`seeking': a key activity for new family carers of stroke survivors

`Seeking': a key activity for new family carers of stroke survivors

LLOUISEOUISE BBRERETONRERETON MEd, DIPN, RNT, RGN

Lecturer in Nursing, School of Nursing and Midwifery, University of Shef®eld, Shef®eld, UK

MMIKEIKE NNOLANOLAN BEd, MA, MSc, PhD, RN

Professor of Gerontological nursing, School of Nursing and Midwifery, University of Shef®eld,

Shef®eld, UK

Accepted for publication 26 June 2001

Summary

· Stroke is one of the major causes of disability in the United Kingdom and

considerable numbers of stroke survivors need help and support from family

carers.

· The sudden and unexpected nature of stroke means that there is very little

time for family members to prepare for a caring role.

· This paper draws on data from 37 interviews with 14 new carers of stroke

survivors and highlights the uncertainty and lack of con®dence that family

members experience in adopting a caring role.

· During the initial period following the stroke carers engage in a number of

different `seeking' activities in order to try and ensure that they feel competent,

con®dent and safe to provide care and that they understand the likely future

demands they may face.

· Rather than being facilitated by staff, carers' efforts often go unnoticed or are

overlooked, resulting in carers feeling that they are `going it alone'.

· Staff need to be more aware of carers' `seeking' behaviour and actively

encourage the formation of partnerships with family members.

Keywords: family carers, partnership, professionals, stroke.

Introduction

Throughout Europe family carers provide about 80% of

the help needed to maintain frail older people within their

own homes (Walker, 1995) and developing service systems

better to support family carers is therefore a common

welfare objective (Jani & Ie Bris, 1993; Davies, 1995). In

the United Kingdom (UK) family carers providing or

intending to provide `regular and substantial care' have a

statutory right to an assessment of their needs, as de®ned

in law by the Carers (Recognition and Services) Act

(Department of Health/Social Services Inspectorate,

1996). Although the primary responsibility for assessing

and responding to carers' needs lies with local authorities

the Carers National Strategy (Department of Health,

2000) charges all those involved in the health and welfare

services with paying closer attention to the situation and

circumstances of family carers in order that they are

enabled to care (if this is what they choose to do) without

Correspondence: L. Brereton, School of Nursing and Midwifery,University of Shef®eld, Humphry Davy House, Golden Smithies Lane,Manvers, Rotherham S63 7ER, UK (tel.: 0114 222 9904, e-mail:l.brereton@shef®eld.ac.uk).

Journal of Clinical Nursing 2002; 11: 22±31

22 Ó 2002 Blackwell Science Ltd

detriment to their health and inclusion in society. In

particular, the strategy highlights the importance of

providing support at key transition points, especially

entry to, or exit from, a caring role. However, despite the

greater recognition now given to carers' needs, several

recent studies in the UK have indicated that these remain

poorly addressed (Banks, 1999; Henwood, 1998; Warner &

Wexler, 1998) and that many professionals still do not

`think carer' (Woods & Watson, 2000). This is due, in

part, to the lack of an explicit service model and the failure

adequately to conceptualize the intended goals of carer

support (Twigg & Atkin, 1994; Askham, 1998).

In order to advance current practice a number of

authors have promoted the bene®ts of understanding

family care as a temporal experience in which needs and

service responses change over time (Anehensel et al.,

1995; Nolan et al., 1996; Askham, 1998). Consequently

the broad aim of support services (Askham, 1998) is to

assist family carers to:

· take up, or decide not to take up, a caring role;

· continue in a caring role; or

· give up a caring role.

Adopting such a perspective highlights the importance

of professionals creating a partnership with family carers

(Askham, 1998; Kirk & Glendinning, 1998; Kellet &

Mannion, 1999) so as to provide support that is consistent

with their needs at speci®c points in a caring `career'

(Anehensel et al., 1995; Nolan et al., 1996). It is widely

recognized that such a partnership needs to be forged as

early as possible and therefore it is essential for profes-

sionals to understand the ways in which family carers

`acquire' (Anehensel et al., 1995) or `take on' (Nolan et al.,

1996) their role, as family members who feel `prepared' to

care do so more effectively and experience lower levels of

stress and greater satisfaction in their role (Anehensel

et al., 1995; Archbold et al., 1995; Nolan et al., 1996).

While there are a number of elegant longitudinal models

of the needs of carers who adopt their role gradually,

especially in the case of dementia (Anehensel et al., 1995;

Nolan et al., 1996; Keady, 1999), few studies have

explored the experience of carers who take on their role

suddenly (Nolan et al., 1996; Brereton, 1997; Brereton &

Nolan, 2000).

Although some recent studies have focused on the

varying contributions that family carers can make to

support professional care provision in hospital (Bowman

et al., 1998; Li et al., 2000), it still seems that carers' own

needs at such times remain poorly understood (Brown &

Mulley, 1997; Henwood, 1998; Brereton & Nolan, 2000).

This paper describes a study exploring the experience of

`new' carers (de®ned as those taking on the role for the

®rst time) of the survivors of stroke. It begins with a brief

consideration of the relevant literature before presenting

the results of a series of 37 interviews conducted with 14

family carers.

Using a grounded theory approach, `seeking' is identi-

®ed as a core category underpinning carers' various

activities in the transition from hospital to home (or

nursing home) and to their caring role. The implications of

`seeking' for carer±professional interactions are considered.

Stroke: towards an understanding of the needs

of new carers

Stroke is a major cause of disability in the UK and because

of its unexpected nature, it usually precipitates unanti-

cipated caring relationships (Wolfe et al., 1996). In view of

this, Brereton (1997) suggested that stroke can be

considered as a `paradigm' case, serving as an exemplar

of the tensions and dilemmas that are faced by family

members `new' to a caring role. Indeed several studies

have stressed the importance of working with family carers

of stroke survivors to consider a range of physical,

psychological and emotional needs (McLean et al., 1991;

Rosenthal et al., 1993; Evans et al., 1994; King et al.,

1995) but have all concluded that such needs are rarely

adequately addressed. The results of these studies are

consistent with the wider literature on the situation of new

carers which con®rms that:

· carers rarely exercize a fully informed choice about

whether to care or not (Taraborrelli, 1993; Opie, 1994;

Henwood, 1998; Banks, 1999);

· carers receive little structured preparation for the caring

role (Braithwaite, 1990; Stewart et al., 1993; Harvath

et al., 1994; Howe & Scho®eld, 1996; Henwood, 1998;

Warner & Wexler, 1998; Banks, 1999); and

· carers' ability to care is often not assessed (Beach, 1993;

Jivanjee, 1994; Howe & Scho®eld, 1996) and conse-

quently skills are developed largely by trial and error

(Stewart et al., 1993) or `passive' learning (Harvath

et al., 1994).

Several recent large-scale studies in the UK have

highlighted that carers often experience dif®culties in

obtaining even basic information prior to hospital dis-

charge (Warner & Wexler, 1998; Banks, 1999), with the

result that they have little understanding of:

· what it means to be a carer;

· what help is available; or

· the nature of the illness/condition that their relative

suffers from.

With these issues in mind retrospective data were

collected from seven experienced family carers of stroke

Improving the quality of care Family carers of stroke survivors 23

Ó 2002 Blackwell Science Ltd, Journal of Clinical Nursing, 11, 22±31

survivors using in-depth interviews, asking them to

describe the manner in which they adopted a caring role

(Brereton & Nolan, 2000). Four key categories emerged

from these data:

· `What's it all about?': describing the uncertainty and

confusion carers experienced following the stroke and

their often frantic search for information that would

help them to better understand what had happened.

· `Going it alone': highlighting the sense of isolation that

carers felt and the relative lack of support they received

from staff in their search for information, skills and

support.

· Ùp to the job': focusing on carers' overriding desire to

feel con®dent to provide the care that was needed in a

safe way and how they sought to develop the skills and

competencies they required.

· `What about me?': encapsulating carers' feelings that

their own needs were overshadowed by those of the

stroke survivor and that their èxpert' knowledge of

their relative was often overlooked by professionals.

This paper draws upon considerable volumes of new

empirical data and further explores the above categories,

providing a more complete description of their properties

and relationships.

Method

The overall aim of the longitudinal study, of which these

data comprise a part, is to gain a better appreciation of the

needs of new carers of stroke survivors and to consider

how these needs change as their role develops. Data were

collected using prospective serial in-depth, semistructured

interviews with the same informants every 2±3 months

over a period of up to 18 months. Informants were

purposively sampled from three areas: a general acute

medical admission ward; a specialist stroke unit; and the

community when stroke survivors did not enter hospital

(TIA clinic). Carers were eligible for inclusion in the study

if they were over 18 years of age, were new carers, spoke

English, and the stroke survivor consented to their

involvement in the study.

This paper draws on data from 37 interviews under-

taken with 14 carers recruited from two hospitals in the

north of England, one city hospital and one district general

hospital serving a more rural area. The sample included

six males and eight females whose ages ranged from 32 to

93 years of age. These family carers included 10 spouses,

three daughters and one son of the stroke survivors. Two

carers were themselves nurses and another carer had

suffered a stroke himself. All stroke survivors were

hospitalized, two died in hospital, four were admitted to

a nursing home, six had returned home and two were still

in hospital at the time of writing.

Interviews were based on an initial interview guide

which was informed by the themes emerging from the

initial seven interviews with experienced carers (Brereton

& Nolan, 2000). Informants were invited to describe, in

their own words, their needs relating to becoming a carer.

An initial analysis of the interview data was undertaken

immediately afterwards in order to inform subsequent

interviews. Data were then transcribed for more detailed

analysis with both the interview guide and the analysis

process evolving via constant comparison (Glaser &

Strauss, 1967; Charmaz, 2000). Having read the tran-

scripts, open codes were identi®ed before being grouped

into categories. Line-by-line analysis was then undertaken

to identify the properties and dimensions of each category.

To aid analysis and constant comparison, tables of relevant

data were developed for each category. Data from

subsequent interviews were analysed in the same way

and properties and dimensions added to the tables.

Through an ongoing process, memos and diagrams were

used to assist the development of axial codes that link

categories and sub-categories together. The results of the

ongoing analysis were checked with interviewees at

subsequent interviews, and they provided further infor-

mation to illuminate and challenge the emerging themes.

This process meant that the themes re¯ected their

changing needs as family carers, whilst also ensuring that

the emerging theory was concise and conceptually dense.

Results

The results of the above analyses con®rmed and elabor-

ated upon the original four categories (`What's it all

about?', `Going it alone', Ùp to the job' and `What about

me?') and identi®ed `seeking' as the basic social process

linking these themes. Seeking describes carers' efforts to

better understand their role and to begin to establish some

degree of `balance' within their new and often confusing

situation. The results presented here relate primarily to

carers' seeking activities during their relatives' hospital-

ization, up to the point of discharge. Differing forms of

seeking activity were identi®ed but ùp to the job' emerged

as the carers' primary concern, with the ultimate aim

being to provide `best care' for their relative. In order to

do this carers engaged in multiple forms of `seeking'

activity that served differing purposes.

The categories `Going it alone' and `What about me?'

primarily capture contextual and background factors that

are in¯uential in shaping and de®ning the experience of

new carers. `Going it alone' encapsulates the relative


24 L. Brereton and M. Nolan

feelings of isolation that carers experience that precipitated

a `seeking for partnership'. Carers soon recognized that

they did not have the knowledge and skills to care

effectively and so, in varying degrees, they sought

partnerships, both with other family members where

these were available and with professionals. However,

their efforts at initiating and sustaining partnerships often

went unrecognized, prompting the reaction `What about

me?'. This describes carers' needs to `seek recognition'

both of their own needs, as distinct to those of the stroke

survivor, and of the expert knowledge that they could

contribute to care. Once again carers' efforts in this regard

often went unheeded and they frequently did not receive

the recognition that they sought.

The above two categories provide the backcloth against

which the main drama unfolded in terms of carers' focus

on `What's it all about?' and `Up to the job'.

`̀WHAT'SWHAT'S ITIT ALLALL ABOUTABOUT?'?'

`What's it all about?' captures the sense of bewilderment

and uncertainty that the stroke precipitated in all carers,

even those with a nursing background. The main form of

`seeking' activity here concerned a search for knowledge

and understanding. This initial stage was therefore

dominated by carers' attempts to become `familiar' with

their situation.

In responding to their stroke some carers were able to

draw on their past life or work experience to provide some

insight, knowledge and understanding of the situation.

Knowing about stroke or somebody who had suffered a

stroke helped some informants to identify the cause of

their relative's illness and to better appreciate its possible

effects:

I knew inside myself what had happened and I said to

my partner, God dad's had a stroke.

I knew he'd had one [a stroke] because his top lip

kind of curled up and I said to him, you have had a

stroke haven't you?¼ I knew because my Nan's had

one. She had a slight one, then she had a massive

one¼ now she can't walk. My granddad helps her all

the time.

Other carers were familiar with the term stroke but did

not understand what this was:

Q: Did you know what a stroke was at the time?

R: No. It's only that I had heard people saying that so

and so had had one.

However, informants often did not have the bene®t of

any such past experience and insight:

I didn't know what it was. I didn't think it was a

stroke because I didn't know about them.

Many carers were initially overwhelmed by the

situation but some were `hospital experienced carers',

having visited other relatives in hospital previously.

These individuals could draw on their past experience in

accessing information and negotiating their role in care

within a hospital setting. Two carers were `professionally

experienced' having nursed stroke survivors in various

settings throughout their careers. However, these

informants found that their nursing experience was of

little value in helping them to deal with the uncertainty

of their personal situation. Indeed a nursing background

was sometimes a hindrance as professionals made

assumptions about their knowledge and understanding

of the situation:

There's not been any avoidance because I am a nurse

but you probably make assumptions that people

know things. Yes I am a nurse but this is my dad and

it's the ®rst time he's had a stroke¼ This is all brand

new and I need you to tell us when we are not doing

it right and when we can do more or whatever.

Therefore, despite some carers being able to frame their

situation in terms of their past experiences, all carers

invariably also sought new understanding and informa-

tion, often turning to professionals to try to ensure that

their needs for information, skills, professional guidance

and support were met.

The most pressing and immediate need was information

in order to develop an initial understanding of `what's it all

about?'. All carers sought information about their relat-

ive's condition and progress on an ongoing basis. How-

ever, this information was often not easy to access,

resulting in frustration for several carers. Eventually many

resorted to ®nding information for themselves by using

various forms of `seeking' activities. This included both

overt and covert activity, such as asking questions,

observing, listening and reading, with seeking often

involving opportunistic use of observation and question-

ing. For example, some carers resorted to `eavesdropping'

on staff and patient interactions or surreptitiously reading

care plans:

Some [nurses] are quite helpful and do come and tell

me about my dad and how he has been, others don't

talk to me at all¼ They know I have read the

[medical] notes, but I don't think I would have been

told anything if I hadn't. I ®nd out most things by

reading the notes about his condition. It would be

nice if the nurse could ®nd a couple of minutes just to

speak to me¼ instead of me having to ®nd the

information out for myself.

I would have preferred someone to have come and

told me and not have to ask¼ I'd say `He's very ill



isn't he', and they'd sort of nod and agree, but its a

case of reading thoughts in one way.

Nobody will tell you anything¼ I need to know

now¼ you listen and you can hear everything that's

going off¼ we read everything [if they leave her

notes by the bed].

These types of `seeking' activity contributed to carers'

feelings of `going it alone', a sentiment voiced by all

informants irrespective of their success in gaining infor-

mation. In the absence of information from professionals,

carers resorted to ìnformal networking'. They would

compare their situation to that of other families in a similar

situation and sought advice from professionals they knew

in a social capacity. Indeed carers felt that information

about the stroke survivor's progress, was often gained

ìn-spite of' rather than `because of' the help they received

from staff.

Those carers who were successful in their `seeking'

activities developed better insights into the stroke survi-

vor's abilities and care needs. However, a full understand-

ing of `what it's all about' proved elusive for all informants

because of the continued uncertainty surrounding stroke

and its effects, along with the constantly changing nature

of their situation resulting from their relative's progress.

As such carers were faced with making decisions about the

future care of the stroke survivor without an adequate

understanding of what this might entail. This exacerbated

their feelings that they might not be ùp to the job'.

`̀UPUP TOTO THETHE JOB'JOB'

Data from the current interviews reinforced the impres-

sions gained from the initial seven interviews that feeling

ùp to the job' (Brereton & Nolan, 2000) is the key to

understanding the initial experience of new carers.

However, the more detailed prospective and sequential

interviews permitted a fuller understanding of this phase.

The primary motivation for carers was to `seek best care',

referring to their desire to ensure that the stroke survivor

received care of the highest standard and that they were

competent to provide the help required. As a result carers

again engaged in numerous forms of `seeking' behaviour.

Immediately following the stroke `normal' family func-

tioning was disrupted and consequently carers had little

choice but to take on, at least temporarily, roles that their

relative would previously have performed. Depending on

the severity and effects of the stroke, such roles could be

short-lived or enduring. These additional roles were a

source of stress for some carers, who not only had to ful®l

their usual roles, but also visit the stroke survivor in

hospital and begin to adopt a more formal caring role:

My husband has always driven. I've not driven for

20 years¼ the transport thing was horrendous¼ so

I've eventually got to driving again¼ I'll be the one

making decisions now. I've never been happy making

decisions¼ I don't really like that.

I am a bit unsure about what to do in the house¼ I'm

not totally unself-suf®cient¼ I'm doing ironing and

washing in bits, not ef®ciently but within my

limitations.

The relative familiarity of such roles helped carers both

to recognize what was required and to gain control of the

situation at home. It was at this point that informants

often sought partnerships with other family members.

Some carers were particularly skilled at delegating tasks to

others to ensure that they could cope:

I have been sensible, I have got them [friends and

neighbours] doing things at the house¼ It's a big

help for me.

Although these additional roles were mentioned by

many carers, not surprisingly the major focus was on their

efforts to ensure that their relative received the best care

possible. Initially carers put their faith in professionals but

still sought to exert some in¯uence on the care given,

either by providing information about the stroke survivor

or by more overtly seeking to contribute to or direct their

care. Although carers did not want to criticize staff, almost

all the informants felt that the care that their relative

received was often beyond their control. Several carers

commented on how busy staff were and how this often

meant that patients were waiting for care, particularly

assistance to use toilet facilities. In an effort to ensure a

consistent quality of care informants resorted to `monit-

oring' staff and care activities. It was also at this point that

informants sought greater recognition of the expert

knowledge that they possessed about their relative and

began to ask `what about me?' However, informants

reported that staff frequently failed to take heed of the

information that they provided.

All carers had detailed knowledge of the person affected

by the stroke and their `normal' lives pre-stroke. Some

were able to provide information to help staff, particularly

if the stroke survivor had speech problems, although they

were uncertain as to whether this information was actively

used by staff to inform their relative's care:

I think you should ask the family what they were like.

I think the speech therapist did ± I had to ®ll out

quite a comprehensive form, if anybody takes any

notice of it or reads it.

Carers wanted the information they provided to in¯u-

ence their relative's care, but were sometimes frustrated

when it didn't:



My mum has never ever eaten potatoes, greens, eggs.

She never sits down to a hot meal. Now she is on a

diet that's got to be pureed and when we tell them

that mum has never eaten that type of food they say

well there is nothing else she can have, she's got to

have it. Now if my mother was a vegetarian or a

diabetic, they'd have to ®nd something for her¼ but

for me, I'm putting food in my mother's mouth that I

know she doesn't like¼ a lot of dignity goes.

Such `biographical' information also informed carers'

efforts to alert staff as to how to interpret the stroke

survivors' reactions to their situation:

If he's as sweet as he was when he ®rst came in, and

kind and polite, then he's ill, if he's nasty, he's

hungry, if he's argumentative, he's normal. If he's

looking for fault and complaining and grumbling¼it's just his normal carry on. If they'd just sort of ask

me, I could say well just take it with a pinch of salt

and help him if you can but that is his normal self, it

means he's okay.

If such information went unheeded by staff, those

carers with more con®dence or knowledge took an

increasingly active role in their relative's care. One carer,

who was herself a nurse, recounted the following:

One of the nurses had written `Very wet'¼ I

thought well it's the ®rst night, but then the next

night and the next¼ so I wrote them a note saying

`Why is he so incontinent? Do you think he ought

to stand and empty his bladder?'¼ Then they

started to do that. Then my dad said `They stuck

something on me last night'¼ so I went to ®nd out

what was going on and that has been very successful

but I feel that that wouldn't have happened if I

hadn't written little notes¼ `Why aren't you

managing it?'

Numerous informants, while not having the profes-

sional `know-how' displayed above, were also concerned

about the quality of care that their relative received and

sought greater continuity in this.

They [nurses] read what they have written in the

notes and it's a waste, just a waste. There's nothing in

there that tells them how to lift her ± it's just what

they have done in the day¼ there's nothing in there

that says support [wife's] knee anywhere.

The sister always brings the [agency] staff in and says

this is Mr X and he needs this sort of care¼ but

there have been times when they haven't followed the

instructions, so it's been a bit dicey.

This concern seemed to be heightened if carers were

taught skills but witnessed staff implementing care in a

different way:

That was the most wonderful thing one day when he

had the dental hygienist and she cleared his mouth

out and it was fantastic. She left instructions that his

mouth was to be cleaned with distilled water and

cotton swabs¼ then the next time I went all the

things she had left had gone and there were some

foam sticks and some Corsodyl and they said `Well

we're using this now'. So it worried me that she had

said de®nitely use this, showed me what to do and

here was something different that they [nurses] had

decided should be used. I didn't want to say anything

to them because I didn't want to criticise them but

these things kept falling on the ¯oor and I thought

they are using these in his mouth and they have been

on the ¯oor.

Such was the level of concern for some carers that they

felt the need to `monitor' the quality of the care given to

their relative. As a consequence they spent long periods of

time at the hospital, often compounding an already

stressful situation:

I just needed to know that people were going to look

after him when I wasn't there. I was so afraid to leave

him for a little while because [cries] the way he was

presented when I went back onto the ward ±

mismatching pyjamas and nothing on that was his,

lolling out of the chair.

I was getting more and more tired doing what work I

could do and going straight to the hospital and sitting

with her for as long as I could because I was

frightened that she wasn't getting her food right.

Given the above comments, it is not surprising that

all carers, regardless of their relative's discharge desti-

nation, wanted to be more involved in the care that

their relative received in hospital. Although initially

most respondents were unaware of their own potential

future role as a carer, over time they began to

understand that their relative would require help post-

discharge. Consequently, their desire to be involved in

their relative's care also re¯ected their need to feel

con®dent and competent in their caring role post-

discharge. Despite their best efforts, several informants

were thwarted in their desire to be more actively

involved and often felt as though they were `intruding'

on professional territory:

I wanted to be involved more [in my wife's care in

hospital] but they kept saying `No'. If they had

shown me how to do it without hurting her, I would

have done it. Like last night she wanted to go to the

loo and there was nobody to move her. I would have

done it. You're waiting because there's not enough

staff to take her and I could do it¼ I need to start



doing that now [because] it's me that's got to be ready

when [wife] comes home.

In the absence of a facilitative approach by staff several

informants nevertheless got involved in care delivery and

even those with nursing experience hoped that they were

doing the right thing:

It would have been nice for them to say `Look this is

all you can do right now' ± whatever. I have been

doing these things, thinking `I hope I am doing the

right thing really'. I was moving him and they

[nurses] saw that I was moving him too but nobody

came and said `Do you know what you are doing, has

anybody showed you how to move him?'

Following the immediate post-stroke period, carers

naturally wanted to be prepared to give care following

discharge. Thus `seeking skills' became an important

activity for informants but they usually had to take the

initiative, often describing how they had to overcome

apparent resistance on the part of staff:

I think they [staff] thought I was intruding, I felt as

though I was intruding as well because when we went

down to physio¼ I felt a bit of tension there too with

me wanting to go in there all the time.

I want to get just some idea of what I'm going to need

at home¼ I asked them yesterday¼ today they

[nurses] said, they'll [physio and occupational ther-

apist] let you know when they are ready. But I want

to be ready.

This desire to be `ready' for discharge again led carers

to ask `what about me?', as their own need to be involved

in care and to learn the skills they felt that they needed

often went unheeded or was sometimes actively thwarted:

I feel cross¼ that I am being shut out of his

treatment by them [physiotherapist and occupational

therapist]. They had meetings at the hospital where

they sat together and talked about all the patients.

You would think that they would say well this is

where we have got to and this is where you have to

go.

Why couldn't I come to this meeting today about

[wife]? They [multidisciplinary team] sat in and

talked about [wife]. It was an ideal opportunity for

me to be here and listen to her progress and what the

occupational therapist is going to do if she can't pick

a cup up, which she can't.

In such cases carers sought involvement and recognition

that they had something of value to offer.

I am now involved in every little breath that

[husband] takes and I can tell you the slight ups and

downs with every little thing ± if he's even slightly

breathless then I can tell because I know it. I am in

the same room as him most of the time. I really do

feel that I am as much involved in [husband's] care as

anybody. You feel a bit put out that you are not

allowed to be involved because they sort of whisk him

away into another room.

Carers also sought recognition for their own needs:

I can't say that anybody [staff] has come and said

`Why don't you go? We'll watch him' or `Do you

want to talk about what has happened?' That's not

happened at all and at the weekends when there

hasn't been much going on, there could have been

time for me.

As discharge approached informants became increas-

ingly concerned about their ability to provide the care

required. They sought con®dence and competence, yet

frequently had to learn the skills they needed by `trial and

error' post-discharge.

She's [physiotherapist] not taught me how to get him

out of bed and that sort of thing. She's been working

solely with him really¼ you just have to work it out

for yourself but I do think you need a bit of teaching

so you know what's right. You learn as you go on

though. It's trial and error really mostly.

Carers reported an increase in their con®dence when

they were taught skills by a professional in whom they felt

con®dent themselves. As such there seems to be a

reciprocal element to developing con®dence ± carers need

to have con®dence in the professional teaching them the

skills as well as feeling that staff have con®dence in them.

Carers' con®dence increased when they had a good

knowledge about stroke, the stroke survivor's problems,

and where and how to access help. They also needed to

feel satis®ed that their caregiving skills were likely to be

effective in meeting the stroke survivor's needs. Carers'

con®dence in their ability to care was reinforced by

feedback from staff and the stroke survivor as this af®rmed

their ability to cope with the demands of caring.

Unfortunately most carers reported that few opportunities

existed for them to work with staff and to receive feedback

about their skills and competence. Consequently, carers

did not feel well prepared for caring following the stroke

survivor's discharge home:

He actually came out sooner than I thought¼ I was

nowhere near ready. I didn't get any preparation [for

caring].

The lack of time afforded to carers to prepare them for

their relative's discharge created additional stress for

carers and undermined their con®dence about caring.

However, an important con®dence booster for carers was

feeling well supported by professionals throughout care-

giving post-discharge:



You need con®dence, you need back-up. It's about

them [professionals] sharing their knowledge with

you so that you feel con®dent to keep going.

Discussion

As highlighted earlier, conceptualizing family care from a

temporal perspective has focused attention on the import-

ance of providing help and support at key transition

points, especially entry to a caring role. This has been

reaf®rmed in recent policy statements in the UK

(Department of Health, 2000). Carers `seeking' activities,

as described in this paper, provide important insights into

what motivates new carers and the dif®culties they

experience in adjusting to the early stages of their new

role. The dynamic, reciprocal and subtle ways in which

seeking behaviour manifests itself is illustrated in Fig. 1.

In terms of being ùp to the job', the current data

suggest that family carers are primarily concerned with the

quality of care that their relative receives, which is

consistent with the ®ndings of others (Boland & Sims,

1996; Schumacher et al., 2000). Ensuring that their

relative receives the best care and becoming a `good'

family carer appears to be a complex process throughout

which carers strive to develop familiarity, control, con®d-

ence and competence in their role at a time characterized

by uncertainty and constant change (Grant, 1999).

Understanding `what's it all about?' is to some extent a

prerequisite to being ùp to the job' but this relies on

information being exchanged between professionals and

carers. Carers in this study clearly wanted their contribu-

tion to care to be valued by professionals and identi®ed the

need for an exchange of information between themselves

and professionals, a ®nding mirrored in other studies

(Harvath et al., 1994; Liaschenko & Fisher, 1999; Allen,

2000). Family carers have knowledge and understanding

of the care-recipient's interests, preferences and home

situation, referred to as `local' (Harvath et al., 1994) or

`person' (Liaschenko & Fisher, 1999) knowledge. Profes-

sionals have knowledge and understanding of pathophy-

siology and typical manifestation of disease processes,

referred to as `cosmopolitan' (Harvath et al., 1994) or

`case' (Liaschenko & Fisher, 1999) knowledge.

The bringing together of care and person knowledge

creates what Liaschenko & Fisher (1999) call `patient'

knowledge. This involves `knowing the patient' by

understanding their commitments, personal priorities

and emotions. Such an understanding of the individual

patient can only be achieved by the exchange of informa-

tion between staff, patients and relatives (Liaschenko &

Fisher, 1999). Similarly, Harvath et al. (1994) contend

that èxpert nursing practice is characterized by a blending

of scienti®c knowledge and an understanding of each

patient's unique situation'.

Figure 1 Seeking: dynamics and interactions.



Data from this study suggest that `person knowledge' is

often not actively sought nor necessarily used by profes-

sionals in caregiving. Indeed, there are examples of family

carers having the knowledge that professionals need to

care effectively for their patients, but professionals being

reticent to seek the advice of family carers. Equally, family

carers were reluctant to offer advice or guidance to

professionals for fear of being seen as ìnterfering', even

though they were eager to exert some in¯uence or control

over the situation. Therefore, data from this study suggest

that, despite carers being willing to engage in information

sharing, professionals were often reluctant collaborators.

This is again a ®nding reported by others (Bowman et al.,

1998, Allen, 2000).

To improve collaboration and reduce carers' seeking

activities, professionals need to take account of their life

experiences and existing level of knowledge when provi-

ding and obtaining information. This requires careful and

sensitive assessment (Henwood, 1998; Nolan & Philp,

1999). In the absence of suf®cient information carers may

lack con®dence in their knowledge and ability to be ùp to

the job'. Consequently, despite the majority of informants

in this study being willing to become carers, consistent

with other studies (Warner & Wexler, 1998, Grant, 1999;

Driscoll, 2000), they did not have a clear understanding of

their relative's needs or the likely demands they would

face post-discharge.

Although this limited attention to carers' needs may be

in part due to a perceived lack of time by staff (Hill &

Johnson, 1999), this is unlikely to provide a complete

explanation. Other factors include staff not `thinking

carer' (Wood & Watson, 2000) or seeing empowered carers

as a threat (Allen, 2000).

If practice in this area is to improve it is important to

develop partnership models of working with family carers

(Brown et al., 1997; Grant, 1999; Allen, 2000; Hertzberg &

Ekman, 2000; Li et al., 2000; Miller, 2000). This will not

only help to ensure that stroke survivors receive the `best

care' in hospital, but also that their carers feel well prepared

for their new role post-discharge. To do this effectively

professionals need to acknowledge and overcome the

barriers to the development of partnerships and collabor-

ative working. Crucially, professionals need to create an

environment conducive to greater family involvement.

Brown et al. (1997) contend that family carers' involve-

ment in patient care depends largely on the therapists'

attitudes towards family participation, with Laitinen &

Isola (1996) concluding that the characteristics of the

nurse, including friendliness, humanity, skills and

empathy, are key considerations. Ultimately carers need

staff to welcome their involvement in care and advise them

on how and when to become involved, so that they do not

feel that they are ìntruding on professional territory'

(Grant, 1999; Allen, 2000; Hertzberg & Ekman, 2000;

Miller, 2000). Herein lies one of the most signi®cant

challenges for the future.

Conclusion

Professionals and family carers share a common agenda,

with both seeking to provide the `best care' to stroke

survivors. Working in partnership offers the best way

forward. This will mean that staff need to be aware of, and

respond to, the various forms of `seeking' behaviour

described in this paper. This is essential as carers are more

likely to experience greater stress if they do not feel up to

the job. Professionals therefore need to take an active part

in preparing carers, and service providers must pay more

than `lip service' to this important aspect of their role if

stroke survivors are to get the `best care' possible.

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`seeking': a key activity for new family carers of stroke survivors

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