Background
Methods
Study design
Study setting
Participants
Data collection
Results
Demography of participants
Criteria | Rehabilitation professionals (N)/years | Stroke survivors (N)/years |
---|---|---|
Age, years | 27-54 | 30-72 |
Gender | ||
Male | 5 | 4 |
Female | 10 | 4 |
Occupation | ||
Rehabilitation physician | 3 | NR |
Medical social officer | 2 | NR |
Occupational therapist | 3 | NR |
Speech pathologist | 2 | NR |
Physiotherapist | 5 | NR |
Experience in stroke rehabilitation, years | 3-15 | 1-2 |
Stroke severity level | ||
Mild | NR | 4 |
Moderate | NR | 2 |
Severe | NR | 2 |
The needs for continuity of care
“Continuity of therapy outside there [the hospital] is very lacking. I agree with that because we have nursing care, we recommend continued nursing, by which I mean home nursing. They will cover a 10 km radius from the hospital, but none of them will go farther away. So, it will be a problem. That’s the major problem for us…that is, the long term care for the stroke patients. It’s the same for follow up patients. If they [patients] stay nearby, they can come for follow up, but if they’re far away, we don’t know what happens to them.” (RP1)“Even though we have home care nursing here and before discharge [from the hospital] I think we have a stroke conference with the family, but the continuity of care is not there.” (RP4)“When we want to develop the rehabilitation programme, we are looking at getting the continuum of care in place you know…and trying to identify what mechanism should be there and in our local setting, do we have enough of a support system? Compared to overseas settings, they are very rich with the support systems, the community centres have their own swimming pools, fitness gyms you know, but it’s not the physiotherapist who conducts the exercise, it’s just a qualified fitness training instructor. In other words, they are so well integrated.” (RP5)
Beliefs about long term rehabilitation
“For chronic patients, we know they have already reached a plateau, there is no long term potential for these patients. So, it’s [the focus] more towards the prevention of complications. So we teach the caregivers of the patients about complications. The issue is that prevention of complications has already been taught by the OT and PT from the beginning. So, the caregivers have already learned all of these.” (RP1)“ I think that…rehab has to stop somewhere. We don’t give rehab until the patients die. Why? After a point, you know…rehab should reach a point. We can only get to that stage [and not go any further], that’s how it is…” (RP2)
“It’s better…..it’s better, the more you exercise, the stronger you will be.” (SS1)“Okay, no problem. Exercise is definitely good. At the moment I am still doing it.” (SS2)
Perceived barriers to long term stroke rehabilitation
Uncertainties about the definition and goals of long term stroke rehabilitation
“Is there an acceptable definition of long term? When? How many years would you consider long term and whether that definition applies in our own country, in local settings?”“What is the expected rehabilitation outcome for a long term stroke? Definitely there is a difference from rehab outcomes at the different levels. So, that’s why we need to categorise patients. We said long term….. how many years, is it already gone into the chronic phase, and what would then be the expected rehab outcome?” (RP5)
Resource limitation
“So, automatically, for patients who ideally meet all of the criteria for rehabilitation, we can try to send them all for rehab. But, some get to miss out because we don’t have a stroke ward.” (RP8)“I agree; the continuity of the programme outside there [the hospital] is very lacking. So, nobody really… I don’t know who monitors them or if they get improved in that way, maybe there’s continuity. So, hospital-based, healthcare-based, and then what…..?” (RP11)
“I went to X College….so expensive….I only went a few times. It’s expensive. Furthermore, what they taught me, I had already learned when I was at the hospital. Nothing new….it’s expensive, I don’t want to continue.” (SS7)“So expensive…..it’s 200 ringgit a month. I can’t stand it.” (SS6)
“No, there is nothing we can do in the hospital. We can’t keep these patients for the long term just for what is essentially community care. There must be a place where we can actually discharge patients to make sure that they still get the necessary continuous community care. And that is the essential part which is missing.” (RP2)
Shortage of manpower
“We don’t have enough staff, we don’t have enough time. And we don’t have enough beds.We can’t keep our patients for so long.” (RP2)“I was thinking of sending my patients to allied health sciences for further care. But, because the number of staff there is very small, that becomes a problem.” (RP1)“The therapists can’t spend enough time [with each patient] because there are just too many patients. And because they don’t spend enough time with the patients, patients, when they come, just complain, you know… they spent 40 minutes (for therapy), but they don’t improve. They said ‘the therapists put me on some exercise machine, then they forgot about me. They only come back to me after I am done.” (RP2)“But, again here it’s the issue of, you can have the bodies, but if you don’t have the ‘positions’, there will be no bodies to fill them”. (RP5)
“By the time that we finished seeing them [the therapists], it’s already 1 or 2 pm, then another long line to get the medications. So, it’s a whole day at the hospital if not for lack of parking.” (RP3)
Scarcity of hospital transport services and parking spaces
“The patients will be lost to follow up. The fact is that there is a transportation problem or they live too far away.” (RP2)“If they [the patients] stay nearby they can come follow up, but if they live far away, we eventually lose them and don’t know what happens to them.” (RP11)“It’s not easy for them [the patients] to pay to come by cab…so expensive.Now they have to pay about 30 ringgit or more. So, transportation becomes a problem.” (RP2)“I stayed in Ampang….In Ampang, to get to a hospital even once, it’s difficult to get a taxi or a bus.” (S2)
“It’s the parking that’s a problem….it’s [the lot’s] always full. Sometimes we had to park at the stadium.” (S8)“I came alone. Parking was always a problem.” (S1)“I had to walk all the way. That day, I had to park near the fast food restaurant across the main road and had to walk.” (S4)
Low awareness among patients and their families regarding optimum rehabilitation
“It’s [the problem] a lack of explanation from doctors and I think, therapists as well, in a way. We spend less time with them, you know....But, other big problems that I have found is that the lack of us [rehabilitation professionals] educating patients of the need for them to come back to physiotherapy and occupational therapy or speech therapy. Some of them get an opinion that, “I just need to come to see the doctor.” That’s what they actually think. But, I think, if we actually sit down with the patients during the whole time and emphasise the need for them to comeback for therapy, then they would come back.” (RP2)
Poor motivation among stroke survivors
“Initially, I was motivated. After several months, I don’t feel that excited anymore.” (S8)“I like doing exercise at the hospital but at home I feeling lazy. Also because no one is there to guide me.” (S6)
Approaches to long term rehabilitation
Establishing community-based stroke rehabilitation
“What we should have is a rehabilitation centre and a rehabilitation hospital. Patients, after a certain period, they can be transferred to a rehabilitation hospital…. because they really have to [go there]. From the rehabilitation hospital, you can either discharge the patient….. or get them to community centres. You should discharge either to a CBR or nursing home.” (RP1)“Other than the primary community healthcare, we can also involve community-based rehabilitation settings.” (RP11)“I think, the [CBR] need to be set up to offer services to patients. We need the centres to manage projects that they can organise.” (RP15)“If we had CBR, we wouldn’t have these [lack of further care] problems.” (RP1)
Addressing the issue of manpower shortages
“Again here it relates to us having a discussion with the human resources department. Then, I believe they would be willing to work with us…this is again a multidisciplinary team using an interdisciplinary approach.” (RP5)“This brings up the point of creating rehab assistant positions… whereby these assistants are able to do some of the specific tasks of both roles.” (RP8)“So, we are offering two types of assistance to patients. One is what we called practical assistance?” (RP14)
Optimising family in continuing therapy at home
“There should be assistance nearby, you know, somebody who can help achieve the patient’s goals.” (RP2)“…give caregiver training to families of patients who need long term care, especially those who are bedridden. We can give them checklists……the patient’s medications, nursing care, positioning and other things…the therapists can teach all of these tasks.” (RP14)“I have seen a few cases in which the family plays their part, and I tried to do the same with our patients during intensive rehab…., you can see progress [in the patient] after a few months.” (RP6)“Actually, we can train family members…we can train them. To your question whether we can train them to do this [assist with basic therapy], yes…many of them can be taught. And I think if we do this over time…hmm I think we can start doing (this) in acute care…. We should keep teaching this to the family members [in an on-going basis]. Every time they come to physiotherapy, the physiotherapists train the caregiver. Essentially they have to go home and do the exercise for one week.” (RP2)“Actually for some basics, like for those of us in occupational therapy, basic ADL can actually be taught to family. But, then like I said before, that depends on who the main caregiver is…the one that will actually care for the patient.” (RP7)“If you’re talking about [caregiver training] yes…yes, the carer can be trained to do this at home.” (RP15)
“What the other thing we can do is train the family members, whether they have enough time or the initiative to do it, that’s another thing to think about. We even can train maids. Maids come and we train maids. But, maids now, they either run away or resign. It’s not easy.” (RP2)“I agree with Dr S, it’s not easy to train caregivers. Even in the ward we have problems identifying who the main caregiver is. So, it’s difficult for us to train caregivers on what to do at home. Even when we want to do a home visit to see what the patients do at home….to review equipment needed, how they go to the washroom, kitchen, and do other things, the problem is after we have trained the family, they pass the job on to their maid. Again the maid is doing the work.” (RP7)“I have seen a few cases in which family members, when the physio comes, they [family members] go to one side (corner) of the room, chit chat chit chat..(means talking). So, we cannot see anything, I mean the progress of the patient.” (RP6)
“Time is changing, you know. Children… they need to go to work as well, you know. They take care of their own goals. They have their own families. Children cannot take care of their parents while working; especially now that everything comes at a price. It’s making it [the situation] worse. They need more work.” (RP2)“In the long term, even if the stroke survivor is suffering from isolation, if they do, you know… there’s no contact, family members just don’t have time.” (RP1)“The children, sometimes, can’t even do small things. They don’t even know the meaning of stroke. I have a son but, you know, children nowadays, they can’t be bothered.” (SS8)“ I agree…they don’t know what stroke means. My family was okay initially…but after a while, they will complain. They can nag and say ‘you have been exercising a lot but still not recovered?’ (laughing). That’s what they say.” (SS5)“The children……through my experience, we can’t rely on them 100%, you know. They may have their own problems, their own stress. To depend on them, I think, that’s not possible, maybe a little. They have their own work, too. So, the only person is the wife.” (SS6)
“Whenever I do the exercises, my wife will be angry. She will say why did you do it (exercise)? If you fall, who’s going to look after you?” (SS5)“I wanted to walk outside but my wife scolded me by saying What’s wrong with you? You already had a stroke but still you want to go out.” (SS8)