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Scandinavian Journal of Occupational Therapy.

2010; 17: 1828

ORIGINAL ARTICLE

Being a close relative of a person with aphasia

BIRGITTA SJÖQVIST NÄTTERLUND

Centre for Rehabilitation Research, University Hospital, Örebro, Sweden

Abstract
The aim was to investigate close relatives’ experiences of the influences of aphasia on their own life situation, as well as their
perceptions of everyday activity for the person with aphasia and support for the family in daily life. Fourteen close relatives
of people with aphasia were interviewed on one occasion each. The interview text was analysed using qualitative content
analysis, and sorted into three themes: ‘‘The influence of aphasia in the family’’, ‘‘Everyday life’’, and ‘‘The meaning of
support’’. The aspect most apparent from the interviews was the great changes in the interviewees’ lives after their relatives
had been stricken with aphasia, particularly the loss of friends. There were also communication problems in the beginning.
While many said that their aphasic relative always used to be active, only a few described the resumption of previous
activities. Having an aphasic family member in need of support created a sense of emotional loneliness, and of being the one
who does the majority of the practical chores. The results accentuate the importance of close relatives, and their essential
function for support and motivation. The close relatives must be given support from rehabilitation and community staff, to
make it easier for them to communicate with and cope with the aphasic person in everyday activities.

Key words: Aphasia, close relatives, everyday activities, interviews, qualitative content analysis, social support

Introduction who interviewed spouses of aphasic people, found


five areas of concern: support, information, role
The influence of a disability such as aphasia extends
change, training, and day/respite care. Earlier re-
beyond the person directly affected; it also repre-
search (1) has also shown that support in the form of
sents significant life changes for the family. The
specific communication training programmes for
effects of disabilities such as aphasia often lead to
both the aphasic person and his/her close relatives
limitations in activities, in communication, or in can improve their communication. The spouses
social life (15). interviewed by Denman (12) often experienced a
The non-aphasic relatives are generally supposed feeling of loneliness in their caring role; they had not
to become informal carers for the affected individual received sufficient practical or emotional support,
(6). The disability increases expectations of non- and they felt in need of someone to talk to and ask
aphasic relatives, and places new demands on them for advice in daily life.
(7,8). Wells (9) states that our knowledge concern- The provision of support is an essential task both
ing the meaning of the role change and the reality during rehabilitation and in the broader context of
that our life is lived in a societal context must be community integration (1416). The ways in which
taken into account. relatives handle problems pertaining to the disabled
There is still little research into the meaning of person depend partly on the relatives’ ability to cope
support and the lived experiences of support for (17,18) and to support their family member, and are
family members who act as carers (10,11). Walsh of great importance to health and well-being
and McGoldrick (4) have shown that it is important (19,20).
to support the family in finding new areas of activity Earlier research has shown that it is important for
so that they can make the best use of the aphasic relatives to obtain information on aphasia, and that
person’s participation in family life. Denman (12), they need support in daily life if they are to be able to

Correspondence: Birgitta Sjöqvist Nätterlund, PhD, Research Manager, Reg.OT, Centre for Rehabilitation Research, University Hospital, Örebro County
Council, 701 85 Örebro, Sweden. Tel: 46 19 6025885. Fax: 46 19 6025881. E-mail: birgitta.sjoqvist-natterlund@orebroll.se

(Received 11 April 2008; accepted 13 February 2009)


ISSN 1103-8128 print/ISSN 1651-2014 online # 2010 Informa UK Ltd. (Informa Healthcare, Taylor & Francis AS)
DOI: 10.3109/11038120902833218
Being a close relative of a person with aphasia 19

assist the aphasic person; however, the meaning of friend; in the latter case, the aphasic person said that
social support varies throughout the life cycle (13). they did not have any relatives but that this friend was
There are a number of diverse definitions of social as close to them as any relative could be. These 20
support, but in general it consists of the actions that close relatives were invited by telephone to partici-
others perform to assist a particular person. Social pate in the study. Six of them declined to participate,
support may have different functions. As early as and so the participants eventually comprised 14 close
1981, House (21) described three kinds of such relatives (seven women and seven men); seven
support: instrumental, informative, and emotional spouses/partners, four parents, one sibling, one child,
support. Instrumental support covers the activities or and one very close friend. Nine of them were
materials provided by other people that enable the employed, and five were retired. Participation was
performance of ordinary role responsibilities; infor- based on informed consent after potential partici-
mative support covers the communication of opinion pants received both oral and written information.
or fact relevant to current difficulties*including Approval for the research project was obtained
advice, guidance, personal feedback, and in- through the Regional Ethics Committee in Uppsala,
formation*that might make an individual’s life Sweden.
circumstances easier; and emotional support covers
assertions or demonstrations of love, caring, respect,
sympathy, and group belonging. The aphasic people in the earlier study
While there is a body of research on family The people (n 20) with aphasia in the earlier study
support (1,5,10,11,22,23), there is a lack of speci- (24) had been diagnosed with aphasia at a hospital.
fication of ways in which a non-aphasic relative may They were recruited from the Aphasia House*
be supported in helping a person with aphasia and in Centre for Communication Training (hereafter the
facilitating his or her participation in everyday Aphasia House), a specialized centre based in central
activities. Family carers have their own clear ideas Sweden. They had all participated in the outpatient
about the problems that they have experienced, and programme at the Aphasia House. The 14 aphasic
their own understanding of how these problems can people whose close relatives participated in the
be avoided (12). The anxiety of daily care and present study included five women and nine men,
support often falls on the non-aphasic relatives, aged between 28 and 70 years (mean 55.6 years).
and this group of relatives is therefore the focus of All interviews took place between two and 11 years
the present study. The aims of this study were to after the onset of aphasia. One woman had not
investigate these close relatives’ experiences of the wanted to participate in the earlier study, but was
influences of aphasia on their own life situation, and happy for her close relative to participate in the
their perceptions of everyday activity for the person present study. All (n 14) had worked before the
with aphasia and support for the family in daily life. onset of aphasia, and two (including the woman who
declined to participate in the earlier interviews) were
still working at the time of the interviews. Two men
Material and methods
had suffered a traumatic brain injury, while the
The study had a descriptive, qualitative design. The remaining 12 had suffered stroke. All had an ex-
aim was to gain understanding and knowledge of pressive aphasia.
experiences of everyday activities and support from
the perspective of a close relative. We therefore used
content analysis to examine the data gathered. Procedure
The interviews with the close relatives were per-
formed in conversational form, with each of the 14
Participants
close relatives, on one occasion per interviewee.
The study group comprised non-aphasic relatives Those who agreed to participate in the study were
and one very close friend (hereafter referred to telephoned by the author to set a time and place for
collectively as close relatives) of 20 people with the interview. Nine chose to be interviewed in their
aphasia who had participated in an earlier study own homes, while the remaining five close relatives
(24). We recruited the participants in the present preferred to be interviewed at the Centre for
study by asking the aphasic people in the earlier study Rehabilitation Research.
whether we could interview one of their close relatives The interviews were based on two opening ques-
about their life situation and the close relative’s tions in which the close relatives were asked to
experiences of the aphasic person’s everyday activity narrate their own experiences of everyday activities
and social support in daily life. We were given 20 and support: ‘‘Please tell me about your perceptions
names of close relatives and one name of a very close of your aphasic relative’s everyday activities and
20 B. Sjöqvist Nätterlund
Table I. Overview of identified themes and categories.
support in daily life’’, and ‘‘Please tell me about your
own experiences of the everyday situation and
support after the onset of aphasia in the family’’. Themes Categories
Follow-up questions were used to stimulate further The influence of Challenges and role changes
narration: ‘‘Can you tell me more?’’, ‘‘Can you aphasia in the family
explain what you mean?’’, and ‘‘How did you Anxiety*present and future
Changes in the family’s social
feel?’’ In asking these follow-up questions, the
network
interviewer attempted to keep the focus on everyday Emotions in daily life
activities and support. The interviews lasted be- Perceptions of their aphasic relative’s
tween 45 minutes and two hours, and were tape- feelings
recorded and then transcribed verbatim. Everyday life Managing daily routines
Past and present activities
Employment, or the lack thereof
Importance of training
Analysis
Communication within the family
The interview text was structured and analysed using The meaning of The acute phase*lack of or need for
support support
a qualitative content analysis inspired by Graneheim Giving support to their aphasic
& Lundman (25) and Krippendorff (26). The relatives
objective of content analysis is to provide knowledge
and understanding of the phenomena being studied
(27). The analytical procedure was supported by the
use of a software package designed for qualitative close relatives’ own experiences of everyday activ-
methodology, the Qualitative Solutions and Research ities and support. When all the meaning units had
(QSR), NVivo (version 2.0) (28,29). been condensed, coded, categorized, and sorted into
Each interview was checked against the tape to themes (Table II), the complete interviews were
make sure that it had been correctly transcribed, and reread to verify the findings.
to obtain an overall picture of the content in the
interview text. The content of the interviews rele-
vant to experiences of everyday activities and Results
experiences of support was then analysed, one
interview text at a time. The interview text was split The influence of aphasia in the family
into meaning units, where a meaning unit is defined Challenges and role changes. The interviews revealed
as a coherent expression of meaning comprising one that the onset of a disability such as aphasia brought
or more sentences (25). Similar meaning units were with it great changes, and comprised a significant life
grouped together, and the meaning units were change for the family. The most obvious factor to
condensed and labelled with codes. A code consists emerge from the interviews was the marked changes
of a short phrase expressing the essential meaning resulting from the aphasia, and the pressure and
(25). The numbers of codes were reduced in order demands that the illness placed on the close rela-
to ensure clear boundaries between them, and the tives. Another consequence was role changes within
codes were then classified into categories. A cate- the family; the close relatives had to take on most of
gory can be described as a grouping of content that the family responsibilities, which could be a source
shares the same meaning (26,30). Meaning units of irritation. The role change was more noticeable
and transformation were taken into account when when the aphasic person was no longer able to
the codes and categories were formulated. The communicate effectively. The close relatives, mostly
choice of words in the formulation of codes and wives, were forced to learn to live a new kind of life,
categories should characterize an abstracted and though some close relatives stated that life had
deeper level of understanding without losing the returned to the way it was before. They had fought
meaning of the interview text (26). The textual for everything to be as before, and felt that this had
content in the different categories was compared in strengthened their self-confidence.
order to identify similarities and differences, and the
categories were then formulated into three themes: Everyday life has gone back to the way it was
‘‘The influence of aphasia in the family’’, ‘‘Everyday before, that’s what I was striving toward * but
life’’, and ‘‘The meaning of support’’ (Table I). things are more time-consuming.
These themes illustrate the underlying meaning,
that is, the latent content of categories (25), and We have it pretty good . . . . Yes, life’s not a bed of
are intended to express the essential meaning in the roses, but it never is . . . for most people.
Being a close relative of a person with aphasia 21
Table II. Illustration of qualitative content analysis from a meaning unit stepwise into a theme.

Condensed
Meaning unit meaning unit Code Categories Theme

I do help, not with the laundry but . . . . I help She does laundry and Daily routines Managing Everyday
her with the cleaning. But nowadays it . . . cleans more today, but and chores daily routines life
so she’s doing a lot more on her own. And I her spouse helps
think that it’s probably for better or worse

Anxiety*present and future. At first, after the initial aphasic relatives in the beginning, and how this was
onset of aphasia, the close relatives worried about rare now they had lost most of their social contacts.
their aphasic spouses when they were alone at home; A small number stated that they had kept in contact
they worried that they would fall or that something with their old friends.
else would happen. One significant concern among
the close relatives was how the aphasic relative’s We play maybe once a month, along with another
children would react to their parent’s developing couple that bowls. We usually get together during
aphasia. The close relatives had to struggle a lot with the summer, Christmas or at mid-summer; we
themselves, and they worried about how life would usually spend New Year’s with some other friends
be in the future. Another anxiety described by the we still have . . . but it’s different, the conversa-
close relatives was that they did not believe that their tion’s not the same.
aphasic relative would be able to return to their
former work after being struck by aphasia, and there Their perception was that their aphasic relatives
was concern over what would happen if the healthy isolated themselves in the beginning, but had since
spouse became sick. They also worried about their opened up. They tried to push their aphasic relatives
aphasic relatives not having any activity to engage in into talking when they got together with acquain-
during the day while they were at work. Some close tances, but some experienced their aphasic relative
relatives described the aphasic person’s everyday being ‘‘passed over’’, with their friends instead
activities as being ‘‘not especially good or eventful’’, talking to the one who was not ill. Explaining or
and said that the aphasic person no longer wanted to talking about the aphasia to other people (friends
see them. They were anxious about this; one of them and colleagues) was sometimes experienced as not
explained it as ‘‘NN’s everyday life isn’t really that being very easy.
brilliant, I think. He doesn’t want to, he doesn’t
really want to have visits.’’ Mm . . . , then it’s different too, with people, how
Some were worried about their aphasic relatives they tackle things. For some people, well, it’s so
who did not want to see family and friends; one said: natural. NN met an old workmate and she came
‘‘NN always wants to be at home, and NN is and knocked on the door, she talked to him just
isolated . . . a lone wolf’’. They had, at the beginning,
like usual. Then we ran into someone else down-
great concern for their finances; they had been
town and he started to sort of swallow and didn’t
forced to apply for different grants, and explained
know what to say. He talked about the wind and
that the years their spouses had been ill had
the weather with me and I didn’t know who he
consumed a lot of money. Those close relatives
was. It was so embarrassing for all of us.
who had not managed the family finances before,
and so had to learn how to do it, sometimes
They felt that it was of great importance and a
experienced this as difficult.
positive thing for their aphasic relative to get out and
see friends or other people with aphasia, and they
Changes in the family’s social network. The loss of experienced relief, knowing that their relative had
friends in the family was described as the hardest someone else with them. They went together to see
part, but a few close relatives said that some friends their friends more than before, but several of the
had started to return. Some spoke about the new aphasic people went out on their own since it was
circle of friends that the aphasic relative had very important for them to meet people and they did
established, and said that this was very positive. not want to sit inside by themselves. Some relatives
Close relatives such as children living in the same felt that even when their aphasic relatives liked to
city perceived that their aphasic relative tried to see meet friends or colleagues there could be problems if
them as often as possible. They described the many they lived too far away, while others said that it was
acquaintances and colleagues who came to visit the very easy to meet their friends.
22 B. Sjöqvist Nätterlund

. . . it feels great not to always have to take care of Right now, he has been a little depressed when he
NN . . . . But NN always meets someone to chat has such a sore leg and hand . . . . It would be
with when he’s out. God’s gift if you could arrange this for him.

Sometimes NN says that he would like to live in He is displeased that he is as confined as he is, and
town so he could be a little bit closer to friends . . . he is afraid of getting sick at home and not getting
he is so social and loves to be among people and help.
join in, but you can’t really say he’s satisfied.
A number of the close relatives did not see their
The close relatives still felt secure in the knowledge aphasic relative as suffering any pain from their
that the home-help service was looking after them. disease (stroke and traumatic brain injury); there
However, while they felt that their aphasic relatives were no signs of sorrow or anger, and the aphasic
had good lives, they wished that their aphasic relative people only became angry with themselves:
had more social contacts.
In the beginning it seemed like he wanted to cut
off his arm because he was so tired of it.
Emotions in daily life. The close relatives described
how having a person with aphasia in the family in
need of support created a sense of emotional lone- Everyday life
liness and a feeling of being the one who did the
majority of the practical tasks. They found it very Managing daily routines. The close relatives experi-
frustrating not knowing how to cope with their enced their aphasic relatives’ days as being based on
family member’s problems, and having to be a large number of routines, and they emphasized the
patient. On some occasions they did not have the importance of routines in making sure that every-
energy to cope with daily chores or to manage a thing functioned in a good way. While their aphasic
conversation, and to listen to and answer the family relatives were capable of managing their daily
member. routines and chores, when it came to preparing
food and cooking the close relatives often tried to
Yes. And something that takes maybe a minute for simplify the process or had to take over the chores.
other people to sit and talk about might take Everyday life worked well most of the time, and it
15 minutes for us before we’ve figured out what was good when the aphasic relatives could walk
the problem is. And I have to have patience. I again. Some close relatives even experienced their
can’t just say that I can’t be bothered with you, aphasic relatives taking on a great deal of responsi-
I’m going now. Then you’re the enemy for the rest bility at home.
of the day.
She is able to do most daily chores . . . but some-
one who is healthy can prepare a meal more
Perceptions of their aphasic relative’s feelings. A few of
the close relatives described that they thought that quickly.
their aphasic spouses had somehow adapted to their
Those very basic everyday chores, most of it, she
aphasia, but they were still not entirely convinced:
manages. Of course, some things, cooking and . . .
I believe that she has adapted, but at the same that’s difficult.
time it is a limited life . . . . I think NN has a sense
of shame . . . . NN did not want to show her bad Past and present activities. Many close relatives
health. experienced their aphasic relatives as having always
previously been active, but in only a few cases had
Others described how their aphasic relatives had the aphasic relative resumed the activities he/she
become more sad and melancholy, and found it participated in before the aphasia (e.g. travelling,
difficult to cope with what had happened; they spending time outdoors, fishing, playing sports,
described their aphasic relatives as being depressed, gardening, practising genealogy, tinkering with
submerging, feeling excluded, and lagging behind in cars). Others revealed that their aphasic relative
conversation. Some experienced their aphasic part- had not been especially active before the aphasia,
ners becoming irritable or angry about difficulties in and so might not miss anything today. Some close
daily activities, and some described their aphasia as relatives felt that their partner had initiated entirely
depressing: new activities.
Being a close relative of a person with aphasia 23

He is never like just lying around and thinking, to paralysis in the hand/arm, but most of them found
no . . . . And another thing, listening to audio different strategies to solve this problem.
books. Never read a book in his life. But it was
something he picked up now.
Employment or the lack thereof. The close relatives who
. . . maybe I spoil him a bit you know, that he could were married to spouses who worked despite the
do more but . . . I think I was like this before aphasia experienced this as a very well-functioning
too . . . I don’t think there is that much difference arrangement, and felt that it was important for their
aphasic relatives to have an occupation and to enjoy
actually . . . . Yes, yes. I do think so. Yes, I think it’s
it. However, most of the aphasic relatives had not
quite similar to before except all the other stuff
been able to work since the onset of aphasia, although
that doesn’t work, but with everyday life things I
their close relatives described how work used to mean
don’t think I . . . it’s like before . . . . And that was
everything to them. The close relatives wished that
what I was aiming for.
their partner could return to work, and did not
believe that their aphasic relatives wanted to be
The activities of the aphasic relative were usually
unemployed, since life felt slow with no new activities
passive, immobile activities (watching TV, listening
to perform, and ‘‘his life is just like a job’’. They
to the radio/audio books, reading books/magazines,
thought that their aphasic relative had accepted the
resting), and everything seemed to take a long time
fact of being unable to work. While the aphasic
to do. One close relative said: ‘‘His activities are on relative often had the intention of going back to work,
another level than before and things are done at a it was later found that this would not be possible.
slower pace.’’
The perception of the close relatives was that Yes, he tried working part time, but that didn’t
while their aphasic relatives spent a lot of time on the work out either . . . you know he gets confused.
computer, they were only moderately interested in
what they were doing. The close relatives tried to do Importance of training. Training sessions had been the
activities together with their aphasic relatives, but at most important factor in recovery, including physical
the same time one said ‘‘you have to give each other training, communication training, and relearning to
a little space’’. It was more difficult for their aphasic read and write. Sometimes close relatives went
relative to travel by themselves on the bus or train biking with their aphasic partner, and considered
because of the stairs, and so the aphasic relative this as a good source of training. Only a few
usually travelled by car, either on their own or with described that their aphasic relative opposed training
their close relative. It was a relief when their aphasic and always had done.
relative had become a lot more active, mobile, and
free since being given an electric wheelchair. Their Outside, no, but she does go to training at the
experience was that the aphasic relative felt safer Aphasia House. She tries to go three days a week,
knowing that they could get out and move around but often it’s just two. And then she and the
without a relative having to be present. However, woman next door like to take a walk in the middle
of the day . . . . Yes, she has a cane . . . . Yes, and
some spouses (mostly wives) experienced that their
walking sticks, when she takes a walk like that.
aphasic relatives who had a wheelchair were some-
times ashamed of using it since it made them feel
Some experienced that the training worked poorly,
even more disabled; one reported that the aphasic and that they had to remind their aphasic relative if it
relative did not want to use the wheelchair, and her was to be done at all. The aphasic relative’s atten-
spouse said ‘‘I am ashamed to go in it’’. They also dance at the rehabilitation programme was a positive
spoke about how important it was for the aphasic experience, especially in the beginning. The close
relative’s self-confidence to feel that they were able relatives described how their aphasic relatives took
to perform various activities in daily life. part in different group activities, but they preferred
The close relatives described that it was very individual training, since they felt restrictions on
important for the aphasic relative to plan and write talking, understanding, and listening in groups.
down what to buy or what not to forget, or to ask the They experienced that the aphasic relatives became
close relative to help them write these things down. tired after being around people for a whole day, and
Some of them found that there were certain things then needed to rest.
their aphasic relative could no longer do, or had The close relatives perceived their aphasic relatives
forgotten how to do; nevertheless, the aphasic rela- as being very anxious about having to finish their
tives were struggling to get better. In some cases, the rehabilitation at the Aphasia House, but still under-
aphasic relative had trouble dealing with money due standing that they had developed their speech as far
24 B. Sjöqvist Nätterlund

as possible. The close relatives felt that communica- could be done; one reported the doctor as saying
tion and computer training was of great importance, ‘‘you’ll never see him again . . . ’’ and pointed out
and was needed for a longer period of time with that ‘‘that really upset us . . . ’’. Some close relatives
someone close at hand to give instructions so that felt that when their aphasic relatives went to the
their aphasic relatives would later be able to do it by hospital the health professionals did not care about
themselves. They experienced great relief, and that the close relatives, and no one asked them how they
one goal had been achieved, when their aphasic were feeling. The close relatives were not given any
relatives got their driving licence back and were able informational or emotional support; nobody ex-
to drive a car again. This allowed the aphasic relatives plained the diagnosis for them, and all they had
to drive to their training sessions by themselves, made was a lot of leaflets. Those close relatives who did
them feel more independent, and allowed them to go not live with the person with aphasia also felt a
wherever they liked. complete lack of informational, emotional, and
instrumental support from the healthcare system
It feels wonderful, now he has a goal in view . . . to when their relative developed aphasia. These close
be driving by autumn. relatives did not understand at the time that their
relatives had been stricken with aphasia.
Communication within the family. While most aphasic
relatives had had very poor speech for a long time, There was nothing whatsoever, no support at all,
the close relatives had experienced great improve- there was not the slightest support. I got to sit with
ment and development in their aphasic relative’s him for a while then they drove me out of the
speech, although it had been and still was a big room, I got to sit in the waiting room there while
problem for some. Conversations became divided they did something with him.
when the aphasic person always had to have their
close relative help them to speak; they felt that their A few close relatives had done their own research to
aphasic relative needed a sounding board, someone fill the gaps in their knowledge of aphasia. Others
to talk to about their communication problem and did not experience the first period of the illness as
how they felt. The close relatives reported that the harmful to themselves, and some could not acknowl-
aphasic partners often spoke much better at the edge the informational support they were given.
speech therapist’s, and were careless about their Some close relatives had often had to struggle to get
speech at other times. The words would come out any instrumental or informational support. Others
separately and in the wrong order, and the aphasic declared that they had not looked for help; while
relative would forget which word they were going to perhaps they should have asked for help, they
say, so it could be difficult to understand their
wanted to be capable and get along by themselves.
meaning. They spoke about the importance of not
Several needed support in the acute phase, but did
rushing the speech; they would try to listen and wait
not understand how serious the situation was, and
and still hoped for their relative’s speech to improve.
did not know who to call to get support.
Everyday conversation goes well, but I wished that
. . . no, I have to say that I think I got very little
NN could have talked more on his own, and
help. I had to find most of it out by myself, calling
expressed his feelings.
up and asking questions . . . .
He would prefer that I was with him all the time.
No, I wouldn’t hear of it . . . what’s this about
That’s difficult, and he . . . he does rely on me a lot
aphasia. Surely he’ll start talking . . . . I didn’t
and thinks that he wants me to be there in all
understand anything . . . well, it may be dumb, I
situations.
should have looked for support, but it’s so hard to
reach people in the county council. It’s hard to find
the people who have those particular resources.
The meaning of support
I’ve had to find out most things myself, calling and
The acute phase*lack of or need for support. Hearing asking about things . . . .
that their relative was suffering from aphasia was a
significantly traumatic experience for the close Only a small number of close relatives felt that they
relatives, and the beginning of the illness also left had had a very good level of contact with the
them with very traumatic experiences. They de- healthcare system, and had received a lot of in-
scribed that they did not get any emotional support formational support from it. Nurses, speech thera-
from the health care service. Several close relatives pists, and social counsellors had provided the best
were informed by the doctor that nothing more informational and emotional support; those who had
Being a close relative of a person with aphasia 25

been given support by these people claimed they Discussion


would never have been able to cope otherwise.
This qualitative interview study gave access to the
experiences of 14 close relatives of aphasic people.
Healthcare in Sweden works superbly, and NN
The main focus was on the close relative’s perspec-
has been treated very well.
tive on their aphasic relative’s experiences of every-
day activities and support in daily life, and the
Yes, I thought I’d never get myself out of this,
secondary focus was on the close relatives’ own
but . . . but she could sit and talk, and get you to
experiences of the everyday situation and support.
think, and then it felt better at once, yes . . . she The close relatives’ lives had changed greatly,
was so good that way. although most of them had accepted their situation
and had tried to make the best of it. This is reflected
Giving support to their aphasic relatives. The close by the fact that the close relatives, when talking
relatives felt that it was a great pressure to be about their life, described themselves as ‘‘living in
gainfully employed and then have to come home the present’’.
and spend a lot of time and energy supporting a At the beginning of the aphasia they were anxious
person with aphasia. Others felt that things were about their aphasic relatives, and worried about
easier now, when their aphasic relative had become leaving them alone when they were working. This
more independent and so did not need as much may have been because they did not know what
support. It appeared that some of the aphasic people aphasia meant, and no one told them about their
had replaced their old activities with new and easier aphasic relative’s problem with conversation. They
activities, but others still needed instrumental and spoke more about their own experiences of the
emotional support from their close relatives to per- aphasic relative’s everyday activities than about their
form and to participate in everyday activities. own lives, because they were more concerned about
their aphasic relative’s well-being than their own
She manages the household with a little bit of needs.
support from me . . . but . . . . Yes, it is, well, she Those living in the same household as the person
can forget, you know . . . when to cook, we have with aphasia described how earlier routines and
done that once, then she’s forgotten what to do so activities had had to be given up. Their relationships
that I have to remind her . . . . Yes, but sometimes influenced their lives when sharing a household with
she gets almost irritated when she is reminded that a person with aphasia; they had to change their roles
she has done something which she does not and try to find new ways of behaving towards one
remember. another. The close relatives in the present study also
had less time for themselves because they now had to
Several close relatives encouraged their spouses to do both their own and their spouse’s chores at home.
do such things as making and answering telephone The spouses, in particular, sometimes developed
calls, but many still did not initiate such activities on patterns of interaction that were different from the
their own. However, some had overcome their fear patterns they had beforehand, as also seen in an
and were now able to use both the landline and a earlier study (22). The close relatives also expressed
mobile phone. The close relatives who were children the wish to be able to improve the aphasic relative’s
situation in order for them to have a better life,
(not living at home), siblings, or parents of the
which was shown in different ways such as resuming
aphasic relative described that they did not feel the
participation in social life and finding new activities.
same amount of responsibility as a partner. Those
The close relatives reported that the conversa-
who had poor connections with their aphasic rela-
tional skills of their aphasic relative had improved;
tives did not offer them any specific support, and felt they thought that this was because of the training at
difficulty in talking about their parent, sibling, or the Aphasia House, and it may have reflected the
child. However, they reported that this relationship fact that their relatives had met other people with
was about the same as before the illness, and so had aphasia and now knew that they were not the only
neither improved nor worsened. Conversely, some ones. Their aphasic relatives had become more
close relatives, mostly spouses, experienced that they confident about communicating as well as speaking
provided a great deal of informational, instrumental, and writing. However, the close relatives still had to
and emotional support to their aphasic relatives, and support their aphasic relatives in participating in
they were very eager to help their relatives get better communicating with other people such as friends or
despite their aphasia, and to become more mobile colleagues. Van der Gaag et al. (1), who conducted a
and active in everyday life. follow-up study of therapy for people with aphasia
26 B. Sjöqvist Nätterlund

and their relatives, found that 93% of relatives said persons in order to help them participate in society.
that their partner’s communication had improved Research by Denman (12) shows that the provision
since coming to the centre. of instrumental support for carers should be a high
The close relatives in the present study described priority. If such support is to be effective, it must be
how their aphasic relatives were less active today, needs led and based on the expressed needs of the
and how the activities that did occur were not very close relatives.
varied; they experienced it as being quite difficult to If relatives can participate in a group, with other
suggest and find new activities in which their aphasic relatives who are in the same situation, this may give
relatives could participate. They had a number of them the strength to cope and support the person
anxieties about their aphasic relative’s future, a with aphasia in the family. According to earlier
finding that confirms the result of earlier studies studies (12,18,3335), close relatives need emotional
(10,11,18). These anxieties may have been because and informative support both before their partners
they did not know how and where to get informa- are discharged from hospital and for a long time
tion. The daily lives of those with aphasia were very afterwards. There may be a need for different kinds of
routine-based, perfunctory, and lacking in content. support, such as emotional, informative, and instru-
The close relatives did understand, but at the same mental support (18,21,36); for example in social life,
time wished they could find some way to help their in leisure time, and in the adaptation process (33,37).
partners be more active, as also seen in an earlier In order to manage their daily lives, the close relatives
study (10). need support from both healthcare and community
Earlier research indicates that information and services (3,18,34). House (21) stipulated that this
education about aphasia is a very important compo- should include instrumental and emotional support
nent in the rehabilitation programme, and, in addi- as well as informational support. The pattern of
tion, close relatives require relief in order that they support within a group of relatives in the same
may have some spare time (3,9). Research by situation may be described as a relationship between
Forsberg-Wärleby et al. (18), concerning the spouses caring, belonging, sharing, and confidence; and the
of stroke patients, indicates that the spouses’ life group constitutes a cornerstone in a support network,
situations and their ability to cope with the situation this is in line with other studies (16,32). Support may
should provide the foundation of information, edu- slow down the deterioration of people’s health, and
cation, and planning. help them remain within the community (14). The
The close relatives felt that the healthcare staff did most troubling part of the whole experience had been
not provide the support they needed when their when their friends disappeared. The close relatives in
relatives fell ill. There was an insufficiency of the present study reported feeling lonely, possibly
information about their aphasic relative’s illness, because they did not know how to handle the
and a lack of support in dealing with social isolation; situation and found it difficult to talk about the
this is in line with other studies (12,23,31). Relatives situation*and indeed might not even want to talk
have an important role in the rehabilitation of the about it*with others. Stoltz et al. (10) also found
aphasic person, and so healthcare professionals must that the relatives spoke of feeling alone. Hilari and
be aware of their need for support and include them Northcott (38) refer to numerous studies which have
in the goal-setting process (13). During the rehabi- found that people with strong social relationships
litation it is important to support not only the have lower morbidity and mortality, and better
aphasic persons but also their close relatives, and psychological health, well-being, and quality of life.
these relatives need to be involved from the begin- The inability to understand and talk with one another
ning, so they can understand and learn about was experienced as frustrating by the close relatives in
aphasia. The results of van de Gaag (1) show that the present study, and they did not want to upset their
support from a multiprofessional rehabilitation ser- partner. Generally, the close relatives in the present
vice improved the families’ communication and study were primarily concerned about their aphasic
quality of life. It is also important to support the partner and less so about their own lives and need for
close relatives in finding new activities for their support.
aphasic relatives, in order that the aphasic relatives Qualitative research could help to highlight the
do not become a great burden on their close close relatives’ lived experiences of their current
relatives. A study by Stoltz et al. (32) showed that life situations. In order to grasp these qualitative
elderly close relatives experienced negative emotions accounts, we used qualitative research interviews
such as burden, stress, and anxiety when providing (39,40), and a qualitative content analysis (25,26).
care. This is an important motive for attempting to For ethical reasons, the six relatives who declined to
support the close relatives in the first place (32) and participate were not asked to explain the reasons for
for finding ways for them to support the aphasic their standpoint. We feel that the methods we used
Being a close relative of a person with aphasia 27

were suitable for achieving our aim, and that the relatives who care for the aphasic family member.
open questions used in the interviews resulted in rich Appropriate support could consist of helping close
narrations regarding the relatives’ life situations. The relatives to come to terms with their new roles as
number of close relatives participating in the present carers, providing information about community
study was limited, because we wanted to restrict services, and organizing participation in local groups
inclusion to close relatives of the aphasic people who (12).
participated in an earlier study (24). Our aim was
not to achieve saturation, as our participants were
drawn solely from among relatives of the 20 aphasic Conclusion
people who took part in our previous study. The On the basis of the interviews, it is possible to
interviews in the present study were held with no suggest that the close relatives had increased their
time limits, and were performed mainly in the close self-confidence in predicting and understanding the
relatives’ homes. A common way of handling quali- problems caused by aphasia. While family life had
tative data in the analytical phase is to group changed a lot, most of the close relatives (usually
together similar data into themes (41); qualitative spouses) had found new ways to cope with daily
content analysis (25,30) is one way of accomplishing
activities. It appeared that they lacked support from
this. Some close relatives offered more explanations
the healthcare system, especially in the acute phase,
of the initial acute phase of stroke and aphasia, while
but most of the close relatives were satisfied with the
others spoke more about their aphasic relative’s
rehabilitation staff. This means that if they receive
current activities or about their perceptions of
support. social support from the rehabilitation staff, it will be
The chosen analytical method enabled interpreta- easier for them to manage their aphasic relatives in
tion of the underlying meaning of the interview text, terms of their everyday activities. Such social sup-
and in the present study it gave us a chance to grasp port is required not only in the short period after the
the essence of the close relatives’ experiences, and onset of aphasia, but for a long time after. Informa-
even started a process of the interviewees reflecting tional support could consist of information on what
on their own lives. The interviews gave them the aphasia means, provided both orally and in writing,
opportunity to narrate their own life situations, in a or information on how to handle their financial
way that many said they had not been able to do situation. It emerged that although the aphasic
before. We took this into consideration by perform- person had improved his/her communication, there
ing manifest or latent content analysis respectively, were still a lot of problems for some. This meant that
depending on the nature of the statements, and we the close relatives still needed informational support
do not consider that it affected credibility. The regarding how to communicate better with their
interviewer had previously performed many qualita- aphasic relatives. The results also show that the close
tive studies, but had not previously met the relatives relatives felt lonely in connection with the new
participating in this study, and the researcher plays a situation. This may mean that they needed someone
fundamental role in conducting a qualitative study. to talk to about their anxiety at the thought of living
Interviews should be conducted by a qualified with an aphasic relative, their future, and how to
researcher who is skilled at listening to what the cope with the new daily situation. Emotional sup-
interviewees are really saying, in order to understand port is therefore important. They also talked about
the underlying meaning of their narrations (42).
how important it was for their aphasic relatives’ self-
Given the careful analysis, the results should be
confidence for them to perform different everyday
trustworthy (43).
activities; however, some said that their aphasic
This study reveals that aphasia affects both the
relatives still needed support to perform and parti-
aphasic person and his/her family, including chil-
dren, in different ways. This research can provide cipate in everyday activities. Instrumental support
rehabilitation professionals in healthcare and in the could cover ways of finding and initiating new
community with more knowledge about the need for activities for the person with aphasia, as well as the
support of close relatives of people with aphasia. case where there is something that needs to be
Attention must be paid not only to the person with adapted at home. Healthcare needs to focus more on
aphasia but also to his/her close relatives, a result in relatives in need of support; in the long run, this
line with other research (8,13,44). The support should reduce the burden on the healthcare system.
provided should include informational, emotional, The results show that close relatives perform an
and instrumental support, as previously shown in important supporting and motivating function, and
other studies (5,11). The findings of the present are a driving force to train people with aphasia to
study confirm the meaning of support for close participate in everyday activities and in society.
28 B. Sjöqvist Nätterlund

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