Thirteen carers were interviewed. All eleven carers approached directly from the stroke ward and the rehabilitation centre agreed to participate but only data from nine of these participants are included here. In one case the tape failed to record and in the other the carer had misunderstood the nature of the research and was not interviewed. From 32 letters sent out by the GP, four carers agreed to participate. Interviews lasted from 30-90 minutes.
All carers spoke English although it was not always their first language. Eight carers had been caring for the stroke survivor for more than six months and the remainder for less. Participants included eleven spouses and two daughters. Eight carers were female and four carers were in paid employment (Table ). All ten members of the general practice team who were approached were interviewed. They included five GPs, two practice nurses, one nurse practitioner and two administrative staff.
The themes identified from the transcripts are presented for the participants as a whole because overall there were no striking differences between, for example, female and male carers and those caring for less than six months and those caring for longer. On the one occasion where there appeared to be a difference related to length of time caring, this is highlighted below.
Themes, illustrated by quotes, are presented below. Carers are described after quotes by e.g. 'husband' or 'daughter' but no demographic information is provided for the general practice team as they might potentially be identified. General practice team's perceptions are described after carers' perceptions.
Content analysis of the transcriptions identified several themes. There were some striking similarities in carers' and the general practice team's perceptions.
Satisfaction with support from general practice for stroke survivors
Despite the focus of the interviews being on the support carers would like, carers tended to talk more about the support their stroke survivor had received, rather than about support for themselves. Satisfaction with services was not the focus of the research but this theme is included as it emphasises carers' perceptions of the role of general practice as centred on care of the stroke survivor. Most carers frequently spontaneously said they were happy with the care their stroke survivor had received.
'He's kept an eye on us without sort of being on our back all the time.' Husband
Where there were criticisms they tended to relate to continuity of care, especially from large practices and to perceived poor follow-up after the stroke. Several carers questioned whether the practice was aware their cared-for had suffered a stroke.
'They didn't even know it (the stroke) had happened.' Husband
General practice as a place for support
When asked, carers frequently said they would ask for help from their general practice but usually described this in the context of the stroke survivors' needs rather than their own needs.
'I'm sure they would be supportive, let me put it this way, I think I haven't expected much support simply because they were very mild strokes and he hasn't needed any physical care as such. It's been mainly short term memory loss. .. it's mostly psychological and I haven't, directly approached the GP for assistance myself.' Wife
Low expectations of support for themselves
Expectations were generally low but were not always met. Few carers had expected contact from their general practice but on reflection thought it might have been very helpful especially initially.
'You know perhaps they could have rung up or called round but I wouldn't have expected it.... I think with hindsight, yes, I think I would have liked them to have rung me .... it's rather nice if your GP would actually spend 15 minutes with you, explaining exactly what happened.' Wife
Carers were seldom receiving support aimed specifically at them rather than the stroke survivor but they often believed, if requested, it would be forthcoming. If carers wanted anything, emotional support and health checks were mentioned but support from general practice was not always wanted. Some carers would like emotional support with their caring role but did not think this was general practice's role.
'I always regard them to do with medical matters rather than anything to do with the mind. I've got very good friends and I usually phone up and bore them for an hour with it. ... I just think of him as a medical man.' Husband
General practices perceived as reactive - 'They don't have time'
Lack of time was often mentioned:
'I've sort of been asked 'How are you?' and 'How are things?' but I have always sensed that time is limited. I don't know, I don't know what would be on offer if I asked, whether they have a counsellor.' Wife
Carers often would have appreciated proactive contact.
'... we've gone round there just to have the blood pressure checked at different times but ... they never say to us 'Well come every three months' or whatever - they don't say that..... actually I would have liked someone to have kind of put forward any suggestions or said 'Is there any help or advice you need?'' Wife
Some felt the onus was on them to request help if it was needed rather than it being routinely offered.
'... no nothing's forthcoming, but as I say I haven't contacted them so that's my own fault.' Wife
Time constraints or others with more pressing needs were used as explanations for not proactively being offered support. Carers emphasised not wanting to 'bother' doctors.
'Their surgery's always full of people children and everything - they don't have time - you know it takes time to speak to people like you are speaking now with me ..' Wife
Practical measures from recent policy
Carers were generally uncertain how personally helpful they would find a telephone information line. Typically they thought others might benefit but would probably not use it themselves. Some said they would prefer a drop in centre with face-to-face contact particularly for emotional support or where English was not a first language. However, several did comment that having access to email support in addition to a phone line might be good (although others stressed not wanting support via the internet).
'I think it would (be helpful) simply because, my experience and other people's ... it is quite often difficult to get through to your GP. ... I can imagine if I was looking after someone very disabled and I might just be at the end of my tether...' Daughter
'Yes I think that would be a big help - not that we need it but for other people .... because I know it's a bit of a minefield - not personal experience - but people I know.' Wife
Some expressed concern about how the helpline would operate. Carers highlighting their preferred choice of provider wanted volunteers with the right life experiences (because 'they actually care') rather than statutory services.
'I mean doctors, nurses unless they've gone through these things either through bereavement with people who've had strokes whatever ..... they don't really understand - they know what the situation is and the effects but they don't understand ...... you've got to experience something.' Wife
Carers felt such an information line could provide a variety of information and emotional support.
'I think a helpline should provide the emotional support ... someone to moan to or possibly you feel you can pass a problem to or get direction as to how you can solve that problem...' Husband
Some stressed the importance of availability, quick responses and personalised information.
'Well obviously it depends what information you want - if you ask them a certain question you want a specific answer - you don't want someone going all round the world ....' Wife
Emergency home-based respite
There was uncertainty of the value of emergency home respite. Carers saying they would not make use of it mostly said they would rely on their family or support networks. Having a stranger coming into their homes was regarded as potentially an issue for carers, stroke survivors and the rest of the family.
'My children and husband take priority - my family would not want that.' Daughter
Concern over the expertise of the person coming in to look after survivors was common.
'Yes -I know it's very difficult these days but you need to know that the person coming in is not going to bully patients... is going to look after them and is not going to get physical or anything like that...' Wife
However, some carers thought that it would be better than respite away from home and that it would be good to know it was available, if needed.
Carer training - Caring with Confidence
Of all the support measures presented to carers, carer training received the most positive response. All but one participant said it was a good idea in general but, again, many said they personally did not need it. Suggestions for types of training that could be useful included training in practical caring skills, information on available support, help with form filling, training in advocacy skills and looking after themselves. This was the only occasion where there appeared to be differences between the carers who had been caring for less than six months and those caring for longer. Newer carers were more likely than those caring for longer to say that they personally might benefit.
'I think it would be wonderful .... especially if they teach you how to go about things and be more assertive. I think that might (if it was really well done) almost eliminate the helpline ...' Daughter
General practice team perceptions
General practice as a place for information and support
General practice team participants acknowledged that caring can be challenging and that they were well-placed to offer support, advice and counselling. Local council leaflets are available in the waiting room and their practice leaflet has contact information for e.g. the Stroke Association. When registering at the practice and completing the practice registration form, new patients are asked say if they regard themselves as carers but this appeared to be mainly so they could be contacted if necessary.
'We are probably quite well-placed in that sense because we may know both the patient and the carer.... Certainly we will quite often see carers under stress or with mental health problems ... financial difficulties, difficulties getting benefits or difficulties getting access in the home. So there is quite a bit we can do. Usually we are one of the first points of care for those sorts of problems.'
However, some members of the team suggested their role was primarily acute care and looking after stroke patients rather than carers. Although the difficulties facing carers were recognised, seeking carers out proactively was not seen as their role. Ideally carers would identify themselves as carers to the practice team without being asked. This was at least in part because communication from hospitals could be unreliable and identifying carers can be difficult.
'I guess we could have a supportive role ... I mean we wait for people to come to us..... they may speak to us about how they are feeling or if they are struggling.'
It was thought that carers may not approach them because they appreciate the time constraints on general practice teams.
'But very rarely does the carer come because they might feel they are a burden or something and they don't realise they can.'
There was sometimes clear ambivalence about proactively supporting carers.
'... I'm wary of the fact that I don't want to just interfere in something that I might be hindrance to. If I can help, sure... so I would like to think they can always call us if need be. But sometimes they might ... just want to speak to a non-medical person ... obviously we are always quite busy so we've got a few minutes on the phone, we steal a few minutes here and there.'
Signposting and referral
Referral onto other services was seen as an important part of their role with general practice teams acting as a link. Referral to social services was commonly mentioned by participants but referral to third sector organisations was not. However they generally 'wait for people to come to us'.
'Caring ... is demanding, it is stressful and you know everyone puts a lot of attention on the patient with the stroke and they forget about the impact both psychologically and physically. I've seen a lot of elderly women who are very proud themselves and will do everything for their partners ... but they just carry on. .. I'll try and help them, and ask them if they need any extra help, social services, meals on wheels ....'
'... one or two have come in and said 'I need help' but usually it's a third party like a district nurse that's come to me and said 'I've seen this patient and they are struggling a bit, can you instigate some care packages?'... But very rarely does the carer come because they might feel they are a burden or something...'
Awareness of carers and the issues facing them but find identifying carers difficult
General practice team participants said they were aware of the challenges facing carers but stressed difficulties in identifying carers and carers' unwillingness to take up the general practice team's time.
'Some of them just get on with it and they don't want to burden us, they think we have enough on our plate, which I feel is really sad ... because we are here to help really. But a lot of people feel really proud, they feel that if they ask for help they are sort of letting themselves down ... it is up to the individual ...So yes, I haven't really seen a lot of people just come to me asking for help.'
General practice as reactive because of time constraints
The general practice team did not consider it was their role to be proactive primarily because of time constraints. Regular reviews were thought ideal by some but insufficient time both for the general practice team and other professionals meant this was unlikely.
'In an ideal world I would like obviously, carers having sort of regular reviews of carers coming in saying like every six months or so. Touching base with us to say, 'How have you been, are you coping well, do you need any extra help, would you like any more help, do you need a break?' ...but I know that can never happen because we are just too busy..'
'I have to say that primary care mainly reacts rather than being pro-active .... because we always have demands on the time...... if we were to find that somebody had gone out of hospital we wouldn't necessarily phone them up and say 'Is everything alright ?' We haven't got time really.'
General practice team perceptions of practical measures in policy
Opinions of a telephone helpline were overwhelmingly positive as long as those providing the helpline had appropriate training and information. It was suggested that face-to-face contact might be preferable to some carers. The need for reassurance for carers was stressed. Several highlighted the importance of offering accessible information on benefits, financial support, services and medical conditions.
'Or maybe there's a fear of it happening again, what should you do, will the symptoms improve....? Maybe information on talking to other people that are going through the same thing, information on diet... and is there anything they can do to make them better or help them be more healthy.'
'So maybe it's just enough if you're having a bit of a panic you obviously can't phone the GP all of the time and a lot of people don't like to disturb the GP.... you've only got your ten minutes to see your GP and you might have to wait a few days ... if it's something small and you think 'Oh I don't want to bother the doctor about it'.'
Those mentioning possible providers thought it should not be run by general practice but by local third sector organisations. It was also stressed that a phone line should not simply redirect carers to general practice. This is partly because of time constraints and partly because they did not feel they were always the best equipped to offer the support.
'I think it would be independent. Primary care has got a lot on its plate.'
'There are some things which other people would do better than GPs. GPs generally don't have the details about benefits, or social services or even the sort of care that can be provided ....'
Although general practice team participants were asked about emergency respite, they consistently answered in terms of planned respite. However, they recognised that whether planned or emergency respite there were both advantages and disadvantages in home respite and that it might be down to individual preference.
Carer training - Caring with Confidence
Opinions were mixed about carer training but were similar to those of carers. Those in favour tended to think training would benefit carers perhaps by helping them learn to look after themselves and increasing their confidence in their caring skills. It was suggested that carers might like training in practical issues such as diet, back care, lifting and handling and aids. Training in problems specifically associated with caring for a stroke survivor such as depression and personality changes were also highlighted. Some commented on issues surrounding provision of the scheme, such as ensuring ready accessibility. Opinions were divided about possible service providers but frequently both professional input (e.g. from therapists) and voluntary sector input was considered necessary.
'You'd want a carer that's been through it .... as opposed to a health professional going 'This is what you need to do' but then a health professional ... you feel like they know what they are talking about ....'
'.. the basic stuff about what's happened and then maybe about back care, how to mobilise safely for the relative and for themselves so they don't injure themselves, diet, what to do if this happens again. And where to go for support if you need it.... bathing, washing and if there are any aids that might help.'