The role of the social network during inpatient rehabilitation: A qualitative study exploring the views of older stroke survivors and their informal caregivers

Figures & data

Table 1. Interview guide

1	What have been your activity experiences since you/your loved one^a had a stroke? (What happened? How did the stroke affect your activities? Which activities have you performed or tried to perform so far? How did it go?).
2a	Can you please tell me about the activities you most value doing? (regardless of whether you have been able to do them after the stroke). Take a look at this pile of pictures/this list^a,1 and pick out the activities you value doing the most (e.g. because they are your favourite or doing them is just very important to you).
2b	Which of these activities would you most like to resume (or maintain) once you/your loved one^a are/is home again?
3	What are your expectations about the resumption (or maintenance) of these activities after discharge?
4	What can the people important to you (e.g. your family members, friends or neighbours) do to help you resume (or maintain) these activities?
5	What, in your opinion, can be done during rehabilitation to make sure these people can help you resume (or maintain) these activities once you/your loved one^a are/is home again? (What is the role you expect rehabilitation professionals to play with regard to these people? For example, what should professionals do, or what should they tell or show these people so they can help you resume (or maintain) these activities?)

^aquestions asked of the stroke survivor/the primary caregiver

¹The pictures and the list of activities of the Activity Card Sort (ACS), Dutch version,⁴² were used to support understanding and enable the participants to systematically consider all kinds of activities.

Table 2. Characteristics of the participating stroke survivors and primary informal caregivers (names are pseudonyms)

	Stroke survivor					Primary informal caregiver
Name	Gender	Age	Weeks since stroke	Living with …	Example of valued activity	Name and relationship to stroke survivor	Example of valued activity
Anna	f	79	7	spouse	household activities	André, son	work
Bep	f	76	8	spouse	embroidering	Ben, husband	keeping birds
Corry	f	85	7	-	watching TV	-	-
Dora	f	87	5	-	visiting family and neighbours	Danielle, daughter	family activities
Ed	m	78	12	spouse and son	traveling	-	-
Ferdy	m	88	15	spouse	driving	Fenna, daughter	raising a puppy
Geert	m	70	7	spouse	playing chess	Gerda, wife	sport activities
Hans	m	75	6	-	attending football matches	-	-
Jan	m	80	6	spouse	long-distance walking	Jolanda, daughter	writing
Kees	m	69	8	spouse	motorcycling	Kaatje, wife	playing tennis
Leo	m	71	8	spouse	bicycling	Lena, wife	going on outings
Mart	m	73	6	spouse	playing cards	Mara, wife	swimming

Table 3. Themes, categories and representative quotes (names are pseudonyms)

Sudden activity changes
	‘My hand hasn’t worked properly since I had this stroke, so fastening buttons and the like is difficult.’ (Kees, stroke survivor) ‘I used to go for long walks, but, for the time being, I won’t be able to do so because of this wheelchair … ’ (Jan, stroke survivor) ‘Everything just stopped. I mean … the everyday things you normally do, they just stop.’ (Gerda, Geert’s wife) ‘I tried to take a tennis lesson, but I simply couldn’t concentrate anymore.’ (Kaatje, Kees’s wife)
An uncertain but hopeful future
	Not having considered thoroughly/not knowing what activity limitations to expect after discharge: ‘Actually it hasn’t crossed my mind … Maybe I’ll need some assistance [preparing a meal], but I’m not sure.’ (Hans, stroke survivor) ‘I’m not sure what activities will be difficult [after discharge] … Just wait and see … ’ (Bep, stroke survivor) ‘It depends … If I can leave my husband alone, I can do something of my own … ’ (Mara, Mart’s wife) ‘We have to wait and see what she can do and what help she’ll need from me. It is difficult to know in advance.’ (Danielle, Dora’s daughter)
	(Yet) having a positive outlook: ‘I will be just fine, returning to my odd jobs around the house.’ (Kees, stroke survivor) ‘Recovery is just a matter of practice. You have to do your exercises.’ (Geert, stroke survivor) ‘Until now, everything has revolved around my husband’s recovery. But once he’s home, I am sure I can pick up my sports again.’ (Kaatje, Kees’s wife) ‘I’m sure that once he’s home I’ll gradually be able to resume my work again … ’ (Jolanda, Jan’s daughter)
	Help is not necessary (but will be available): ‘My wife and I will manage, we won’t need any further help.’ (Mart, stroke survivor) ‘I guess I’ll be all right … And, if I need help, my godchild will help me out … She is a nurse, you see.’ (Leo, stroke survivor) ‘[Once he is home], I won’t be able to leave him alone too long yet. But I can always ask my friends to come over instead of going there.’ (Gerda, Geert’s wife) ‘I will be fine … If necessary, I can ask my father’s friends to pay him a visit. So I will have some time to do something of my own.’ (Jolanda, Jan’s daughter)
No need for the team to involve the network
	No reason for (or: reasons against) network involvement: ‘The family is not their responsibility; therapy is there for the patient. It’s us who have to do it, eh?’ (Anna, stroke survivor) ‘I only want my wife to be involved. I did not inform too many others that I am here; not everybody has to know. I just want some rest to try to accept that I’m here in the first place.’ (Mart, stroke survivor) ‘For us, there is no need to involve the wider network. We pass on the information ourselves.’ (Jolanda, Jan’s daughter) ‘Maybe for other people who have a small network … But not for us.’ (Kaatje, Kees’s wife)
	Professionals already do enough: ‘They said to my wife, “You can always join the therapy if you want to” and then they explained what they did [so they already do enough].’ (Mart, stroke survivor) ‘Visiting hours are from ten to ten and everyone is welcome at any time. So that’s great enough.’ (Jolanda, Jan’s daughter)
Improved insight and awareness through experience, knowledge and information
	(Previous) experience enhances insight and awareness: ‘The occupational therapist let me prepare a meal. At first, I thought I couldn’t. But once I did, I thought: “Oh, that!” and she said I did well. So I assume the rest will come to me in time too.’ (Dora, stroke survivor) ‘Doing the groceries was a problem before, so it won’t be any easier now that I use this walker.’ (Anna, stroke survivor) ‘My husband was home for the weekend. The therapist came by and we found that my husband could climb the stairs without help. It all went fine.’ (Gerda, Geert’s wife) ‘My husband’s family is very close. They are all eager to know how he is doing, and I have to inform them all … It would have been helpful if someone [from the team] had invited them to come to the centre’s family meetings … Because together you know more.’ (Lena, Leo’s wife)
	Knowledge and information enhance insight and awareness; ‘They say I won’t be able to climb the stairs, so I’ll have to apply for a stair lift.’ (Anna, stroke survivor) ‘The physical therapist told me that fatigue is very common in this case. So I guess I have to accept it for now.’ (Geert, stroke survivor) ‘The information meeting at the rehabilitation centre was helpful. Although the part about personality changes was quite hard to hear, it helped us to better understand what happened and what to expect.’ (Jolanda, Jan’s daughter) ‘Our family practised walking the stairs, using the exercise bike and walking outside with him because [as a health care worker] I know that half an hour of therapy won’t do the job. But that wasn’t because the team asked our family to do it. Which actually is a pity because, just after a stroke, it is important that you have enough practice … ’ (Fenna, Ferdy’s daughter)

Poerbodipoero SJ, Sturkenboom IH, van Hartingsveldt MJ, et al. The construct validity of the Dutch version of the Activity Card Sort. Disabil Rehabil. 2016;38(19):1943–1951.

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