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EMPIRICAL STUDY

Suffering caused by care*elderly patients’ experiences in community care

RUNE SVANSTRÖM, PhD 1 , ANNELIE JOHANSSON SUNDLER, PhD, Postdoctoral

research fellow 1,2

, MIA BERGLUND, PhD 1 , & LARS WESTIN, PhD

1

1 School of Life Sciences, University of Skövde, Skövde, Sweden and

2 School of Health, Care and Social Welfare, Mälardalen

University, Eskilstuna, Sweden

Abstract Background: Growing old involves many changes in life and implies an increased risks of illness and different forms of disabilities. Life may change in a radical way when a person gets a disease like dementia or moves to a nursing home due to disabilities or needs. In both cases, it often leads to an increased dependency on care where the patient becomes exposed and vulnerable and thereby at a higher risk for experiencing different forms of suffering. Aim: The aim of this study was to elucidate and gain a deeper understanding of elderly patients’ experiences of suffering in relation to community care in nursing homes and home care services. Materials and methods: A lifeworld hermeneutical approach was used. Phenomenological interviews and conversations with an open approach were conducted and analysed with a focus on meanings. Findings: The findings were presented in four main themes; an absence of the other in care, an absence of dialogues, a sense of alienation and a sense of insecurity. The findings in this study revealed that persons who were cared for in nursing homes and home care services sometimes were exposed to an unnecessary suffering. The suffering sometimes was caused by various caring actions, that is, unnecessary suffering. The suffering caused by care that aroused was due to caregiver’s inability to be present, to show their face, and truly meet the patient. Conclusion: Suffering from care increased the elderly patients’ feelings of insecurity, loneliness, and alienation; this seemed to be the foundation for patients’ experiences of being outside a human community. There was a lack of knowledge and understanding about the patient’s lifeworld.

Key words: Elderly, care, dementia, lifeworld, patient experiences, suffering

(Accepted: 18 October 2013; Published: 20 November 2013)

This study, based on patients’ and spouses’ stories of

encounters with caregivers in community care con-

texts, intends to illuminate the meaning of suffering

caused by this care. Patient suffering has been

described as a basic motive for caring (Eriksson,

1997, 2002). Erikson’s theoretical model describes

the suffering in three forms: as related to illness, as

related to care, and as related to life. The primary

objective of caring is to recognize and alleviate

patient suffering, even if the care, to achieve health,

sometimes may create a temporary, but necessary,

suffering caused by care (Dahlberg & Segesten,

2010), for example when a psychotic person is

forced into psychiatric care.

From a caring science perspective, illness or

disease, as well as health, need to be understood

as an embodied experience. Health and illness -

subjective experiences that cannot be reduced

merely to the physical attributes of a disease -

involve both the body and the lifeworld of the

patient. Philosopher Merleau-Ponty (2002/1945)

emphasizes human existence in terms of ‘‘the sub-

jective body.’’ The lived body is our ‘‘anchorage’’ in

the world; not only is it something concrete and

biological, but also it is through this bodily being

that we get access to the world and our everyday life.

Our bodily being is also a social being, and in our

bodily encounter with other human beings, Lévinas

(2005/1961) points out the face as the key to dis-

covering what a human being is. When we meet the

other human being and see the face of the other, we

can learn about our self as human beings but also

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Correspondence: R. Svanström, University of Skövde, Box 408, SE-541 42 Skövde, Sweden. Tel: �46 500 44 84 04. Fax: �46 500 44 84 99. E-mail: rune. svanströ[email protected]

International Journal of Qualitative Studies on Health and Well-Being

#2013 R. Svanström et al. This is an Open Access article distributed under the terms of the Creative Commons Attribution 3.0 Unported (CC BY 3.0)

License (http://creativecommons.org/licenses/by/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the

original work is properly cited.

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Citation: Int J Qualitative Stud Health Well-being 2013, 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603

who the other is (p. 39). This relational perspective

seems important in caregiving when it comes to the

patient’s subjective experience of suffering, health,

and well-being.

According to Eriksson (1994), suffering caused by

care occurs when the patient’s dignity and human

values have been disregarded. Being in need of

care will most often be associated with a cer-

tain degree of suffering (Fagerström, Eriksson, &

Bergbom-Engberg, 1998). The patient’s subjective

experience raises important questions in relation to

well-being and suffering. It has been argued that

recognizing the patient’s own perspective is valuable

and that this is crucial for actively including the

patient in care and, thereby, reducing the risk of

having negative experiences from care in different

care situations (Dahlberg & Segesten, 2010). Inade-

quate communication between caregiver and patient

can create suffering caused by care in the form of a

sense of insecurity for the patient.

Growing old involves many changes in life and

implies increased risks of illness and different forms

of disabilities. Life may change in a radical way when

a person gets a disease such as dementia or moves to

a nursing home due to disabilities or needs. In both

cases, it often leads to an increased dependency on

care (Nordberg et al., 2007), where the patient

becomes exposed and vulnerable and thereby at a

higher risk for experiencing different forms of

suffering (Dahlberg & Segesten, 2010).

Dementia often results in different forms of suf-

fering (Nygård & Borell, 1998; Nygård & Johansson,

2001; Nygård & Starkhammar, 2003; Phinney

& Chesla, 2003; Svanström & Dahlberg, 2004;

Svanström & Sundler, 2013). The disease affects

the person, especially in moderate and severe stages

of dementia (SBU, 2008), and it becomes more and

more problematic for the individual to anchor him or

herself in the world, which leads to difficulties in

carrying out everyday life routines (Nygård & Borell,

1998; Phinney & Chesla, 2003; Svanström &

Dahlberg, 2004; Svanström & Sundler, 2013). The

person with dementia becomes dependent on care

daily, which in many cases creates problems that cause

the person to move to a nursing home. The need for

care also affects relatives, who often invest great ef-

forts in taking responsibility for the care of the ill

individual (Almberg, Grafström, & Winblad, 1997;

Hellström, Nolan, & Lundh, 2007; Jansson, Nordberg,

& Grafström, 2001; O’Shaughnessy, Lee, & Lintern,

2010; Söderlund, 2004; Svanström & Dahlberg, 2004).

Moving into a nursing home and becoming a

resident is a significant change that can influence

both the residents and their relatives. It is a challenge

for all care workers to promote well-being and

alleviate suffering in the context of the person’s

new life situation, which often is affected by complex

care needs. To alleviate the person suffering from

these changes, care should include physical, social,

and existential dimensions (Bergland & Kirkevold,

2001). One important aspect in meeting the person’s

needs is good communication in the encounter

between nurses, nursing home residents, and their

relatives (Andersson, Pettersson, & Sidenwall, 2007;

Berglund, 2007; Westin & Danielson, 2007).

A study by Gijsberts, van Der Steen, Muller,

Hertogh, and Deliense (2013) showed that there

was a lack of communication about spiritual care in

Dutch nursing homes. Spiritual issues were ad-

dressed only informally and were not a part of the

formal care process. Oosterveld-Vlug et al. (2013)

showed in a study about residents’ experiences of

personal dignity that many residents felt discarded

and not taken seriously, simply because of their age

or illness. Waiting for help, being dictated by nurses,

and not receiving enough attention could undermine

personal dignity. Therefore, it is important that

nurses pay attention to residents’ needs of inter-

subjectivity and to interact in a social context. It is

also important for nurses to reflect on their part and

responsibility in encounters with nursing home

residents (Wadensten, 2007; Westin & Danielson,

2007). Other important aspects for the residents are

safety and confirmation as being someone in the

nursing home and having meaningful activities in

their everyday life (Cook, 2006; Hjaltadóttir &

Gustafsdóttir, 2007; Westin & Danielson, 2007).

Having dementia in moderate or severe stages or

moving into a nursing home can most likely affect

the person’s existence at a deeper level. It can be

assumed that knowledge about the existential di-

mensions of illness and well-being is essential in care

to avoid unnecessary suffering. To develop strategies

that can alleviate suffering, it is important to in-

vestigate those existential dimensions of illness and

well-being from the individual’s perspective. In hu-

man existence, suffering is related to life itself or to

different diseases that at times cannot be avoided,

but when it comes to suffering related to care, the

question of how this kind of suffering can be avoided

remains. From this point of view, it appears im-

portant to describe how patients experience the

phenomenon of suffering related to care. The aim

of this study was to elucidate and gain a deeper

understanding of elderly patients’ experiences of

suffering in relation to community care in nursing

homes and home-care services.

Materials and methods

In this study, we used a lifeworld hermeneutical

approach (Dahlberg, Dahlberg, & Nyström, 2008/

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2001) that supports investigations about phenomena

in our everyday lives. When people who are suffer-

ing from long-term diseases and simultaneously

dependent on care are interviewed, there is an

opportunity to capture their everyday life experi-

ences (i.e., parts of their lifeworld) (Giorgi, 2009).

In interviews conducted in earlier studies, we saw

a suffering that suggested that caring sometimes

could cause suffering. To further illuminate this suf-

fering, this study was conducted as part of a project

on suffering from care. A secondary analysis was

performed, which may allow researchers to apply

a new research question to data already collected

(Heaton, 2004). The reuse of data originally col-

lected in earlier studies was critically discussed by

the researcher, who found it unethical not to further

explore the suffering that called for our attention.

The aforementioned studies were approved by the

regional ethical committee in Gothenburg, Sweden

(L 263-98; Ö 403-01; Ö 446-03), and both this

study and the former studies have followed the

Declaration of Helsinki.

Participants and data material

Interviews with participants recruited from primary

and community care were analysed in this study. The

participants had been guaranteed confidentiality and

were informed that participation was voluntary. All

participants had given their informed consent.

The participants were between 72 and 90 years of

age, and they had lived with a long-term disease such

as post-stroke impairments or dementia for several

years or as the spouse of a person with dementia

for several years. The participants, except for the

spouses, had a manifest healthcare need; some were

living in nursing homes, and some were receiving home-

care services from caregivers to manage daily life.

The data material consisted of qualitative inter-

views and conversations with 25 participants. Data

had been gathered through interviews with patients

living in nursing homes and with patients with

dementia having a manifest care need and their

spouses living together at home. Data had also been

gathered through conversations with patients with

dementia having a manifest care need and living at

home alone. All interviews and conversations con-

tained detailed and different experiences of when

they suffered from care, descriptions which then

were used in this analysis. In these interviews and

conversations, the focus had been on the partici-

pants’ expressions and narratives of lived experi-

ences from their everyday life. Experiences described

from people with different diseases, as well as from

shifting contexts, formed a richness of variation in

the data material.

Analysis

The analysis was inspired by Dahlberg et al. (2008/

2001) and carried out in continuous dialogue with

the text; in the analysis, the researchers moved back

and forth in all interview texts. The analysis started

with the researchers first reading all of the interviews

to acquire a general sense of the patients’ experi-

ences of suffering. In this initial phase, interview

texts were read several times. The next step in the

analysis was a search for patterns and nuances of

qualitative meanings of suffering. After that, the text

was condensed, and meanings found in the text were

discussed and structured in themes. The meaning of

the themes was described, and four patient stories

were constructed to illustrate these meanings of

suffering caused by care. The patient stories were

formulated based on descriptions in the interviews.

The rationale for creating patient stories were

that the stories could illustrate the data and their

meaning in new ways. Another reason was to

facilitate a deeper understanding of the pheno-

menon being studied. Dahlberg et al. (2008/2001)

stress the importance of being creative and open in

the analysis in order not to define the findings too

quickly.

The four patient stories

In the four stories, the participants were given fictive

names to protect their identity. The four stories were

used to illustrate lived experiences, even if the

meanings described in the themes occurred from

more than these four persons’ interviews. The four

patients illustrated in the stories consist of two men,

one woman, and one couple. The men, Stig and

Arnold, lived in a nursing home; the woman, Anna,

lived alone in her apartment; and the couple, Astrid

and George, lived in an apartment.

Stig needed daily care; after his leg amputation, an

exuding wound developed on his stump, which was

something that gave him feelings of disgust. Arnold

did not need the same amount of care, but he was

determined and knew what he wanted, something

that eventually came into conflict with the caregiver’s

view. Both men have had many contacts with

caregivers every day and even at nights. Anna, who

had been diagnosed with dementia, was visited by

caregivers several times a day and visited a day-care

centre several times a week. She received assistance

with hygiene, meals, laundry, and cleaning in the

home. George, also diagnosed with dementia, had

no ongoing care contacts, as he felt no need for

them. Instead, it was his wife, Astrid, who was

responsible for his care, a care which primarily was

about being near George and answering his repea-

ted questions. The term ‘‘caregiver’’ is used as a

Suffering caused by care

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collective name for level-two nurses, auxiliary

nurses, registered nurses, and social workers in this

study.

Findings

The findings reveal that persons who were cared for

in nursing homes and home-care services sometimes

were exposed to unnecessary suffering. The suffer-

ing could be caused by various caring actions, that is,

unnecessary suffering. The suffering caused by care

that arose seemed to be related to caregivers’ in-

ability to be present, to show their face, and to truly

encounter the patient. Suffering from care increased

the elderly patients’ feelings of insecurity, loneliness,

and alienation; this seemed to be the foundation for

patients’ experiences of being outside of a human

community. There was a lack of knowledge and

understanding about the patients’ lifeworld. The

findings are further described in this article in these

four themes: an absence of the other in care, an

absence of dialogues, a sense of alienation, and a

sense of insecurity.

An absence of the other in care

The encounter between the caregiver and the patient

seems to bring an indication of care where the

caregiver sometimes becomes absent for the patient.

There was an uncertainty for the patients in the

nursing home and sometimes a fear of future meet-

ings in that the patients did not know what to expect

in the next meeting. Fixed times for meetings were

not plentiful, and the patient was provided with little

knowledge about care schedules, yet someone came

and helped with various activities of daily living

(ADL) tasks. The patients did not know which

caregiver would enter the room, which made them

wonder if the caregiver would treat them as a person

or simply as someone who needs care. That is, will it

be a caregiver who is not open to human contact -

a caregiver who only cares about the task that is

pre-formulated and about to be performed?

Stig talked about how young female caregivers

were more occupied with themselves and their own

appearance rather than taking care of him. This

raised profound existential questions about himself,

and he did get a feeling of disgust as he lied with the

exuding wound on his stump. He thought that this

was the reason why caregivers did not see him and

did not want to make contact or initiate dialogue

with him. As he put it, ‘‘Yes, you don’t really exist;

you become more like a ghost.’’

For the person with dementia who lived alone, the

situation was different. The patient did not know

when the caregiver, that is, the other one, would

arrive, or even if someone would come to visit. The

sense of not knowing seemed to make the patient

passive; there was nothing to wait for or prepare

for. This was evident in Anna’s story. She did

get a strong sense of loneliness when she did not

know if anyone was coming. In the conversation

with the interviewer, it became obvious that home-

care services did not intervene and leave a lasting

impression in her lifeworld.

Anna: I am alone. (Interviewer: But when you’re

in this loneliness, don’t you think that someone

will come to me in a few hours, someone I can talk

to for a while, and tomorrow I will go to the day

care centre, (No) and meet people there?) No,

I . . . live in the present. Unfortunately perhaps, but I do. (Interviewer: How far does your present

moment reach?) My present moment is today, and

what happened yesterday maybe, I won’t remem-

ber everything. No, you know, my memory is

gone.

When the caregiver only carried out the task without

the needs of the person with dementia in focus, there

was an obvious risk that the care did not leave any

sustainable traces in the patient’s world, and a feeling

of loneliness became obvious. This feeling tended

to contribute to a passive life. For the person with

dementia who lives alone, the possibility of good

meetings often seemed to occur at the day care centre,

where the patient was in a context that gave meaning.

This context also was at hand in the person’s home

but did not seem to be used by the caregivers.

The couple living at home strived on without any

meetings or help from the home-care service. The

situation was worsening slowly, and Astrid felt like

she no longer could leave her husband, not even for a

short while, as, for example, to go to the hairdresser.

In this situation, no one from the home-care service

had visited the couple or tried to find out about the

couple’s situation. No one but the couple’s daughter

realized how tired Astrid was, a circumstance that

made Astrid call and ask for relief. Even after their

difficult situation was discovered, nobody from the

home-care service went to their home for a visit. The

couple did stand alone, with no one investigating if

there was any continued need for care. Astrid did not

know her rights when she was talking to the

interviewer, and he asked what she thought about

the meeting with the home-care service.

Astrid: I have only good things to say. I have noth-

ing to complain about. They will help us . . . sigh . . . During Whitsun week, I needed to go and perm my hair and I called and asked if they could

come and be here with him while I was away.

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But then, I got him into short-term care and then

I could do it. The home care service has never

been here, but they would have come. So, I cannot

complain about them.

Her husband went to short-term care, but Astrid

could not hand over the responsibility so she visited

him. Since he wanted to come home, she brought

him home again after only 2 days. It appears from

Astrid’s statement that she found it difficult to make

demands on the home-care services. It also appeared

that there were no meetings to create a dialogue

through which needs could be expressed. The data

suggest that there was no ongoing relationship

between the couple and the home-care services.

This means that there were no clear structures in

the care, and that it was up to the patient or a spouse

to assert his or her rights. It seemed to be the

discretion of the caregivers that determined the

approach to and the content of care. This gives a

picture of a passive home-care organization that did

not really recognize basic human needs.

An absence of dialogues

Arnold: Well, they do not listen to what I say and

then I do not listen to them either, that is the way

it is. Some people you may connect with every

time you meet them and with others less so. Yes,

and with some people you may never connect

with. (Interviewer: But what does this connection

mean to you, when you really feel connected,

when the caregiver really listens to you Arnold?)

Well, but this connection really means a lot to me.

It is worth a great deal.

This conversation took place between Arnold and

the interviewer when they talked about his experi-

ences of encounters with the caregivers; it was

experienced as difficult to make contact with the

caregivers. He terms those who he felt were difficult

to connect with as ‘‘unjust’’. It seemed that the day

itself decided the form of the meeting, including the

present mood of the caregiver. Both Stig’s and

Arnold’s stories suggest an absence of an ongoing

dialogue. It was rather that the dialogue occurred in

the moment, when the caregiver was open to a

positive meeting; or, as Arnold described the situa-

tion, ‘‘They joke with me to make me happy. They

listen to me and make jokes with me and then you

feel as you really are a human being.’’

All of George’s healthcare needs exhausted Astrid.

She frequently struggled with responding to George’s

repeated questions. Sometimes, she did get irritated

and lost her patience with him, but repented shortly

thereafter. She stood alone in her care work, and

there was a great and acute risk of him ending up in

an institution such as a nursing home. Meanwhile,

Astrid expressed her situation as follows: ‘‘I’ll try as

long as I can.’’

The home-care service became aware of the

couple’s difficult situation after Astrid’s cry for

help. It is common knowledge that with dementia,

situations such as this one rarely improve. None-

theless, the home-care service seemed to neglect this

problem, had acted as if there was no problem, and

had not visited the couple. There seemed to be no

sense of responsibility from the home-care service’s

point of view to establish a dialogue with the couple.

In this case, the responsibility seemed to fall entirely

on the couple, and especially on Astrid.

For Anna, who lived alone, there seemed to be no

satisfactory dialogue either. What characterized car-

ing seemed to be the fast care meetings, where the

caregivers always were on the run to the next patient

or where the caregivers chose to focus on their own

problems, rather than an encounter that could turn

into a dialogue about the patient’s life situation.

Often what was in focus was providing the patient

with medicine or food, or quickly tidying the

apartment. The patient would then be without the

important human contact when common tasks were

performed.

Performing tasks together in a dialogue can

anchor the patient in a context, in the everyday

world. Instead, loneliness became amplified in the

contact with the caregiver. There were strong emo-

tions that took over and dominated the patient’s life,

something that was evident in Anna’s story. Care-

givers served her food and then proceeded with their

other tasks; as a result, Anna occasionally did not

eat. In the conversation with the interviewer, she

suddenly became aware of her own plight.

Anna: No, they are in such a hurry. (Interviewer:

The intention is that they give you food (yes, yes)

and that you should eat it. But, here it is like you

just you get food placed in front of you, and you

don’t eat it.) Well gee, yeah, as long as they are

present here . . .. I eat, of course. Yes. But sitting there alone, you know, day in and day out, there is

something terrible. I’ve never been alone all my

life, as I say. And now. No, I don’t want not be a

part of it anymore. Now it is enough. (Interviewer:

What do you mean when you tell me that?) Yeah

. . .. my life can end now. It is enough now.

The consequences of an absent dialogue become

obvious: the patient’s basic care need does not

become fulfilled. When caregivers are in a hurry,

the patient’s sublime voice may become only a

whisper that no one listens to.

Suffering caused by care

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This shows the value of the caregiver in seeing and

acknowledging the patient; this creates the condi-

tions for a dialogue. Stig, who lived in a nursing

home, said the following.

Stig: Yes it is, yes it is the connection, the con-

nection through the eyes. It is in the manner they

offer themselves, they are sympathetic above all,

they want to try to understand me, that says it all

really.

Human dialogue includes both speech and inter-

subjectivity where both interlocutors see the other’s

face. When a person’s face was visible, it showed his

or her interlocutor who he or she is, and in the other

one’s face, the person can see who his or her

interlocutor is. This contributes to a type of con-

firmation and thus a sense of human identity. Both a

person with dementia with a manifest care need who

lives alone and a couple where one person has

dementia with a manifest care need have difficulties

with their identity. This also applies to people who

have moved to nursing homes. When they move

from their home, they are outside of their usual

context. There will be new procedures and new

environments, which can create feelings of insecur-

ity, loneliness, and alienation. Because of this, the

occurrence of intersubjectivity between caregivers

and patients was of great importance for these

patients.

A sense of alienation

Being an active member of society becomes difficult

not only for persons with dementia with a manifest

care need but also for their partners. Sustaining life

itself may become more than enough. For those who

lived in nursing homes, there were also limited

possibilities for an active life in society. Disability

limited the possibility to be in one’s known contexts,

and the caring approach may also contribute to a

sense of alienation. The feeling of being outside of a

human communion became strong when the care in

a nursing home seemed to be, above all, about tasks

to be completed. In Stig’s story, this was obvious

when he shared examples of how caregivers came to

his room to perform some tasks without addressing

him, consequently not acknowledging him as a

person. Stig would like to talk to his caregivers, but

this did not occur often. The feeling of being alone

became powerful even though he met caregivers

frequently. In his words, ‘‘Well, you feel lonely, very

lonely, well I say, you really do.’’

The person with dementia with a manifest care

need who lives alone was in a similar situation. The

visits from the home-care services were often short

and dealt with different tasks. The caregiver may be

in a hurry and will not invite the patient to

participate in the tasks. Caregivers said that they

had much to do, and it was difficult to make any

demands on them about the content of the visits.

Here, feelings of loneliness became as obvious for

the patient living at home as for the patient in a

nursing home. Anna talked about the brief meetings

with the caregivers and that she did not feel involved

in what happened in the home. The caregiver was a

welcome companion, but the lack of conversation

about the patient’s lifeworld created strong feelings

of loneliness and alienation. When Anna talked

about her life and youth, her feelings of loneliness

were reduced, but when the pace of the caregivers

was fast and expressed a heavy workload, this often

did not leave any room for her stories.

Anna: But they are in such a hurry when they

come. They will never sit down like this and talk to

me; instead, they are running in and out and . . . and vacuuming and cleaning and . . .. They are not real company and I like, I like to converse. You

know? (Interviewer: Yes, yes, I know that. [Anna

laughs]. But what is it like for you, when they do

not stay?) Well yes, I know, but they have so much

to do, they cannot stay and converse with me.

I know this; they have so much to do, so I do not

demand it . . . but I miss it.

The couple also has had a hard time; they easily

became isolated in their home, making them feel

alienated. The planning of the care for the couple

was non-existent, and the home-care services were

not present; no one from the home-care service had

been able to help the couple. They did not get any

support and were left in solitude, and when the care

was absent, their loneliness and vulnerability were

obvious, despite them being two persons who were

together.

(Interviewer: What’s most negative about the dis-

ease?) Astrid: sigh . . . Well yes, it is that you become lonely. (Interviewer: What do you mean, lonely?)

Yes, for example, I have to give up attending my

needlecraft club meetings, and . . . now for example when bingo starts, if he doesn’t want to go, then

I have to stay home. That’s the way it is.

A sense of insecurity

The stories reveal insecurity among the patients.

Stig, for example, had no opportunity to choose the

outcomes of his encounters. One day, there was a

caregiver who sees and confirms him, and the next

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Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603

time there was another who did not give him any

confirmation at all; he became a nobody. Arnold told

similar stories: At one time when he had to go to the

bathroom in the night, he was denied this. By being

stubborn and getting angry, he did get help in the

end.

Arnold: Then I thought: ‘Now you have to speak

up’. (Interviewer: How did it go?) Well it worked

out in a good way in the end, but it’s hard not

being listened to. (Interviewer: Yes, but what did

you do to get help?) I told them off, and then I got

help, but it was sad that they did not listen to me

at once.

In Anna’s case, there were similar experiences of an

unsecure everyday life. She was not given support in

performing the everyday chores and in actively using

her home. Her life became passive with feelings of

loneliness and insecurity. One way to escape from

all of this was by going to bed and sleeping. This

inactive life affected her health negatively. In the case

of George and Astrid, there was a similar problem.

Their existence was fragile. If something happened

to Astrid’s health, this would mean that George

would not cope at home on his own. This created

an unsafe situation for both Astrid and George. He

would probably end up in an institution very quickly

if Astrid’s care should be discontinued. The dialogue

with the home-care services did not exist, and any

caregiving that would support the couple and create

basic security in their everyday life was absent. This

left the spouse with overwhelming feelings of grief

over a responsibility that she knew she could not

keep.

(Interviewer: What do you know about the future

with this disease and life with this disease?) Astrid:

Well, the only thing I know is that I will go on like

this as long as I can manage. Then, and then there

is nothing to choose about: he has to move to a

care institution. (Interviewer: You mean that he

has to move somewhere else then?) Well, first of

all, he may have to move into the short-term care.

So they have told me, I only have to call them.

But, as long as I can manage I will try. (Inter-

viewer: For how long will you manage?) Well, I do

not know. (Interviewer: What are your feelings on

a day like this?) sigh . . . Well, today I feel pretty good, but sometimes it’s hopeless. (Interviewer:

For how long have you had these feeling of

hopelessness?) sigh, Well, maybe for about six

months. (Interviewer: What is it like for you to live

with this kind of despair, for such a long time?)

Well, there is no quality of life, it’s not . . . [Astrid shortly thereafter burst into tears].

Discussion

The findings in this study reveal that persons who are

cared for in a nursing home and persons with

dementia with a manifest care need being cared for

at home sometimes were exposed to an unnecessary

suffering, a suffering caused by care. This increased

the patients’ experiences of insecurity, loneliness, and

alienation, and this can be understood as experiences

of feelings of standing outside of a human community.

The basis of the experiences was encounters without

someone to talk to. The patients in this study ex-

perienced not being secure about when, or if, the

caregiver would open an avenue for communion. In

fact, no one can know truly when this could happen,

but for these actual patients, the unclear and insecure

situation became more serious because of their

vulnerability and their dependence on help from

caregivers. Suffering from care like for these patients

has been described elsewhere, as, for example, in

hospital contexts (Berglund, Westin, Svanström, &

Johansson Sundler, 2012). Unnecessarily suffering

from care seems to appear in different caring situa-

tions, and not solely in nursing homes or in home-care

services.

If there is a culture of care that does not allow the

caregiver to confirm the patient in every single care

action, there may be a lack of a holistic view on the

care and at the same time a lack of respect for human

dignity. Kasén, Nordman, Lindholm, and Eriksson

(2008) argued that a rigid care organization with

an unreflective attitude of the caregiver in his or her

encounters with the patient can create suffering

caused by care. The basis for this lack of caring

was the caregiver’s view of humanity in which the

patient sometimes became an object. To be seen as

an object, without being involved in a dialogue, may

create a feeling of being alone and isolated in which

the patient does not get invited into a human

community. The findings in this study showed that

everyday life became insecure for the participants,

disempowering them, which made their everyday

life become passive. Life was occupied with feelings

of loneliness, a lack of identity, and a sense of

alienation, created by the absence of confirmatory

care. This weakened the patients’ and even their

partners’ identities and raised questions about if

and how the care can change the culture into a

facilitating organization that enables the patient to

feel secure and truly at home in their home. In this

study, patients experienced a sense of alienation

when feeling lonely and not connected with or

confirmed by the caregiver. When the other’s face

is absent in the caring encounter, the patient

may not feel confirmed as a human being. This

can give a non-existent, intersubjective dialogue.

Suffering caused by care

Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 7 (page number not for citation purpose)

Similar to the findings in this study, Dahlberg

(2007) describes involuntary loneliness as a feeling

of standing alone and outside of connectedness to

others. When connecting with others, this loneliness

can disappear.

A way to confirm others is by showing the face

when meeting other persons (e.g., to be truly

present). This was highlighted by Lévinas (2005/

1961), who meant that the face gives us the

recognition of the other, whose otherness then will

appear. The recognition of the other’s otherness will

appear in the moment. This was not instant and

needs constant replenishment to be kept alive, or as

Lévinas (2005/1961) put it, ‘‘The I is not a being

that always remains the same, but is the being whose

existing consists in identifying itself, in recovering its

identity throughout all that happens to it’’ (p. 36).

To have an identity means to be at home with oneself

and to be an ‘‘I can.’’

The patient’s own identity is an important part of

caring for patients with dementia. To have an

identity is, according to Kitwood (1997), to know

who one is; it involves maintaining a sense of

continuity with the past and some kind of consis-

tency across the course of one’s present life. Attach-

ment is another aspect of importance in care. The

loss of primary attachment can undermine one’s

sense of security. These aspects must therefore be

suggested as important in the care of people suffer-

ing from dementia and probably also in the care of

patients in nursing homes. Brown and Shlosberg

(2006) have concluded that the occurrence of

attachment behaviours among people with dementia

who live at home with a caregiver is not well

understood, which is an important area for further

research. The patients in this study had difficulties

with presenting their needs, especially when it came

to expressing their desires. Their sublime wish,

about the possibility to encounter the caregiver to

feel confirmed and know that you are an accounted

human being, was an unfulfilled desire. This left a

broken identification process where the person

seemed to have difficulties in grasping his or her

identity and personhood.

According to Lévinas (2005/1961), our original

identity is the basis for our existence. The finding in

this study points to a culture of efficiency and

rationality in the care that seems to focus more on

specific tasks and that the care was performed in a

pragmatic way. This may minimizes opportunities

for the caregiver to truly encounter the patient and

to meet their sublime wish, which could give the

possibility for the patient to feel valued as a human

being and to be someone, an ‘‘I can.’’ During the

encounter with the caregiver, the patient cannot

choose whether or when the encounter will lead to

confirmation; it was found to be unpredictable. The

confirmation may occur in the next encounter with

the caregiver, but it could be absent as well. Patients

may not know when the caregiver will appear, or if

the caregiver will invite them into an intersubjective

dialogue. The caregivers can be somewhere near

without truly paying attention to and acknowledging

the patient. This means that the patient may still be

feeling lonely, even if the caregiver is present.

Dahlberg (2007) describes how one can feel lonely,

even if there are other people around. Being

involuntarily lonely and not belonging to anyone

are ways of ‘‘not being’’. This can be compared to

feelings of standing outside the human community,

as found in this study.

The caring relationship is important to avoid

unnecessary suffering. Human contact and feeling

connected with the caregiver are important. In this

study, suffering was experienced when the caregiver

was absent in the care of the patient. A study by

Custers, Westerhof, Kuin, and Riksen-Waraven

(2010) showed that residents in nursing homes

needed fulfilment in caring relationships and that

the caring relationships contributed to the residents’

well-being. Such caring relationships were built

upon dialogue between the patient and the caregiver.

Caring relationships also have been identified as

important in the care of patients suffering from

dementia. A study by Rundqvist and Severinsson

(1999) showed three factors that are important for a

caring relationship: touch, mutual confirmation, and

the caregiver’s values in the caring culture. The way

that caregivers communicate in the encounter may

therefore be essential to avoid unnecessary suffering.

Building a dialogue based on encounters between

the patients and the caregivers is probably essential

to avoiding experiences of insecurity, loneliness, and

alienation, but these mutual encounters built upon

dialogue seemed to be rare in this study. The lack of

mutuality will probably obstruct the confirmation of

the patient as an individual, which may be required

to maintain a human identity. The care organization

and the caregiver did not give the patient enough

space and time that were needed to be a human

among humans, that is, a sense of belonging in a

human community (Bengtsson, 1998). All of this led

to inadequate care. Malmedal, Ingebrigtsen, and

Saveman (2009) showed in a Norwegian study of 16

nursing homes a high extent of different types of

inadequate care. The high extent confirmed that the

result was not isolated uncaring acts, but rather was

a common part of life in these nursing homes.

Although the most common uncaring acts were of

an emotional and negligent character, such as talking

disrespectfully or ignoring the patients, in some ways

the patients were exposed to unnecessary suffering.

R. Svanström et al.

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Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603

Conclusion and clinical implications

This study reveals that persons with dementia with a

manifest care need who live at home and people who

are cared for in a nursing home experience suffering.

Suffering from care increased the elderly patients’

feelings of insecurity, loneliness, and alienation; this

seemed to be the foundation for patients’ experi-

ences of being outside of a human community.

The suffering sometimes was caused by various

caring actions, that is, it was unnecessary suffering.

The suffering caused by care that arose was due to

caregivers’ inability to be present, to show their face,

and to truly meet the patient.

There was a lack of knowledge and understanding

about the patient’s lifeworld. The care organization

seemed deficient and did not rest on patients’

perspectives; that is, it was not based on a holistic

approach where a patient’s lifeworld is taken into

account. To avoid unnecessary suffering, it is im-

portant that there is a focus on caring directed to the

actual meeting between the patient and the caregiver,

as well as on what this means for the patient’s

experience of well-being in terms of security, com-

munity, and belonging. To accomplish this, some

important actions probably are required, such as

nursing guidance for both staff and managers, to

highlight the importance of each encounter with the

patient. By working with a moral care organization

that can promise dialogue between patients and

caregivers, patients probably will be supported in

finding their own rhythm of life, which includes a

sense of belonging somewhere with someone. This

would certainly help them to carry out various life

projects, which in this context, for example, could

mean inviting someone for a talk and a cup of coffee

or being invited for a walk with someone that may

include an exchange of feelings and thoughts. The

organization, in this way, would support a healthy

process in which the patient’s sense of well-being can

be promoted.

Conflict of interest and funding

The authors declare no conflicts of interests with

respect to the authorship and/or publications of this

article. The study was conducted with support from

the Skaraborg Institute for Research and Develop-

ment and University of Skövde, Sweden.

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