thoughts? What is the first thing you remember from coming to the rehabilitation unit/home? (good, challenging) Was there anything about the transfer from hospital to the rehabilitation unit/home that could have been done differently?	Unchanged
	Daily activities at home	Can you tell me about a normal day at home? Describe your routines, need for help and access to help if needed, thoughts and reflections around this. What kind of therapy/training sessions do you have on a regular basis? How do you get to those? How do you feel about these? Do you exercise/are you active outside of your regular therapy/training sessions? What else do you do in a normal day?	Unchanged
	In-patient/out-patient rehabilitation	What is the first thing you remember from the rehabilitation unit? Can you describe a normal day in the rehabilitation unit? Your room, the atmosphere, access to help? What were your opportunities for actively participating in daily activities/routines, such as personal hygiene, meals. Where were such activities carried out? What are your thoughts and feelings around these situations? Should anything have been done differently? Who decided how daily activities were carried out? Can you tell me about the rehabilitation you received at home? Physiotherapy, Occupational therapy, Speech therapy, other What was most important to you in rehabilitation (body function, activity, participation levels)? Why was this particularly important? Was there anything that you did not find useful? What was that? What made you feel that way about it? In what way were what you did in rehabilitation useful with regards to your difficulties? How was the content for the sessions decided upon?	What is the first thing you remember from the rehabilitation unit? Can you describe a normal day in the rehabilitation unit? Can you describe the atmosphere? Did you need help at all? Can you describe the help you got? How did you feel about it? Can you tell me about the daily activities on the ward? What are your thoughts about these? Is there anything you think should have been done differently? What was important to you? How do you feel about the contents of a usual day in the rehabilitation unit? What was particularly good/not great? Why was this important to you? What would you have wanted done differently? Can you tell me about the rehabilitation you received at home? Physiotherapy, Occupational therapy, Speech therapy, other What was most important to you in rehabilitation (body function, activity, participation levels)? Why was this particularly important? Was there anything that you did not find useful? What was that? What made you feel that way about it? In what way were what you did in rehabilitation useful with regards to your difficulties. How were plans for the sessions made
Closure	Rehabilitation course	Did we leave out something that was important to you? Would you like to add something? If you were able to change something about your rehabilitation course, what would that be?	Unchanged
	Interview	Summary How did you find participating in this interview?	Unchanged