Background
Methods
Recruitment of participants
Inclusion | Exclusion |
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18 years and over | A history of mental impairment that would suggest that they would be unable to give informed consent to participate in the study |
Diagnosis of haemorrhagic or ischaemic stroke | Unable to communicate in English |
A history of violence towards members of the primary health care team or other health professionals | |
A terminal illness, other than stroke, with life expectancy less than 6 months |
Data collection
Data analysis
First fifteen interviews
Second fourteen interviews
Overall analysis and creation of the conceptual model
Results
Participants
Treatment burden
Type of treatment burden | Healthcare workload | Care deficiencies |
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Making sense of stroke management and planning care | • Understanding symptoms, investigations, treatments, risk factors • Information gathering • Taking responsibility • Goal setting & prioritising • Problem solving • Managing uncertainty & maintaining motivation • Developing coping strategies • Coping with negative emotions | • Lack of information provision & poor signposting • Information hard to understand • Poorly timed information • Not enough verbal information • Not tailored to individual • Lack of support with care planning |
Interacting with others | • Seeking advice or help from health and social care professionals • Gaining support from friends, family, fellow patients • Strained relationships • Protecting carers • Stigma | • Misdiagnosis • Paternalism • Lack of understanding • Mismatch in ideas • Poor access to GP • Poorly co-ordinated care • Poor continuity • Poor communication from GP |
Enacting management strategies | • Acute care • Inpatient rehabilitation • Discharge home or to care home • Community rehabilitation • Outpatient appointments • Medications • Risk factor modification • Co-morbidities • Adaptations to home • Home care • Return to driving and employment • Mobility aids • Finances • Enacting coping strategies • Psychological adjustment • Alternative therapies | • Waiting times as inpatient • Unpleasant ward • Poorly supported discharge • Poor GP follow up • Poor follow up for milder cases • Lack of help with transport to appointments • Complicated medication regimes • Poor access to home adaptations and walking aids • Substandard home care • Poor access to driving assessment • Complicated benefits system • Lack of psychological support and support groups |
Reflecting on management | • Routine appointments for review • Joint healthcare decisions • Reflecting on progress • Non-adherence • Keeping up to date • Worry about another stroke | • Lack of review for milder cases • Poor long term follow up for all |
Making sense of stroke and planning care
Participants had to work to make sense of different types of stroke, investigations, treatments, and the roles of different health professionals. They had performed self-directed research to collect information.See I was under the impression before this happened to me that a stroke meant something to do with the heart or something like that. I didn’t know exactly what it was. And when I started to get information I realised what had happened to me medically…I’d say for the first day, twenty four hours it was hard to take it all in. (Participant 9)
Many described spending time planning their recovery, which included setting and prioritising goals. Participants described cognitive processing such as problem solving, dealing with uncertainties of how well they would recover, and maintaining motivation.We did (look up information) because with the stroke thing we were up there, they send you quite a bit of information. The one that we are affiliated to…chest, heart and stroke. I’ll show the book I've got one in there, the magazine things. (Participant 7)
Enduring care deficienciesI think it was will power with me that brought me back to life. Will power I think it was to get me back you know so I got up and I done it even though I didn’t feel you know I still done it you know. (Participant 16)
Some felt the information they were given was difficult to understand and poorly timed. Many found written information helpful, but accompanied by insufficient verbal information from health professionals. Some participants appeared confused about where to find information themselves after discharge from hospital. Interestingly, several participants, mostly female, preferred to not be given information about their stroke in case this caused anxiety.No I don’t think they spoke enough. They never let you know what was, exactly what was happening. And you didn’t get much feedback off them… they just don’t give you any information on how its, how to avoid it, how it’s happening, stress things like that. They just don’t tell you anything. It’s just a case of take these tablets. And you’ll be all right. (Participant 13)
Participants less severely affected by their stroke tended to feel the least supported by health services with regards care planning.I don’t, I don’t look into anything because I think in my mind what I don’t know I can’t think about. (Interview 22)
Okay I was a very mild case; I’m not complaining bitterly that nobody was there to back me up. But I feel it would have been good for someone to say hey we’ve got a couple of wee tests here just, let’s see how you do this. And say yeah you are doing it better than you did three months ago or two months ago and there was nothing. (Participant 15)
Interacting with others
Some reported negative interactions with family members due to the strain of managing their stroke. Participants did not always like to feel reliant on others, and many did not like the stigma attached to needing care.See I don’t phone the surgery I go down there for half past eight. Because if I phoned looking for an appointment for that day, I've no car now so if she said I’ll give you an appointment for quarter to nine I would never make it down for quarter to nine so I go down there and wait for them opening and… I get an early appointment. (Participant 6)
Several participants reported a lack of time with clinical staff during their hospital admission, leaving them feeling isolated on the ward, particularly at weekends. Despite this, most spoke highly of their therapists on the ward and in the community, with very rare reports of unsatisfactory encounters.And then in the morning when she came round to give us the …say for instance I get six there was only four and I said to her there is only four there I think I should get six and she went oh well what one’s is it that’s not there, that’s missing and I went I don’t know… and I had to wait for the staff nurse to come in. (Participant 20)
Several participants reported incidents involving poor communication between their family doctor and other health or social care professionals. One man was nearly prescribed harmful medication due to poor information exchange between his family practitioner and pharmacist.But they advised me to come off the amiodarone but that was all they said, they said they would write to my doctor. So the next thing I knew there was two items on my prescriptions. But I had, I had never heard of them you see and I thought I don’t think these are mine you know. (Participant 6)
Most described their primary care appointment system as satisfactory but some described waiting times of 2 weeks or more.There was a chemist I had to go down and see at the health centre one day and he wanted to discuss my medication. And he said you are needing to be on, they took me off aspirin when I had the stroke and he said you need to be on aspirin, I said no I think from what they said that caused me the problem, oh no you definitely need to be on aspirin and I said well I’m not going to take any I said you better go and check up on that so he went and I don’t know who he spoke to and he came back and he said you are right you shouldn’t be on aspirin because I had a bleed. (Participant 2)
Not all patients felt that seeing the same doctor was important, but some described continuity in primary care as lacking. Access to the out of hours health care service were also described as difficult by some. This was generally considered worse than access to services during working hours.If you can get him to come out to the house you know, a lot of them don’t come to the house you know. Yes to get there you know. (Participant 12)
Yeah now the chemist said that it was all right to take the statin in the morning as well, my other doctor said he thought it was better at night. (Participant 20)
Enacting management strategies
Institutional admissions
Many described their therapies in hospital as frightening, for example climbing stairs unaided for the first time.But I made my mind up that I was going to get up and walk again and I just pushed myself and pushed myself. (Participant 2)
Some felt the ward had been unpleasant due to very unwell patients being mixed with those who were more able bodied, noise at night, poor food and a lack of stimulation. However, one lady said this had motivated her to get better. Some had received personal care such as help with toileting from nursing staff during their stay and these individuals reported the standard of nursing care as very high.When they took her there we waited well, that took about four or five hours because the doctor, there was only one doctor on and he was rushed off his feet, he apologised, he said, they came and gave us tea we waited that long then they came back and they said he asked me what you’re asking me, start from the beginning. (Participant 16)
Managing stroke in the community
Most described working hard to achieve goals by practising exercises on their own in between appointments, and making lifestyle changes such as stopping smoking and modifying their diet.Oh aye, physios came. Aye they come out to the house with us, occupation therapy, they were great aye, they were great. They were coming out weekly. (Carer: three times a week.) Physio and occupational therapist, you know they done, they were a wee tag team. Aye I did, I had a busy time (Participant 10)
Several blamed poor communications between care providers as the reason for poor follow up, resulting in patients having to chase up appointments or results. Many with milder disabilities felt that there was a lack of community therapies available. Those with more severe disabilities tended to describe more comprehensive follow up that involved either home visits from the community stroke team or visits to the outpatient department for several weeks after discharge. Services such as cardiac rehabilitation and the day hospital were reported as helpful, and the community stroke teams were often described as excellent and well co-ordinated.Carer: I mean they didn’t, they told us what we would need to do but they basically threw her out and that was it, that’s it, you are in charge of her….and they said oh there is this available and that available and I had to organise it all. I had to organise her physiotherapy, young person’s place over in Shettleston. (Participant 12)
Many participants felt that primary care support was lacking following discharge from hospital.I did go by the ambulance service a couple of times; you know the wee mini bus. But it was, I had to wait five hours for a lift coming back from hospital you know. And I never had any money or food or anything, you know I felt as if I was going to pass out. (Participant 10)
Only two participants reported good support from their family doctor immediately following discharge, which appeared to have been arranged ad hoc rather than formally requested by the hospital. Both of these participants lived in fairly affluent areas (SIMD 7). Several participants had been given a contact telephone number for secondary care to call if they needed advice or help. This appeared to make patients feel empowered and reduced waiting times for expert advice.I thought maybe a couple of days somebody just to look in. Because as you said beginning even moving, making your tea, making your dinner, I’m awful tired after that, nobody came in. (Participant 8)
Participants were generally very happy with the pharmacy delivery services they were receiving; however, two did not like that they lost control of which tablets they could request each month, fearing that mistakes may be made.Well they’ve just changed one of them, it’s the same stuff only… it’s got no days on, most of them have Monday, Tuesday, Wednesday so if I go today and I see Monday’s there I know I’ve forgotten one you know…they've changed one of them and its got no bloody days on it at all. (Participant 5)
Once adaptations had been made, some participants found them unsatisfactory so had to remove them, for example one lady had been advised to replace steps outside her house with a ramp, but the ramp was not flat so she could not use her quad stick on it. Those who had to move house due to disabilities following their stroke reported long waiting times.I did try and get a shower cabinet in for him…because it’s awkward for him getting in and out the bath. I’ve got the shower above the bath…but it’s very awkward for him getting in and out the bath. No we will not get it we’ve been told, there is not much, there is no money for it. (Wife, Participant 10)
No because they don’t, they can’t do the things that you need. Well see like if you are, say for instance sake, windows, can’t do that. (Participant 7)
Reintegrating into society
Enduring care deficienciesYou would send in the sick lines and they would get lost in the work and then my benefits would get stopped…. So I just had to keep on top of them and then I had phoned the DHSS.. (Participant 19)
But I had to wait months; I had to wait months to get the right money if you know what I mean, the DLA (Disability Living Allowance) and that. I had to wait months for that… (Participant 28)
Adjusting to life after stroke
I don’t make it obvious that I’ve got bad balance. I tend to just touch things when I’m passing. When I go out down the steps… I put my hand on the privet hedge there, find a good strong branch that I know about as I’m going down those extra steps. (Participant 5)
You know they were people maybe in their late seventies, eighties, some people ninety and they didn’t want me because I was only just turned sixty and they, in their eyes there was nothing wrong with me and I didn’t look to be anything wrong with me but it was all in my head, it was psychological. (Participant 20)
Reflecting on management
A few expressed an interest in keeping their knowledge of stroke management up to date; however, most appeared uninterested and many would rather leave it in the hands of health professionals to alert them to new treatments.I think realistically its every six months. They call me in; they call me in to do it because I’ve had a stroke for example. They call me in and say it’s time for your checks yeah, they maybe take four blood tests. They maybe take a cholesterol check, test; yeah I think it would be every six months actually.(Participant 15)
Enduring care deficienciesThey show you how to get down on the floor and to let yourself go and to try and crawl and if you can’t crawl just lie for a minute or two, move your head to see your head is all right, move your arms try and wiggle your toes and then you bring yourself to the nearest object that is solid…That you can get to, that’s if you’ve not got this thing round your neck. (Participant 7)
Many patients also described longer-term follow up as poor, and this appeared to be independent of stroke severity or whether initial follow up had been poor. Poor long-term follow up resulted in medications and treatments not being reviewed for long periods of time and confidence in longer-term treatments being low.No only I do keep coming back to the thought that I feel someone should have been there, someone should have been there to be able to, to be able to say to you are doing okay, just keep going the way you are. (Participant 15)
A few reported deliberately not following medical advice after reflection on their own wishes. Reasons given included side effects, over complicated treatment regimens that they wished to simplify and a mismatch in ideas with health professionals.But I just feel as if they think well we are maintaining, I’m on a lot of medication you know and as long as nobody ever says we’ll review that or anything and I’ve been doing that I’ve been taken all that for four years, I might not need it. (Participant 20)
Patient capacity
Type of patient capacity | Factor affecting patient capacity |
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Personal attributes | • Positive characteristics e.g. resilience, independence, patience, humour and determination. • Negative characteristics e.g. disorganisation, poor engagement with health services, worry, frustration. • Knowledge and past experiences e.g. of stroke or other illnesses. • Practical capabilities e.g. physical, visual, hearing. • Cognitive capabilities e.g. memory, problem solving. • Skill set e.g. internet use. |
Support network | • Friends and family that give practical and emotional support such as information gathering, medications and transport to appointments. • Volunteers / charities. • Support groups and other stroke patients. • Employment that provides a support network. |
Financial status | • Financial struggles e.g. loss of income, delay in benefits. • Ability to pay for own mobility aids, adaptations, private healthcare or home care. |
Life workload | • Co-morbidities. • Employment. • Dependants e.g. spouse, children. |
Environment | • Geographical location e.g. distance from hospital and transport links. • Home environment e.g. stairs, access to house. • Availability of aids or gadgets. |
Personal attributes and skills
Several described using project management skills, for example to develop reminder systems for appointments. Those who had distanced themselves from health services communicated a sense of relief at avoiding treatments, yet felt more unwell and less able to cope with their everyday lives. Disorganisation, poor knowledge and negative thinking all decreased patient capacity.I just kept saying I was dead positive, I just decided that you know okay I’m like this and I’ve got to do my best to get on as well as I can. (Participant 18)
Some lacked the necessary skills to use the internet; most participants displayed a lack of interest in this.Well it's always on my mind that I could (have another stroke) because they say you take three strokes, a lot of people have told me that and I knew that myself you take three strokes. (Participant 16)
Physical and cognitive abilities
Those with visual, hearing or cognitive difficulties had struggled with logistical work such as organising tablets.I won’t be stubborn I’ll say to myself I’m needing a doctor I’m going to phone so but recently I’ve been phoning the wrong numbers. I know the numbers but my hands don’t … and I phone different people in fact some people now realise that it's this silly old woman. (Participant 21)
Because sometimes we forget to take, she forgets to take her tablets. Now and again. Sometimes she remembers see she takes wee lapses of memory loss, she’ll maybe remember and then she’ll forget. (husband, participant 16)
Support network
Many highly valued the company of other patients and visitors during their hospital stay; this had improved their mood and maintained motivation for recovery.The warfarin one my daughter always makes sure I take it. (Participant 18)
Women more commonly relied on their family to help with transport, whereas men more commonly obtained help with medications. Some chose to not ask friends or family for help as they worried they may be a burden; others had no-one to ask. Both of these groups described a feeling of isolation which increased treatment burden, for example a lack of help with transport meant relying on public transport or patient transport systems which were often substandard. Many described support groups as helpful. Those who were employed described their colleagues as a source of support.So the woman from the chest, heart and stroke volunteer came every Wednesday to talk to me. And do quizzes with me and just generally ask about my family and all that sort of thing and that went on for the 13 weeks while I was still in hospital and that was great. (Participant 25)
The doctor at one point sent me to a stroke society place to speak to people and it was very, very helpful because there are people there the same as you (Participant 22)
Financial status
Those with more financial resources could lessen their burden by paying for assistance in the home. Almost all of those who needed to install a walk-in shower had opted to pay themselves due to the perceived poor quality of local authority equipment and long waiting times. Some reported that they had been given financial aid by relatives to make adaptations to the house or gain mobility aids.Well I’ll tell you, see the home help I pay that every month, £161.40 a month right and they were sending the bills in when I wasn’t getting money to cover it right. And I went like that I says listen nobody is getting paid, gas, electric, TV licence, nobody is getting paid...(Participant 28)
I get Moira… I’ve got a little board up in the kitchen or in the hall and it tells me what days Moira is coming and how many hours…It's not through the home helps if you know what I mean… this is done privately. (Participant 21)
Life workload
One lady mentioned stress at work as energy consuming and four participants reported being a carer to someone else. For those with dependents, availability of respite care increased capacity.But then I’ve got problems with my legs, I’ve got lymphatic oedema in my legs so my legs are really heavy and I’ve got arthritis in my knees so some days it's really hard. (Participant 18)
My husband suffers from senile dementia so I had this to contend with and even in the hospital I’m trying to organise things that were going on you know. (Participant 22)
Environment
Regarding the home environment, those who had been given access to mobility aids and adaptations were able to self-manage more successfully.When somebody tells you we want you in (at the hospital) every morning at 10 o’clock to take your blood sample so we know what warfarin you should take tonight…and so and I thought this is ridiculous we’ve got a medical nurse, health clinic in (the local town)…why am I going in there? (Participant 24)
Technology was not commonly used; however, one man with aphasia described using an application on his tablet device to practice word recognition.She gave me a grid for my bed, for under the bed to hold onto to get up. It's a grid you put under your mattress. And I hold onto to it to get me up you know. (Participant 16)