determining the needs of spouses caring for aphasic partners

DISABILITY AND REHABILITATION, 1998; VOL. 20, NO. 11, 411-423

Determining the needs of spouses caring for aphasic partners

ASHLEIGH DENMAN Speech and Language Therapist, Gloucestershire Royal NHS Trust, Great Western Road, Gloucester GL1 3”. UK

Accepted for publication : January 1998

Keywords aphasia, communication, carers.

Abstract

Purpose: The study aims to identify the needs of spouses caring for someone who has communication difficulties due to a stroke and to determine what solutions they felt would have helped to alleviate the difficulties they described. Method: A qualitative approach was chosen in order to determine the carers needs from their point of view. Nine in- depth interviews were undertaken with a self selected group of spouses caring for an aphasic partner in their own home. Results: Analysis of the interviews indicated that the carers expressed needs in the five main areas of support, information, role change, training and day/respite care. The carers interviewed were also able to identify a variety of practical solutions which, in retrospect, may have helped them to care more effectively for their aphasic partner. Conclusions: The solutions put forward by the carers high- light the areas in which the Health Trusts providing care for these people should focus future service provision in order to ensure that people caring for aphasic spouses in the home receive the services they feel they need.

Introduction

Carers are a sizeable and important group. Rossiter and Wicks’ estimated that there are 1250000 carers in Britain. However, it soon became clear that this was a gross underestimate. The 1985 General Household Survey into Informal Carers2 showed that there are actually 6 million carers who are caring for an elderly or disabled person, which is equivalent to one adult in seven. The vast majority of all care giving is provided by family members in the community. As much as 80% of care is given in this way according to Jones and Vetter.3 By the carers doing the work of caring Sadler4 estimated that they are saving the nation in the region of E7 billion pounds each year in terms of the cost of services that would be incurred were they not providing this care. Many aphasics are cared for in the home by their partners, and it is this group of carers upon which this study focuses.

With carers providing such a large amount of support for the elderly and disabled in our society, the need to support carers is obvious. This need has been identified in Government white papers, and has even been described as the ‘first task’ of publicly provided services.’ The ‘major contribution’ of carers to community care has been acknowledged in a Government white paper, Caring for People,‘ and the responsibilities of community care were clearly set out in the Government white paper Growing Older7

The primary sources of support and care for elderly people are informal and voluntary. These spring from personal ties of kinship, friendship and neighbourhood. They are irreplaceable. It is the role of the public authorities to sustain, and where necessary, develop - but never to displace - such support and care. Care in the community must increasingly mean care by the community.

In 1989 the white paper which focused specifically on community care, Caring for People,’ set some key objectives, which included the promotion of the development of domiciliary, day and respite services to enable people to live in their own homes wherever feasible and sensible, ensuring that service providers make practical support for carers a high priority and that services should be flexible to enable clients and their carers to exercise choice.

This paper also stated that it should be a key responsibility of statutory service providers to do all they can to assist and support carers. An Implementation paper following on from the original white paper8 stated that the provision of services should be on a needs-led basis, allowing for carer participation.

A recent literature review stated that there is little research examining what the carer wants and needs’ and a survey of community carelo showed that there is limited involvement of users and carers in the care management process. It does, therefore, appear to be the case that ‘many professional interventions are inappropriate,

0963-8288/98 $12.00 0 1998 Taylor & Francis Ltd

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irrelevant or unavailable because the needs of the carers have been overlooked."

It is only in the last 1&15 years that the role of the carer has become an accepted one, and so, consequently, there is limited research in this area prior to this. The majority of carer research appears to focus on the types of burdens from which carers suffer, the way they cope with these and evaluating techniques which aim to improve the carers situation. However, the methods used to try to improve the situation for carers should be based on the carers self-identified needs, and it was to determine these needs in a specific group of aphasic clients that this research was carried out.

Methodology

CRITERIA FOR INCLUSION IN THE STUDY

In order to be considered for inclusion in the study the

0 Is known to the Stroud Locality Community Speech

0 Had a stroke at least 12 months ago and continues

0 Had been visited at home by the Speech and

person had to be caring at home for someone who:

and Language Therapist ;

to have some residual aphasia; and

Language Therapist within the last 6 months.

SUBJECTS

A letter was sent out to all carers who met the criteria for the study. The letter briefly explained the study and what would be involved if they agreed to participate. If subjects wished to participate they were asked to return a tear off slip on the bottom of the letter in a stamped addressed envelope provided.

Letters were sent out to the 15 carers who met the study criteria. Nine carers replied that they would be prepared to take part in the study. Two carers replied that they did not wish to participate and four carers did not reply. This is a take up rate of 60%. Of the nine carers who agreed to take part, six were women and three were men. All cared for their aphasic spouse at home. Nine semi-structured interviews were subsequently undertaken with these self-selected carers.

PROCEDURE

The interviews were carried out in the carer's own home at a time convenient to them when the person that they care for was: out at a day care facility; being cared for by someone else; or out of earshot in another room

listening to the television or radio. Before the interview started the interviewee was asked to sign a consent form agreeing to take part in this study, agreeing to allow the interviewer to tape record the interview and explaining that the recording will be destroyed once the research has been completed. The consent form also stated that the information gained would be kept confidential, and the results of the interview would be kept anonymously. The interviews lasted between 30 and 60 minutes.

An interview schedule was used to provide a loose structure for the interview, and to attempt to ensure that all areas of interest were covered in each interview. The interview schedule covered five main areas. These were:

The carer's perception of their needs; The carer's perception of the help available;

0 Information about the carer's actual access to

The carer's satisfaction with the levels of service

0 Services that the carer feels they would like or

services ;

received ; and

would have liked.

DATA ANALYSIS

A full transcription was made of each interview from the tape recording. Each interviewee and the person that they care for were ascribed pseudonyms which were used in the transcription and the writing up of the findings. Place names and family names were also altered to ensure anonymity. Common themes were identified from the transcripts, and these were analysed and are presented in the findings.

Findings

Five main areas were identified from consideration of the transcripts which were support, information, role change, training and day/respite care. These will be discussed in detail below.

SUPPORT

One of the key objectives in the Government's white paper 'Caring for People'' was that service providers should ensure that they make practical support for carers a high priority. Considering that 7 years have now passed since this white paper was published, it would seem reasonable that support mechanisms should have been put in place. The importance of support for carers was documented in detail by Robinson12 who considered it essential.

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Needs of aphasic partners’ carers

Nolan and Grant” identified three types of support that carers receive. These are support from the family, support from friends and neighbours and support from outside agencies. The comments made by the interviewees about support will be initially considered in these three categories.

Support from the family

In all but one case, carers did not receive adequate support from the family. This was either due to the fact that family members lived a long way away,

All my children are miles away, one in Scotland, one in Germany. Although they came, my two daughters came down very quickly for a night or two just to see him, they couldn’t obviously stay, they have four children each, so I don’t have any relatives to help whatsoever (Margaret)

or that they choose not to help,

Q : Do you get much help from the family? A: Very little, very little. No not really (Leon).

In some cases family members will do things for the disabled person,

Now it’s just visiting their mum for a couple of hours, helping with her hair, my one daughter cuts it and does her hair once a month or whatever but other than that, no, we don’t get any help (Leon).

Although they do things for the disabled person they do not offer to support the carer,

I don’t think the family can be relied upon at all to be there. I mean, they might pop in now and again but I’ve not known anyone say to me, ‘You have a rest dad and we’ll take over today’, it just doesn’t happen (Nick).

Martyn13 found that family were not felt to be supportive after the initial phase when the person was in hospital. It may be the case that the family are not sure what they should do to help, and the carer is not prepared to ask for the help that they need from the family, as they feel the family should be willing to provide the help, and know what help to provide, without being told.

But family, I don’t think they are aware that people need help. I suppose if you ask for it, but if you have to ask, then it’s not worth having (Nick)

(Talking about her children) The first year was pretty awful, they didn’t come as often as they could, I don’t think they realised we needed them (Dorothy).

Parents may be unwilling to ask for help from their children as they wish to appear to be independent and coping with the situation and are too proud to ask for help. The case where the carer got good support from his family may have been due to the situation. His two grown-up children still lived at home, could see the help that was needed and were happy to offer it,

What happens on a Saturday morning, for instance, Jane gets her mother up and dressed, and all the rest of it, and I have a long lie in. Jane is here most of the morning and Andrew is here as well, so I can go out then. On a Sunday morning Andrew does it (John) .

Family support is important and good family support has been shown to decrease the stress of caring.14

Support from friends and neighbours

Only four of the carers mentioned the support that they receive from friends. This may be due to the fact that, like the family, the friends provide the carer with little support. Martyn13 found that friends became less involved once the person being cared for left hospital. One of the carers who spoke about her friends and neighbours received extremely good support,

I have wonderful friends and neighbours. They were most supportive, and I couldn’t have managed without them. I really couldn’t have managed without my friends and neighbours (Peggy).

For another carer, her neighbours were less of a support and more like someone to pass the time of day with,

You don’t make friends of your neighbours, you’re friendly with them but you don’t become close to them, you know (Dorothy).

The third carer felt that contact with friends tended to be lost following a stroke,

You tend to lose contact with friends, mainly because you are too busy at the wrong times (Nick).

The fourth carer who mentioned friends was John, whose wife’s friends still come by from time to time to chat to his wife, but don’t provide any support for him.

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There are, therefore, ‘ Good Samaritan’ figures13 who offer help to carers and the person they are caring for, but the type of help they offer and the regulatory varies considerably. Some carers appear to have no access to such people.

Support from outside agencies

The interviews showed that carers felt that support from outside agencies is limited. Most of the carers felt that they were expected to get on with things,

Nobody has been to see if we were coping or anything (Dorothy). Q: Was there anybody who came to see how you were getting on? A: Absolutely no one at all. I can’t remember anyone coming to ask if I was managing. There were certainly no professional bodies to come round to see if I was coping. Q: So you were just expected to get on with it? A: That’s right, pick up the tools and work (Nick). At the hospital some nurses and various people get together and see what the best thing would be to help you, but you don’t have enough input (Dawn).

This feeling is borne out by the fact that community health care professionals were shown to only give 2 YO of their time to carers15 as they fail to perceive work with carers as a legitimate professional role.“ Martyn13 found that professional support was insufficient as the system is stretched, and MacKenzie et aZ,l’ found that there were inadequate speech and language therapy staffing levels throughout the UK for stroke patients.

Although service providers do not seem to be providing support for carers, one carer interviewed attended a carers support group which he found to be very useful in providing peer support,

You definitely get support from that sort of group, because they can put you in touch with other people. You are aware then, you get leaflets come through to the carers group from all types of places where you can actually phone up for information (Nick).

Lack of support

The interviews carried out for this study revealed, as discussed above, that the majority of the carers felt they had a lack of support in all areas. Eight of the nine carers

interviewed mentioned some aspect of lack of support during the interview, saying things such as,

I do feel that I have had no support at all (Dorothy).

The types of support that carers felt that they lacked varied from carer to carer, dependent upon their individual situation, but similarities were present. Three carers felt that they needed help to get organized and establish a routine when the person they were caring for first came out of hospital,

It would have been handy, obviously, if I had a nurse there to help me to get myself organized, it was a quite dramatic change to both of our lives, not just Susan’s but both of us, and having to care for her rather than just coming in treating her as my wife, it’s quite a dramatic change, so if you had someone in to help you along, to put you on the track, would have been a good idea, but you don’t get that.. . (Leon).

Having support at this stage may have helped the carer to cope with the ‘dramatic change’ that he was experiencing at that time. However, other carers felt that the initial level of support was sufficient, but that it quickly diminished,

I think you know that you are flooded for the first week or two with help and then it’s withdrawn. So you are very much on your own, not very much help at all (Nick). I had to do a lot myself (Margaret).

Nick stated that he felt the level of support should be maintained throughout the carers career,

I think that you need support all the way through, albeit from a distance (Nick).

Another area where support appears to be lacking is the opportunity for carers to discuss their situation with someone outside the family

I mean there are times when I feel I could break down and cry out there, it does happen, it gets on top of you, you feel that is the time you need somebody pretty close. You feel, right, I need to talk.. . There are times when it really, really gets to you and you just think where do I go from here, what can I do to change all this. You can’t change it, it’s there, you have to deal with it the best way you can. If there is someone you can talk to, it always helps, but there is not always someone there (Leon).

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This finding is backed up by research carried out by Martyn,13 who found that carers needed to talk about their experiences in order to relieve some of the burden of caring.

The lack of support that carers feel they have means that as well as coping with the day to day care of a disabled person, they also have worries and fears about what would happen in certain situations. Leon was concerned about what would happen in an emergency,

There should be someone on call (Leon).

Sarah was concerned about what would happen if she became ill,

I’ll tell you the thing that frightens me most, I had a really bad tummy ache the other day and I thought, ‘what happens if I’ve got appendicitis, and I am rushed in, who will look after Terry’. That sort of thing really is quite frightening, if you stop to think about it (Sarah).

The findings discussed above appear to corroborate what was found by Walker et al.” which was that two thirds of informal carers receive no support at all. The care is provided by one family member with help from a wider network being minimal or absent” and an individual is bearing the burden of care unaided by family members or statutory service^.^ Carers feel desperate if they do not have appropriate support,

There are times when you feel, you know, you could just walk out of the door, and say I’m not going back. That’s the feelings you get sometimes (Leon) Q : So how have you felt about that? A: Desolate, sometimes. I could have done with someone’s shoulder to cry on. (Dorothy).

In order to prevent such feelings of desperation, carers need support in order to help them to continue to care.lg Provision of support has been shown to increase satisfaction and decrease the stress of caring’l which is due to the consistent and unremitting nature of caring.20 As the white paper ‘Caring for People” stated, carer’s lives can be made much easier if the right support is there at the right time.

INFORMATION

Provision of appropriate information has been called the ‘key in the engine”l to access services that are needed. That is, without information the carer does not know which services they are entitled to and so is unable to ask

for them. Carers should have the right to choose an appropriate model of care,ll but they will be unable to do this without full information. Comments made by the carers interviewed in this study show that they do not feel that they have access to appropriate information,

The very first thing I think was needed is more information, a lot more information. When it first happens you’re confused, you don’t know who to turn too, it’s just lack of information, they give you leaflets and then bombard you with it but nobody patiently explains the procedures and your entitle- ment. I think that’s the biggest stumbling block (Nick) I had no information given to me except what I found out, like ringing up the hospital volunteer group (Margaret).

Types of information

During the interview the carers identified three main types of information that they required. The first of these is information about the condition from which the person has suffered,

What I found I didn’t get was advice. I saw a speech therapist in the hospital and it was obvious even that early they knew he was going to be dysphasic. Nobody told me what dysphasia was, nobody gave me any indication on how long it would be before his speech would return, not only how long, but how long it would take for him to become anything like normal. Nobody told me that even when he started to talk he would have difficulty, not only with speaking the words, but saying the correct words. I wasn’t prepared for the fact that he often said the opposite to what he meant. Nobody gave me any indication of any of this. I was just told it would be a long time before he would be able to talk (Dorothy). I wasn’t aware of how difficult it was going to be for him to speak (Alma).

The second type of information that the carers required was information about what they were entitled to financially,

I needed more information as to what my entitlements are (Nick). I was given a bundle of leaflets, but not one that says ‘You are now leaving a hospital, with your husband whatever, with a patient, you may need’ and then a list of things (Sarah)

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Thirdly, the carers also felt that they needed information about the services that were available locally. In order to find out what services they could access, they often had to find out the information for themselves, one way or another,

I did have to do an enormous amount of telephoning. I remember I had a whole file on the kitchen table of addresses and phone numbers, looking for this and that, and different help with things (Margaret).

Antonson and Robertson’’ found that carers have a lack of awareness of services, and this is not surprising considering how difficult it appears to be to find information about the services.

Methods of accessing information

variety of different ways. These included : The carers interviewed had got information in a wide

Information from books I got a lot of books back from the stroke club, all about strokes and dysphasia (Margaret); Information from the doctor No-one will actually come and say, ‘well your entitled or your wife’s entitled to the orange badge’. Well in my case I had to ask the doctor how you go about it, he didn’t offer the information at all to start with (Nick); Information from leaflets I was given a bundle of leaflets (Sarah); Information from a carers group (Talking about a local carers group) It’s ideal yes, it’s somewhere you can exchange ideas, we do get information from guest speakers, you yourself know that, you’ve turned up for a small group, and you get help through information from speakers and such like. I think more people are aware of what they are entitled to or what then can have (Nick); and Information gained by chance Q: The carer that you have got, how did you come by her? A: By accident, I was talking to somebody about caring and they said ‘have you heard about Crossroads?’ (Leon).

Six of the carers interviewed felt that the information was available, but that you had to know where to go and what to ask for in order to be able to find the information. This appeared to be one of the most frustrating aspects of gathering information for the carers,

They are all available if you know what to ask for, but I didn’t know, that’s what drove me mad (Leon). A lot is available if you know what to ask for and where to ask for it (Sarah).

It was also the case that even though information was available, it was not available in any co-ordinated form,

I found 15 different agencies I think all dealing with different things, but there was no co- ordination (Dawn).

Consequences of the provision of relevant information

Nolan and Grant” in their study of carer’s needs found that one of the largest problems was the failure to provide appropriate information and advice. However, it has been shown that the availability of relevant information leads to a reduction in carer distres~,’~ an increase in control and an increase in informed choice.“ The issue of power and control is a very important one. KautzmannZ3 found that having good knowledge led to a feeling of an increase of power and control within the home setting. This is obviously not the situation at present with the carers interviewed for this study,

Nobody seemed to know anything.. . You feel so powerless (Dawn).

ROLE CHANGE

When someone suffers a stroke it has an incredible impact on both the life of the person who has had the stroke and the carer. In many such cases changes of role have been observed, and these role changes are even more apparent when the person who has had the stroke is no longer able to communicate effe~tively.~~ Martyn13 identified three stages in the ‘carer’s career’ and associated different stresses and coping mechanisms with each stage. It could also be argued that there are different role that

0

0

0

changes associated with each stage too. The stages Martyn outlined are as follows:

Patient’s relative. At this stage the patient is in hospital, is seriously ill and the carer is visiting the patient. The main concern at this stage is whether or not the patient is going to survive; Novice carer. Once the patient comes home the carer takes on the role of ‘Novice Carer’ as he or she tries to cope with the situation and establish a routine; and Chronic carer. Once the carer has been coping at home for a while and has established routines they

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become accustomed to the role of carer and could be considered to be an established carer.

Patient ’s relative

It is at the stage when the patient is still in hospital, but the first few critical days are over, that the carer begins to realise the extent of what has happened, and begins to be aware of what the future may hold,

Obviously you realise you are going to learn to live a little bit different and you’ve got to, you have got to change you way of life, in every way, the normal act of life has changed, your social life has changed everything has changed (Leon).

The role changes at this stage are relatively minor, and few of the interviewees mentioned events that occurred in this stage of their career as a carer.

Novice carer

Practical changes of role are the ones that appear to occur most commonly at this stage in the carer’s career. These changes are due to the fact that the carer is having to take on responsibilities that were previously the domain of the person who has had the stroke, such as:

Household chores Susan always managed the household chores, everything, she was manager as it were, as far as I was concerned she dealt with it all household necessities, cleaning, shopping everything. She done all that (Leon). I have had to take on and learn considerably since Mervyn has been unable to do it, but like I’ve said, ‘It’s happened, you can’t make it unhappen, and you’ve got to carry on, Mervyn can’t do it so I have to do it’. I’ve never done anything. I never put the dust bag out, I’ve never put the milk bottles out, then suddenly I have to do it all

Managing the finances The other thing, I tell you, I found very frightening, when it came to looking after finances, we’ve got a joint account, which is fine, but he has got a couple of things that I can’t touch because it’s a deposit account, this sort of thing. Now I didn’t know anything about that, I didn’t realise (Sarah). The worst was money affairs. I have only just got all that sorted out. I’ve got an account and then power of attorney (Margaret);

(Peggy) ;

Form filling They are not easy questions. They are easy questions for someone who does them, but for somebody who doesn’t do them, and it depends upon the answers that you give these questions and how much you’re going to get. Susan always did all that, you see (Leon); and Cooking Q: I presume that there were quite a lot of things that you had to learn, that you hadn’t been used to doing? A: Oh yes, cooking, cleaning. I had to turn my lifestyle upside down to become a housewife. I think they call them house husbands now (Nick).

All of the interviewees could be considered to be established carers, so taking on these extra responsibilities was something that they learnt to do in the first few months after their partner had had their stroke. They learn how to adapt to these new responsibilities and cope with carrying them out.

Chronic carer

The role changes seen in the chronic carers appear to be mainly in the area of social role. Herrmann and W a l l e ~ c h ~ ~ identified three main areas of social change, which were :

0 Restrictions in recreational activities; 0 Alterations of social relations with friends; and

Social isolation.

Four of the carers interviewed mentioned that their recreational activities had been restricted,

Q: Were there some things that you felt you had to give up? A: Yes. Pleasures. My own pleasures. I gave up working with the volunteers in the Nearly New Shop. Then I used to go to a thing called Circle in the mornings, there would be lectures; I had to give that up. I used to be a member of the Luncheon Club, I gave that up. I have given everything up except what was important. But what was important; just going shopping really and seeing to his needs (Margaret).

Three of the carers interviewed mentioned that there had been changes to their social relations with friends,

You tend to lose contact with friends, mainly because you are too busy at the wrong times (Nick).

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Two of the carers interviewed appeared to have some social isolation,

I have no life of my own. Everything we do, we do together. I don’t really get any time off. I’m with him all the time and my life is subjected to his. We do what he wants to do (Dorothy).

When someone has had a stroke which affects communicative ability, this inevitably leads to a change in the nature of the interactions between the patient and the carerz5 and hence a change in social role. With this social role change the carers needs appear to become subordinated to the needs of their partner, as shown by the quote from Dorothy above. This subordination leads to isolation and this in turn can lead to mutual dependency.” Once the patient and carer have become mutually dependent the carer begins to be institutionalized into the carers role, and the decisions made are affected by this institutionalization. One of the carers interviewed in this study (Nick) appeared to be unwilling to try anything new that he had been offered. His wife had a stroke 12 years ago and he has cared for her at home since she was discharged from hospital. During the interview he said,

There are I suppose, in some cases, respite care, but the wife doesn’t seem to be interested in going to day centres or respite care (Nick).

Nick and his wife appeared to be mutually dependent spending all day together every day, apart from some rare exceptions,

I think the longest break I’ve had is about 6-7 hours when the nurses or friends have taken the wife shopping. That’s about the longest break I have had (Nick).

It does appear that Nick and his wife have become institutionalized into the patient/carer roles and are unwilling to change this. This may be associated with the length of time that Nick has been caring for his wife as other interviewees, who had not been caring for such a long time did not appear to demonstrate institutionali- zati on.

TRAINING

The Social Work Services Development Group“ identified training as one area that could be considered to be a carers ‘right’, i.e. something that they may

reasonably expect. Carers themselves have also identified training as something that they felt they needed” and even specified the areas that they felt they required training in. These were:

0 Training in basic nursing care; 0 Training in dealing with incontinence; 0 Training in lifting and handling techniques; and 0 Training in coping with the carer’s role.

Only one of the carers interviewed felt that he had sufficient training in how to handle his wife before she was discharged from hospital. He received this training via two mechanisms. The first was being invited to come and observe the ward staff caring for his wife,

Before Jenny came home, the Occupational Therapist and the Sister, said come down any number of mornings you like and watch and see how we get Jenny up in the morning. They also said come down in the evening and we’ll show you how we get Jenny ready for bed and undressed (John).

Secondly he was given a ‘trial run ’ when he had his wife home for a few days so that he was able to get an idea of what difficulties might arise and how he might deal with these,

We brought Jenny home on New Years Eve and she stayed New Years Day and the following day and we took her back in the evening so we had some idea what we were letting ourselves in for (John).

However, John’s case appears to be an exception. In all other eight cases the carers felt that there had been difficulties in some or all of the following areas:

1. No help

Five carers felt that either they did not have help to cope with the practical side of caring, or that they were not ready to take on these responsibilities,

It would have been handy, obviously, if I had a nurse there to help me to get myself organised, it was a quite dramatic change to both of our lives, not just Susan’s but both of us, and having to care for her rather than just coming in treating her as my wife, it’s quite a dramatic change, so if you had someone into help you along, to put you on the track, would have been a good idea, but you don’t get that.. . (Leon). You’re not born to this, you don’t know what to

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do and you have had absolutely no training at all because I was a truck driver down a quarry, that didn’t really qualify me for anything at all. Previous to that I’ve been a bricklayer and 3 years in the forces, didn’t adapt me for anything either, so no, no I was completely unready for it (Nick).

2. Lack of explanation

Three of the carers felt that some things had not been explained to them in enough detail. In one case, that of Sarah, she found it difficult to ask for fuller explanations about coping with her husband as everyone seemed to be so friendly she did not want to appear awkward or ungrateful for the care they had shown towards her husband when he was in hospital,

I would have liked it to have been explained to me a little bit more, but they were so nice and friendly that it just went like a wave (Sarah). I would have liked somebody to have talked to me matter of factly saying, ‘You know we did this, that or the other, if you want something different, you carry on’ (Alma).

3. Learning on the job

Four carers felt that they had to learn what to do as they went along either by trial and error or by watching someone else carry out the same task in the home,

We had somebody coming in the mornings to wash him, and I took lessons in what to do

I’m still finding it very difficult, it’s not an easy job to take over, I mean it’s like going back to school and all these things really (Leon).

(Peggy).

The fact that Leon states that he still finds some areas of caring difficult even 2 years after his wife had her stroke indicates that if he had had some basic training when his wife initially came home he may not be finding it difficult at this stage.

4 . Uncertainty

do in the initial stages, Two carers stated that they had felt unsure of what to

I had somebody come to see to Mervyn, to wash him and get into bed, because of course I had no idea what to do (Peggy).

One of these carers coped well with this uncertainty and soon became adept at dealing with her husband’s needs,

I’ve never had any experience like this before but it seemed to fall more or less naturally to me (Peggy ).

The other carer was still finding it difficult to cope,

I’m still finding it very difficult, it’s not an easy job to take over (Leon).

The evidence from the interviews suggests that there is a lack of training of carers. This lack of training may lead to carers experiencing fatigue if they are lifting and handling their partner incorrectly or if they feel they have to provide all the physical care for their partner,

I have to do everything myself, everything, I get so very tired (Margaret).

Novak and Guest2’ found that fatigue, or ‘physical burden’ as they called it, could lead to ‘emotional burden’ where the carer feels negative feelings towards their partner. Negative feelings such as these were not expressed in any of the interviews carried out for this study, but this may not be surprising as Martyn13 found that carers suppressed their emotions as a mechanism for coping with the caring role.

Despite the above mentioned difficulties, the carers did not seem to readily ask for help. This may be due to factors such as those outlined by CollyerZ8 who felt that this reluctance to seek help, particularly by elderly carers, may be due to:

Lack of understanding of the system; The mentality of a pre-welfare state generation;

0 Feeling that they had to be seen to be coping if they and

were to keep their partner at home.

Professionals involved with carers obviously consider training to be important for carers as they often include elements of training in courses run for carer^.^**^^ However, if carers are unlikely to ask for training, then providing training as part of a course will not reach the majority of carers. None of the people interviewed for this study had received formal training, had enquired about training or been invited to participate in a course.

DAY AND RESPITE CARE

The white paper ‘ Caring for People’‘ stated that one of its key objectives was to promote the development of

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domiciliary, day and respite services to enable people to live in their own homes wherever feasible and sensible. The interviews showed, however, that the carers had needs that were not being met by the day and respite services that they were being offered. They expressed three main types of need, which were:

0 The need to have time off to themselves; 0 The need to have a break from each other; and 0 The need to have respite back-up in case of illness

or emergency.

The need to have time ofs to themselves

All nine of the carers interviewed mentioned the need to have time off to themselves. This was even true for John who has two grown-up children living at home and who receives good support from his children. Caring for someone who has had a stroke can be a very time consuming job,

Q: So other than a couple of hours here or there, since Terry came out of hospital, you’ve basically been with him, caring for him? A: 24 hours a day, yes. Q: 7 days a week, without any real time off? A: Absolutely (Sarah).

Sometimes carers can go for years with only a few small breaks,

I think the longest break I’ve had in 12 years is about 6 7 hours when the nurses or friends have taken the wife shopping. That’s about the longest break I have had (Nick).

Carers have the desire to have time to themselves, but feel that this is an impossibility,

I would just like more time to be free (John). You need that time to yourself and you don’t get it (Dorothy).

As they do not have any free time they feel that they are unable to relax,

I seemed to spend my life rushing (Margaret).

The need to have a break from each other

Carers see having a break from the person they are caring for as important for both of them. They feel it is

important for their partner to interact with other people, but they also know that it is necessary for them to have some space too,

(Talking about a local stroke club) You could have taken Norman to this and walked away and left him, even if it be only for an hour, you would have had an hour on your own. It may sound cruel but I think it would have done him good, to be with other people, and an hour even, if I had even just been walking round the village on my own would have done me good (Dorothy). (Talking about the day care centre) It’s a break for both of us. I feel that Mervyn needs to get out of the house and to get away from me (Peggy).

The need for enhanced social opportunities and greater independence is an area that was identified as a positive benefit of day care by the Gloucestershire Carers Project (1996), following discussions with carers.

The need to have respite back-up in case of illness or emergency

Carers appear to feel that they do not have any other choice but to carry on even when they are themselves ill,

Q: Presumably during the 12 years, there have been times when you have been ill, what happened at those times? A: You just had to drag yourself out of bed. I’ve been fortunate, I’ve had no major illness but I’ve definitely had back trouble, shoulders, but you can ignore most of that. You have got to, you can’t afford to sit down and be ill (Nick).

One carer expressed her fear of what would happen to her husband if she were suddenly taken ill,

I’ll tell you the thing that frightens me most, I had a really bad tummy ache the other day and I thought ‘what happens if I’ve got appendicitis, and I am rushed in, who will look after Terry’. That sort of thing really is quite frightening, if you stop to think about it (Sarah).

However, another carer had been in hospital with pneumonia and her husband had also been taken into hospital, so she knew what would happen if the situation were to arise again,

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1 had to go into hospital, twice, and I said I wasn’t going in unless Mervyn could go in. I would not leave Mervyn here, so Dr Barry rang and said, ‘yes they will take him in hospital’. So we were in hospital together at the same time (Peggy).

It has been shown that respite care decreases carer’s stress levels3’ and that. carers need time to rest and a shift from their daily routines in order to cope.31 Some innovative forms of respite care are available in some health trusts, such as the day hospital that provides a night service for carers whose sleep is disturbed, to allow them to get good sleep for one or two nights a week.32 The fact that these types of provision are reported show that they are not particularly widespread. Some day care and respite services are available, but carers do not tend to request them. Out of the nine carers interviewed only two had requested day care and one requested respite care. This reluctance to ask for day care places and respite care may be to try to avoid admitting that they are not coping as well as people think, or it may be that they would feel guilty requesting such care,

There are I suppose, in some cases, respite care, but the wife doesn’t seem to be interested in going to day centres or respite care, so it’s got to be her idea to go, not mine. If I forced her to go, I would be on a guilt trip for the rest of the day, so it wouldn’t help (Nick).

Ultimately, the partners of those who are unable to cope will be admitted to hospital and possibly placed in long term residential accommodation. Sanford33 found that 12 % of all geriatric admissions studied by him were due to the fact that the carer was no longer able to cope with the patient at home.

POSSIBLE SOLUTIONS

Previous research into the area of community care has shown that carers have clear views on what needs to change. H e n ~ o o d ~ ~ found that this was the case when she showed that carers wanted genuine involvement and empowerment as well as changes to actual services. They wanted to ensure that they got the help and support that they wanted, rather than that which the professionals believe they need.

During the interviews undertaken for this project, five of the carers put forward a variety of possible solutions to the difficulties that they had experienced. These possible solutions are as follows.

Access to someone in an advisory role

Leon felt that he had to deal with lots of issues on his own when his wife was discharged from hospital. He felt that he would have benefited from having someone impartial who was able to advise him,

I feel that somebody whose in the situation as I am and so many others, there should be somebody who comes along and advises you on all these things, because like we just said, it is a big problem, and to have to face it alone (Leon).

Regular reassessments

Two of the carers interviewed stated that they felt that the person that they were caring for had been forgotten or written off,

But I feel, you know, as if he’s been written off completely. I mean I know there isn’t much money and it’s got to go to people who are going to get better, and I do admit that, but I don’t think anybody should feel they have been written off (Dawn). He was put in a ward with people who were almost written off if you like (Alma).

Leon felt that regular reassessments may prevent the carer feeling that they had been left on their own to deal with any problems that may arise,

They should assess her, possibly every 6 months after that, so that you are not forgotten (Leon).

Involvement with carers groups

Nick was the only carer interviewed who had any involvement with carers groups and he felt that this was an ideal place to gain information and raise awareness of entitlements,

(Talking about a local carers group) It’s ideal yes, it’s somewhere you can exchange ideas, we do get information from guest speakers, you yourself know that, you’ve turned up for a small group, and you get help through information coming from speakers and such like. I think more people are aware of what they are entitled to or what they can have (Nick).

Research appears to back up Nick’s view, as carers groups have been shown to increase knowledge of

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community resources,35 increase well-being, reduce anxiety36 and lead to carers feeling relief at being able to share their concerns.37

Access to somebody to caN on in emergencies

As shown in the ‘respite care’ section of this report, some carers feel very concerned about what may happen if they are ill or unable to care,

I’ll tell you the thing that frightens me most,I had a really bad tummy ache the other day and I thought ‘what happens if I’ve got appendicitis, and I am rushed in, who will look after Terry’. That sort of thing really is quite frightening, if you stop to think about it (Sarah).

Leon felt that a solution to this difficulty would be to have someone who was on call in emergencies for peace of mind,

There should be someone on call (Leon).

Access to support services for carers

Carers feel very much on their own in their caring role, and do not feel that they have adequate back up or support either from their friends, family or the service providers. Two carers specifically stated that they felt that they would benefit from access to support services,

The support of somebody else would have been nice. If it came from somebody else, it would have been helpful (Dorothy). Probably back-up for a carer might be a good thing, it really might. Just to check and make sure they are healthy because I know I lost a lot of weight, obviously I didn’t sleep very well, I didn’t know how to cook for a start (Nick).

Martyn13 found that carers had a need for counselling, which could be considered to be one such support service.

Provision of co-ordinated information

The amount and type of information received was shown to vary between carers. Often carers would get different types of information from a variety of different sources at different times. One carer felt that the

information would be more use if it was provided in a more complete co-ordinated form,

The doctors or district nurses, they should have some sort of leaflet where to go to get information. If someone came to you with this leaflet and said there’s a load of information in there that might be useful, study it at your leisure, instead of bom- barding you with twenty different leaflets which are here, there and everywhere, which never amount to much anyway (Nick). A co-ordinated book of some kind that listed the information needed, would be the only answer (Nick).

There are difficulties with providing co-ordinated information for different services as there are barriers to the co-ordination of community care between the health services and social services. Wistow and Hardy3’ described these barriers as :

0 Structural barriers; 0 Procedural barriers ; 0 Financial barriers; and 0 Status and legitimacy barriers.

The carers interviewed in this study seemed quite clear about the solutions that they felt they needed. It is only by listening to carers descriptions of their needs and possible solutions that appropriate service provision can be planned.

Conclusions and recommendations

The findings of this study show that carers who are caring for aphasic partners have clear ideas about what difficulties they have experienced and how these difficulties may be avoided. It has been shown in previous studies that carers are well aware of the problem areas in their own situation, and are able to determine which problems they are able to cope with easily and which problems they need help

The contribution that carers make to community care has been acknowledged in various official government documents which recommend that service providers give the issue of practical support for carers high priority. In order to prove effective support services for carers these services must be needs-led, based on the expressed needs of the carers. These needs have been discussed at length above and it is these needs that the service providers must address. It has been the failure in the past to

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adequately conceptualise the needs of carers that has led to interventions offered being largely inappropriate, irrelevant or unavailable” and, therefore, not cost effective.

At present there is no specific service for carers and studies have shown that community health workers spend less than 2 % of their time giving advice to carers” as they fail to see work with carers as a legitimate professional ro1e.16 In order to ensure that carers receive the services they require it may be of benefit to set up a service that focuses specifically on the carer and not on the carer as a part of the person they are caring for.

This service would have the care of the carer as their priority and would be able to provide adequate support, information, respite care, day care and training as well as helping carers to come to terms with their new role as a carer. They would be able to act in an advisory role, arrange regular reassessments of the person the carer is looking after, provide co-ordinated information about support services, provide an emergency cover service and arrange involvement with local groups. This service would then have addressed all the carers needs detailed above as well as taking on board their own solutions. A service such as this would need to be piloted in order to ensure that the services they were providing were the services that the carers really wanted and that provision of such services helped to reduce carer stress and burden.

Further studies may need to be carried out looking at carers needs in relation to their age, and their needs in relation to the diagnosis of the person they are caring for in order to determine whether carers of different ages who care for different client groups have similar needs to those expressed by the carers interviewed in this study.

References

1 Rossiter C, Wicks M. The future of family care. Community Care, 1982; 23/9/82: 19.

2 Green H. Informal Carers. London: OPCS Social Survey Division, 1988.

3 Jones DA, Victor CR, Vetter NJ. Carers of the elderly in the community. Journal of the Royal College of the General Prac- titioners, 1983; 33: 707-710.

4 Sadler C. Driven to Depression. Nursing Times, 1989; 85:

5 Griffiths R. Community Care - An Agenda for Action. A Report to the Secretary of Stare for the Social Services. London: HMSO, 1988.

6 Department of Health. Caring for People: Communiry Care in the Next Decade and Beyond. London: HMSO, 1989.

7 Department of Health and Social Security. Growing Older. London: HMSO, 1981.

8 Department of Health. Caring for People: Implementation Docu- ments. London: HMSO. 1991.

9 Goodman, C. Research on the informal carer: A selected literature review. Journal of Advanced Nursing, 1986; 11 : 7 0 5 7 12.

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10 Henwood M, Wistow G. The waiting game. Community Care, 1995; 2/2/95: 25-27.

1 1 Nolan MR, Grant G. Addressing the needs of informal carers: A neglected area of nursing practice. Journal of Advanced Nursing, 1989; 14: 950-961.

12 Robinson KM. Support Systems. Nursing Times, 1988; 84: 3&31.

13 Martyn P. Carers: Do They Need to Talk? Diploma in Counselling (unpublished).

14 Nolan MR, Grant G, Ellis NC. Stress is in the eye of the beholder: Reconceptualising the measurement of carer burden. Journal of Advanced Nursing, 1990; 15: 544555.

15 Dunnel K, Dobbs J. Nurses Working in the Community. London: OPCS Social Survey Division, 1982.

16 Association of Carers. Response to the Review of Communiry Nursing. Rochester: Association of Carers, 1985.

17 MacKenzie C, Le May M, Lendrem W, McGuirk E, Marshall J, Rossiter D. A survey of aphasia services in the United Kingdom. European Journal of Disorders of Communicarion, 1993; 28: 4 3 4 I .

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19 Colerick EJ, George LK. Predictors of institutionalization among caregivers of patients with Alzheimer’s disease. Journal of the American Geriatric Society, 1986; 34: 493498.

20 Jones DA, Vetter NJ. Formal and informal support received by carers of elderly dependants. British Medical Journal, 1985; 291 : 647445.

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Gloucestershire Carers Project. 1995-1996 Annual Report. (unpublished). Antonsen MG, Robertson CM. A Study of consumer defined need amenable to community nursing intervention. Journal of Advanced Nursing, 1993; 18: 1617-1625. Kautzmann AN. Linking patient and family stories to caregivers; use of clinical reasoning. American Journal of Occupational Therapy,

Herrmann M, Wallesch CW. Psychosocial changes and psychosocial adjustment with chronic and severe non-fluent aphasia. Aphasiology, 1989; 3, 513-526. Wahrborg P, Borenstein P. The aphasic person and his/her family: what about the future? Aphasiology, 1990; 4: 371-378. Social Work Services Development Group Project. Supporting rhe Informal Carers - Fifry Styles of Caring. London: DHSS, 1984. Novak M, Guest C. Application of a multidimensional caregiver burden inventory. The Gerontologist, 1989; 29: 79&803. Collyer M. Some people can never retire. Community Care 1988;

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- - 12/5/88: 22-23. Sharp T, Scurfield M. All in a day’s work. Nursing Times 1991,87: 2 4 2 7 . MacKay B, North N, Murray-Sykes K. The effects on carers of hospital admission of the elderly. Nursing Times 1983; 83: 4 2 4 3 . Oranen M, Sihvonen R, Aysto S, Hagfors C. Different coping strategies in families of aphasic people. Aphasiology 1987; 1 : 277-281. Phair L. Carer support: its up to us. Nursing Standard 1992; 6 : 51. Sanford J d . Tolerance of debility in elderly dependants by supporters at home: its significance for hospital practice. British Medical Journal, 1975; 3: 471473. Henwood M. Measure for measure. Community Care, 1995; 6/7/95:

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determining the needs of spouses caring for aphasic partners

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