Protecting strategies used by sufferers of catastrophic illnesses and injuries

Protecting strategies used by sufferers of catastrophic illnesses

and injuries

ANNEANNE DEWARDEWAR RN, PhD

Assistant Professor, School of Nursing, University of British Columbia, Vancouver BC, Canada

Accepted for publication 7 February 2001

Summary

· The purpose of this research was to describe strategies used by sufferers of

catastrophic illnesses and injuries.

· Participants were adult men and women with a variety of serious illnesses and

injuries.

· Qualitative research approaches to data collection and data analysis, using

grounded theory methods were employed.

· Descriptions of the participants indicate that several strategies are used; this

discussion focuses on strategies to protect themselves from further suffering.

· Situations where participants use protecting strategies are identi®ed and

described.

· The ®ndings indicate how care-recipients try to lessen the burden on their

care-givers and to protect them from the stress of the sufferer's problems.

Keywords: care-givers, care-recipient, coping, protecting, qualitative approaches,

suffering.

Introduction

Living with a catastrophic illness or injury means that

individuals must make many adjustments to their lives.

Managing an on-going illness is extremely complex

because of the interaction between illness, life course

(biography), and everyday activities (Corbin & Strauss,

1991). For example, the stresses and strains associated

with everyday life can become magni®ed as illness makes

everyday tasks more dif®cult. Ageing may bring its own

challenges and can accentuate existing health problems.

The illness itself has demands such as following treat-

ment regimes that can mean modi®cations in life-style.

These changes require individuals to be adaptable at a

time when they have diminished personal and/or phys-

ical capabilities and the ongoing nature of their condition

is a constant strain on individual resources. The purpose

of this study was to understand the experience of bearing

a catastrophic illness or injury and to de®ne and describe

this experience. Catastrophic illnesses and injuries were

de®ned as those for which suffering was unending

because the condition would always be present, even if

there may be some improvement from time to time.

Focusing on how individuals manage these situations,

this study undertook to elucidate strategies which

individuals used in these circumstances and to compare

these strategies with those identi®ed in existing theories

and existing literature.Correspondence to: Dr A. Dewar, T254-2211 Wesbrook Mall,Vancouver BC, Canada, V6T 2B5 (tel.: 1 604 822 7465;fax: 1 604 822 7466; e-mail: [email protected]).

Journal of Clinical Nursing 2001; 10: 600±608

600 Ó 2001 Blackwell Science Ltd

Literature review

Lazarus & Folkman (1984) transactional theory of coping

has been commonly used to explain the strategies used by

suffering individuals to manage their illnesses or injuries.

This theory suggests that individuals appraise each

person±environment encounter. The appraisal process

has a primary component that determines the degree of

threat, harm, challenge or bene®t involved, and a secon-

dary component that considers the resources available to

manage the encounter. Emotions arise from the appraisal

process and coping strategies are implemented to manage

the emotional responses and, if possible, manage the

problem. Coping research attempts to identify the most

helpful strategies and broadly classi®es them into prob-

lem-focused strategies, which address circumstances that

can be changed, and emotion-focused strategies which

limit distress in circumstances that cannot be changed

(Lazarus & Folkman, 1984). Generally problem-focused

coping is considered to be more helpful than emotion-

focused strategies but some authors argue that emotion-

focused coping is also effective and in some situations is

the only type of strategy that is appropriate (Lazarus,

1993; Pollock & Sands, 1997).

Coping has been extensively studied, but constantly

changing circumstances involved in each person±environ-

ment encounter leave us with much to learn about how

individuals manage experiences of continuous suffering.

According to Cassell (1991), suffering is `distress brought

about by the actual or perceived impending threat to the

integrity or continued existence of the whole person.' The

work of Cassell (1982) was important because he drew

attention to the emotional as well as physical dimensions of

suffering. Suffering accompanies many of the symptoms,

treatments and circumstances of ill health, and is consid-

ered to be a distressing experience (Cassell, 1982; Steeves

et al., 1990; KuuppelomaÈki & Lauri, 1998). Several authors

have noted the need to de®ne the concept of suffering and

the importance of ®nding meaning in suffering (Cassell,

1982; Kahn & Steeves, 1986; Cassell, 1991; Rodgers &

Cowles, 1997). There is also a growing body of nursing

literature concerning: interpreting and recognizing suffer-

ing (Steeves et al., 1990; Flaming, 1995; Gunby, 1996);

managing suffering (Eriksson, 1992; Lindholm & Ericks-

son, 1993; Dildy, 1996); factors that contribute to suffering

(KuuppelomaÈki & Lauri, 1998); how nurses and patients

describe suffering (Lindholm & Eriksson, 1993); and

factors that patients ®nd helpful in nurses to lessen their

suffering (Fagerstrom et al., 1998). There is little in the

literature concerning what strategies individuals use to

lessen their own suffering in association with illness.

Social support has been discussed as an important

coping resource in managing illness (Corbin & Strauss,

1988; Northouse, 1988; Miller, 2000). Social support has

been hypothesized to provide a buffer between the

individual and sources of stress (Cohen & Syme, 1985)

and to provide tangible assistance in meeting needs

(Miller, 2000).

One of the challenging aspects of managing illness and

injury is maintaining social support and preserving

interpersonal relationships which are valued and import-

ant coping resources (Silver et al., 1990). An important

aspect of maintaining interpersonal relationships is being

able to reciprocate. Reciprocity has been de®ned as `the

perception of reciprocated exchange of valued tangible or

emotional commodities' (Tilden & Gaylen, 1987). If one

person in a relationship must depend upon another for

care, the ability to reciprocate is compromised and the

relationship becomes unequal. Equity theory states that

people in unequal relationships experience distress and

will attempt to ease their distress by attempting to redress

the imbalance (Walster et al., 1978). Sufferers may

believe that they are limited in their abilities to recipro-

cate for the support they receive and thus are unable to

address this imbalance. As a result the normal exchanges

between sufferers and their signi®cant others are com-

promised.

Some writers have explored the nature of reciprocity in

care-giving (Neufeld & Harrison, 1995; Carruth, 1996;

Carruth et al., 1997). These studies have noted that

negative exchanges between care-giver and care-recipient

decrease care-giver satisfaction (Carruth, 1996; Carruth

et al., 1997). The extent to which care-recipients are able

to reciprocate warmth and regard and engage in positive

exchanges can balance the demands of providing physical

assistance on care-givers (Carruth, 1996; Carruth et al.,

1997). However, it is important to note that research has

focused on what care-givers need to maintain their roles

and prevent care-giver strain, but has paid less attention to

the needs of sufferers in these interactions. One exception

is Miller (2000), who identi®ed preserving relationships

with family and friends who satisfy dependency needs as a

coping task for chronically ill adults. However, more

explication is needed about how care-recipients feel and

what strategies they use when their abilities to reciprocate

are compromised.

Methods

A total of 28 participants were categorized into three broad

groups of catastrophic illnesses or injuries: those with

cancer; those who were severely disabled, for example

Issues in patient care Protecting strategies for catastrophic illnesses 601

Ó 2001 Blackwell Science Ltd, Journal of Clinical Nursing, 10, 600±608

from spinal cord injuries or multiple sclerosis; and those

with other conditions, including severe heart disease,

chronic pain, end stage renal disease, severe burns, skin

disease and chronic fatigue. Participants were categorized

into these three groups following theoretical sampling

with the following rationale: a diagnosis of cancer is

considered catastrophic because of the fear surrounding

the diagnosis and the ongoing concerns about exacerba-

tions; disability that limits mobility is considered one of

the most stressful aspects of illness and other illnesses

were included to extend the data and test concepts that

emerged from the analysis (Glaser & Strauss, 1967;

Glaser, 1978). Grounded theory methods were used to

describe the processes and strategies used by individuals to

bear their illnesses and injuries.

The sample selection was opportunistic initially,

because participants were invited to take part in the study

by individuals who knew them, such as work colleagues,

friends and nurses who worked with them; as the research

proceeded, some participants suggested others whom they

knew (snowball sampling). The individuals who

approached potential participants brie¯y described the

purpose of the study, indicated that they were under no

obligation to participate and determined whether they

were willing for the researcher to telephone them and

elaborate further on the study. Once the participants

agreed, they were telephoned and the purpose of the study

was explained, making it clear that they were not obliged

to participate. Only one individual refused to participate

when contacted. When participants agreed to take part in

the study, an initial appointment was arranged at a time

and place of their choosing. At the initial meeting, the

purpose of the study was once again explained and they

were given the option of being in the study; informed

consent was then obtained. The ethics committee of the

participating university approved the research. As the data

analysis proceeded, the selection of participants was

guided by theoretical sampling which extended the

analysis and developed the emerging theory according to

the methods described by Glaser & Strauss (1967) and

Glaser (1978). Theoretical sampling led to the diversity of

illnesses and injuries.

All participants had lived with their conditions for a

minimum of 3 years; most had endured them for 5 years

or more. Participants' ages ranged from 18 to 75 years;

12 men and 16 women were interviewed, and all were

Caucasian with educational backgrounds ranging from

grade school to tertiary studies. Most participants chose

to be interviewed at their homes. They were asked to

describe their illness or injury from the onset and the

interviews were tape-recorded. All but three participants

were interviewed at least twice, and I interviewed all but

two of the participants. The initial data were coded by

using participants' own words as in vivo codes. Later in

the analysis, these in vivo codes were collapsed into

categories, named and de®ned. As an example, an early

in vivo code was `blowing up at signi®cant others'. Later

this code became `responding to others' and eventually

became part of `protecting'. The method of constant

comparison was used to develop the categories by

comparing interviews and participants (Glaser & Strauss,

1967). To ensure rigor of the ®ndings, transcripts were

given to a data analysis group for discussion of themes

and categories. Some researchers (Guba & Lincoln,

1981; Huberman & Miles, 1994) suggest having tran-

scripts reviewed by other researchers as a means of

establishing credibility of the themes and ®ndings. As

different themes and questions emerged from the data,

these were checked with successive interviews and

participants. A core category that emerged after analysis

was entitled `limiting the boundaries of suffering'

(Dewar & Lee, 2000). This core category described the

majority of the variation and occurred most frequently in

the data (Glaser & Strauss, 1967; Chenitz & Swanson,

1986).

Findings

`Limiting the boundaries of suffering' was individuals'

efforts to bear the dif®cult and complex physical and

emotional issues involved in managing their circumstances'

(Dewar & Lee, 2000). Over time, they developed and

re®ned strategies to `limit the boundaries of their suffer-

ing'. These strategies represented adaptation to their

changed and changing circumstances. Many different

strategies were employed, the most frequent strategies

being `protecting', `modifying', and `boosting' (Dewar &

Lee, 2000). `Protecting' strategies were tactics used by

participants to decrease the distress emanating from

interactions with other individuals and from dif®cult

situations. `Modifying' strategies were efforts to manage

their daily lives and `boosting' strategies were efforts to

enhance their feelings of self-esteem.

This paper discusses `protecting' strategies used by the

participants. `Protecting' is complex because it involves

efforts to prevent further suffering. To avoid further

distress, sufferers had to `protect' themselves from others

and from situations that exacerbated their feelings of loss.

Because their illnesses and injuries also affected the lives

of their signi®cant others, participants also tried to

`protect' them and to maintain their relationships with

these important individuals.


602 A. Dewar

CIRCUMSTANCESCIRCUMSTANCES WHEREWHERE PROTECTINGPROTECTING SELFSELF

WASWAS REQUIREDREQUIRED

The data revealed that participants needed to `protect'

themselves from others. Òthers' were signi®cant others,

friends, co-workers, strangers and health professionals.

Participants had to initiate `protecting' strategies because

they sometimes endured angry and insensitive comments

from this group. The following examples, from the story

of a woman with multiple sclerosis, illustrate of this type

of remark. This participant's family was angry at her and

could not understand that her circumstances were beyond

her control:

I said that I wanted a lift put into my house instead of

a ramp, which I felt would be more useful as my

condition deteriorated. My father became very angry

and said if that was my attitude that I was going to

get worse, no wonder I wasn't getting any better.

My daughter said, `You mean you went to the

hospital all this time and you still didn't get better!

You still can't look after me'.

These remarks demonstrated a lack of knowledge about

the participant's limitations and emotional suffering and

were very upsetting to her. She learned to `protect' herself

by being patient with her signi®cant others until they

adjusted to her diminished physical capabilities and, in her

terms, àccepted her as she was'. Having to adjust to the

needs of the family increases the burden of illness.

However, signi®cant others also experienced their own

distresses from participants' illnesses.

Several participants indicated that, as well as enduring

comments from their signi®cant others, they were the butt

of insensitive comments from friends, co-workers and

strangers. One such example was when friends commen-

ted that spouses and families were `good' because they `put

up with' the sufferer. Participants felt that their efforts to

endure their circumstances and maintain social relation-

ships were not recognized, but the efforts of their

signi®cant others were acknowledged. Friendships were

dif®cult to maintain: one disabled participant believed that

she had to work harder to have friends than able-bodied

people. Several noted that, because of their compromised

health, they saw less of their friends. Losing friends was

painful and it meant that participants' awareness of their

problems was highlighted:

I know some friends I had at work who said that they

just cannot bear to go to a hospital and see somebody

sick. [One friend] said, Ì won't be coming up to see

you because I just can't'. And I thought, nothing to

do with what I am feeling but, never mind. I said,

`You don't have to come and look at me.' I was a

pitiful sight.

Several participants commented that frequently stran-

gers would make insensitive and thoughtless comments.

One noted:

People around their 60 s come up and say, Òh gee, I

wish I could have your wheelchair to get around

with.' I'm saying, Ìf you want the wheelchair give us

your legs, will you, so I can get up and walk.' It

makes you feel funny that they want to get your

wheelchair and I'd rather be walking around.

Some participants had to `protect' themselves from

healthcare professionals. In some circumstances nurses

and other healthcare professionals demonstrated a surpri-

sing lack of knowledge about patients' conditions. Lack of

knowledge alone was a problem but, when coupled with

insensitivity and a disregard for patients' needs, it was

especially distressing. Two participants with signi®cant

decreased physical mobility described how they reacted

under circumstances where they believed nurses were both

insensitive and not knowledgeable:

The physio sat me up one day in a splint that holds

your neck up at the back. The physio went home at

lunch time and I was still sitting up and I ended up

getting a break in my backside. I asked the nurses to

put me down and they wouldn't. [They] said, I

couldn't feel. But I could! So I abused them

[verbally].

She and another nurse were sitting and I could hear

them say: `She's one of those!' And as I was thinking,

`What are one of those'? All I could think of was I

couldn't walk. Then I heard them say, Ànd I don't

believe that she can't walk'. Oh G** !!!!! Well I didn't

say anything at the time, but I made a few nasty

remarks to that nurse later on.

In response to insensitive comments from health

professionals, patients retaliated by whatever means they

could. As examples, they took revenge on nurses by

making hurtful remarks and asking if nursing was really

their chosen career. A quadriplegic participant concurred

with this approach and commented, `Your tongue is the

only weapon that you have.'

Other methods used to retaliate against health profes-

sionals were more devious and included playing tricks on

nurses or refusing to co-operate with them. Some attempts

at retaliation had potentially harmful effects, as this

participant stated:

I would hold the pills in my mouth and pretend to

swallow, then I would spit them out. I knew what I

was doing. It was almost like a victory. It was a means

of establishing control.



Participants also `protected' themselves from healthcare

professionals by being hyper-vigilant about the care they

received, asking questions and insisting that their wishes

be followed when procedures were performed. However,

in many circumstances they were afraid to alienate their

care-givers and thus were cautious about their comments

and behaviour. One participant, who suffered a spinal cord

injury, describes the off-hand manner in which he was

treated when he needed help emptying his urinary

catheter bag:

I made it down [to the nursing station] and this nurse

was sitting at the station and I went to wheel around

the corner and she said, `Where are you going'? I

said, Ì am going to see Y' (a nurse that he knew). She

replied, Òh, Y is busy, you get back up in your room

and watch TV and wait till your nurse comes back'. I

was nearly going to say something to her but I might

have ended up losing my temper so I didn't. Some

places if you blow your stack at them, they kick you

out.

Although other individuals were a source of both

distress and support, there were also situational factors

that exacerbated feeling of loss. Participants `protected'

themselves by minimizing their exposure to any circum-

stances that would accentuate these feelings. For example,

one participant, who was unable to walk due to his

multiple sclerosis, refused to return to the small town

where he grew up. This intensi®ed feelings of loss,

because it brought back memories of his youth and was a

painful reminder of his physical limitations. Others

avoided activities that they could no longer perform as

well as they were previously able to.

PROTECTINGPROTECTING SIGNIFICANTSIGNIFICANT OTHERSOTHERS

As well as `protecting' themselves from others and from

situations that exacerbated their feelings of loss, participants

also believed that they had to `protect' their signi®cant

others. They observed that their health conditions imposed

on the lives of signi®cant others. Not only did the latter

endure emotional distress but they carried extra burdens of

physical work, ®nancial pressures, and additional role

responsibilities as parents, spouses, or siblings. If partici-

pants could not assume their share of the responsibilities,

they felt uncomfortable with the inequality of the situation

with respect to their signi®cant others. One participant, who

had been married for a number of years prior to becoming

disabled, required a high level of physical care. Having his

spouse provide this care was, according to him, `not in the

original [marriage] contract'. He went on to comment that

no one would sign up for a job that required you to `fetch,

carry and do everything for another individual'. He believed

that his severe disability limited the life-styles of his spouse

and children and that he had not been able to participate

fully in his role responsibilities:

You increase the workload upon someone else. And

you're getting back to that part where, it's not only

the person who has the accident that is condemned

virtually to a wheelchair through no fault of other

people. It's just bad luck. But there is a whole chain

of people that are affected by the misfortunes of the

person that winds up in the wheelchair.

Most participants were very concerned about the

physical and emotional burdens on their signi®cant others

and used `protecting' strategies to lessen their workload,

limit their emotional suffering and minimize their distress.

Lessening the burden on others was more important that

the participants' desires to release their own emotions,

share their worries, or obtain tangible assistance. One

individual, who was in the terminal phase of cancer,

commented that if he became too much of a burden for his

family, he was prepared to end his life by taking sleeping

pills. He stated, `You get too much for them, then it's over'.

PROTECTINGPROTECTING STRATEGIESSTRATEGIES

Some participants hid the extent of their physical and

cognitive limitations, limited the amount of information

that they shared with others about their condition and

concealed their own distress. For example, several partic-

ipants who had been told that they might have cancer

hesitated to tell their signi®cant others. They believed that

upsetting them with such devastating news would achieve

nothing and would only magnify their own distress, so they

concealed the information as well as their own emotional

reactions. Concealing their distress was a dif®cult but

bene®cial strategy. One participant, who had just been

diagnosed with cancer, described how he `protected' his

signi®cant others by hiding his own anxiety:

As the father of the family, I tried to quell it in

others. And persuade them that there was nothing to

worry about. So I was trying to cope with my own

anxiety and be the good leader and keep the troops

under control as well. Not be the one to jump out of

the lifeboat ®rst or whatever image came to my mind.

That's the way I thought about it. I mustn't get them

any more anxious than they are. I must present a bold

face to them even though (laughter) I don't feel like

it. And I think that helped me, having to just to show

a calm exterior or whatever to the people in the

family who knew about it, at least they needed me to

pretend I was coping.


604 A. Dewar

Talking to outsiders instead of to their signi®cant others

was another helpful strategy. As one participant who had a

mastectomy stated, Ì would talk to my neighbour who was

a woman whom I thought would understand.' Some

joined support groups because they believed these groups

lessened the burden on their family. Support groups

provided an avenue for sharing common concerns and

discussing their situation in an atmosphere of mutual

understanding and support. As one participant commen-

ted, Ì would rather take the miserable stuff and dump it

where it belongs.'

When their condition generated an additional workload,

participants modi®ed their requests for assistance and

tried to do things for themselves; this enabled the

individual to remain in control and decreased feelings of

dependency. Being dependent was particularly stressful

for participants when the verbal exchanges that would be

part of the normal discourse in an equitable relationship,

were constrained. One disabled woman commented that if

she was annoyed at her husband she felt her negotiating

power was limited, Ìf he was being a jerk there was no

way I could say anything because I might have to depend

upon him to lift me off the couch.' This participant went

on to comment that it was uncomfortable to live your life

feeling that you must always be grateful to others for their

assistance.

Another `protecting' strategy was to bargain with

friends by offering help in exchange for physical assist-

ance. One participant described how she could not care for

her friend's children because she lacked the physical

stamina, but she could listen to them when their lives were

coming apart. Being able to reciprocate in a relationship

increased participants' feelings of equity.

CONSEQUENCESCONSEQUENCES OFOF USINGUSING PROTECTINGPROTECTING STRATEGIESSTRATEGIES

Participants recognized that there was a limit to what

other people will endure, and purposely chose strategies

that would maintain their social support. As discussed,

these strategies included suppressing emotions and

minimizing their own needs. However, there was an

emotional cost to hiding their emotional responses, as

described by this individual who had suffered a

spinal cord injury and was dependent upon others for

care:

I know it is not fair on mom, I blast mom for it and it

is really the girls (nurses) I am blasting.

This suggests that suppressing emotions meant that

participants eventually reached their limits of endurance

and they had to release their pent-up emotions. A woman

who had just had a mastectomy said:

So if I was that upset, they would be upset and then

we'd all be upset for what? It wouldn't change

anything so I suppose I kind of hid what I really felt,

I wanted to scream and shout and cry, which I did

after I woke up in the recovery room.

At times signi®cant others were the targets of their

released pain. Some participants commented about

becoming irritated with their families when they felt

stressed or in pain. At other times healthcare professionals

were targeted. These emotional reactions jeopardized their

social support and increased their feelings of vulnerability.

Discussion

An individual bearing an illness or injury develops

`protecting' strategies to prevent further suffering. These

strategies involve primarily protecting the self from

others, but also protecting the self from situations that

might be distressing, and protecting their signi®cant

others.

These individuals are in the paradoxical situation of

needing others, yet having to `protect' themselves during

social interactions. Participants in this study valued their

signi®cant others and were sensitive about over-burdening

them. The Lazarus & Folkman (1984) transactional theory

of coping lists signi®cant others as an important coping

resource. If signi®cant others are distressed and unable to

offer support, then not only is the participant's own

distress magni®ed but, they have lost an important coping

resource. Participants in this study indicated that strat-

egies such as limiting information, hiding symptoms,

minimizing emotional responses, limiting requests for

assistance and sharing problems with outsiders lessened

the distress of their signi®cant others and preserved these

important relationships. This indicates a limitation of the

coping theory, which suggests strategies to deal with one's

own distress but is limited in describing strategies for

managing the distress of signi®cant others arising from the

individual's health concerns.

Appraising social relationships as valued resources is

similar to description by Russell et al. (1997) of protective

care receiving, whereby care-recipients attempt to keep

their care-givers happy by guarding their feelings and

allowing them to give care in the way that they wish. The

concept of guarding others' feelings appears to have some

congruency with the `protecting' strategies described in

this study. However, these `protecting' strategies indicated

participants' needs to `protect' themselves from distressing

reactions in their signi®cant others, such as anger.

`Protecting' strategies are particularly important when

individuals are immobile and must depend on signi®cant



others to meet many of their physical needs. People are

extremely vulnerable in these circumstances and the

®ndings indicate that they are cautious about their

comments and behaviour, which limits the normal

exchanges in a relationship. Participants were also

concerned about being a burden and distressing those

people who are very signi®cant in their lives.

`Protecting' strategies were also required when it was

not possible to hide a condition, such as a disability, or

when the health condition was well known to others.

Other authors have described patients' efforts to hide their

conditions. AhlstroÈm & SjoÈdeÂn (1994) discuss secretive-

ness used by patients with muscular dystrophy and de®ne

secretiveness as patients' feelings of shame about their

illness and their efforts to avoid situations where the

illness would be revealed to others. Miller (2000) describes

hiding and concealing as ways to maintain normality. In

contrast to other studies, this research has identi®ed that

concealing one's circumstances to appear normal is not

always possible, so sufferers must develop other skills to

`protect', minimize, or even ask for assistance. These skills

are needed in a variety of interpersonal interactions.

Developing `protecting' strategies is an ongoing process

that requires modi®cation of the strategies as the demands

of a situation change, such as a further deterioration in

health. This requires work and effort and strains an

individual's resources which are already tested to capacity.

Other researchers (Strauss et al., 1985; Fagerhaugh et al.,

1987) have recognized the work that patients do in the

context of an illness. According to these authors this work

involves undertaking many actions to aid recovery, such as

coughing, mobilizing, producing specimens, enduring

painful procedures and being vigilant about the care

received from health professionals. Additionally, the

patient is expected to cooperate by making maximum

efforts to maintain a cheerful demeanour and minimize

expressions of distress to avoid being labelled as trouble-

some. It is understandable that in this context patients

develop strategies to `protect' themselves from further

distress.

Other authors (Lindsey, 1996; McWilliam et al., 1996)

have identi®ed that individuals seek opportunities to be

healthy when living with illness. Lindsey (1996) describes

seeking and connecting with others as a theme of health

within chronic illness, and further notes that being able to

relate to and assist others despite chronic illness is an

indication of health. `Protecting' strategies are a means of

maintaining relationships with others and have many

positive bene®ts. However, as others researchers

(McWilliam et al., 1996) have identi®ed, this requires

energy and commitment.

Previous research has identi®ed that negative exchanges

affect care-givers (Carruth, 1996; Carruth et al., 1997),

but the present study has identi®ed that care-recipients are

also affected by negative exchanges and are in a much

more vulnerable position. Care-givers have identi®ed that

receiving warmth and regard and engaging in positive

exchanges with care-recipients balances the demands of

providing physical assistance (Carruth, 1996; Carruth

et al., 1997). However, further exploration of care-recip-

ients' opinions on reciprocity would help our understand-

ing of their needs. Using `protecting' strategies described

in this research may be ways of addressing the imbalance

perceived by care-recipients and making the situation

more equitable so that distress, as described by equity

theory (Walster et al., 1978), is lessened but not com-

pletely alleviated.

Participants in this study indicated that, although at

times they retaliated against health professionals, they

were also cautious during their interactions with them to

avoid jeopardizing their support. Thorne & Robinson

(1989) refer to the loss and reconstruction of trust between

consumers and healthcare providers as `guarded alliance'.

When patients must continue to receive healthcare on a

long-term basis they must develop strategies that allow

them to negotiate the system. This suggests an additional

burden of illness when individuals must learn to manage

the system that is intended to support them.

The ®ndings of this research add to the literature on

how individuals cope with continuous suffering by

describing strategies that are helpful in lessening their

intra-personal and interpersonal distress. Gender differ-

ences were not found. The research acknowledges that

maintaining interpersonal relationships during illness and

injury is complex.

The individuals who participated were willing to

describe their situation. It was not possible to isolate

those who were managing well from those who were not,

but everyone described the distress they experienced, how

it affected them and how they attempted to resolve it.

Most participants had endured their circumstances for a

number of years, and their descriptions re¯ect on past

experiences as well as their present challenges. Because

this was a small group their strategies may not be universal

and future investigations could focus on elucidating initial

`protecting' strategies and those that were used later in the

experience.

Conclusions

The ®ndings of this study suggest that patients bear, not

only their own suffering, but also that of others. In chronic


606 A. Dewar

illness situations it is important to be aware of this

additional and continuous burden for the sufferer, and of

the efforts to limit their own suffering and that of others.

With current trends towards early discharge and home

care, many patients will receive more care from their

signi®cant others. This may be problematic if patients

believe their signi®cant others are stressed. Clients may

minimize their problems in an effort to maintain their

social support or may retaliate against their care-givers.

Nurses are in a position to make assessments of clients and

their signi®cant others and to assist clients to develop

suitable strategies to minimize distress. Making care-

givers aware that care-recipients have needs to reciprocate

for care received and that care-givers have needs for

warmth and regard, can facilitate communication between

family members.

Some of the verbal aggression directed at nurses may be

protecting strategies as well as measures to regain control.

The issue of protecting the self from nurses is important.

Often nurses see themselves as patient advocates but an

awareness that their behaviour may at times be antagon-

istic and contribute to suffering is crucial. Being aware of

the importance that patients place on self-reliance as an

emotional coping strategy is an important factor in

delivering nursing care.

References

AhlstroÈm G. & SjoÈdeÂn P. (1994) Assessment of coping with

muscular dystrophy: a methodological evaluation. Journal of

Advanced Nursing 20, 314±323.

Carruth A.K. (1996) Motivating factors, exchange patterns, and

reciprocity among caregivers of patents with and without

dementia. Research in Nursing & Health 19, 409±419.

Carruth A.K., Tate U.S., Moffett B.S. & Hill K. (1997) Recipro-

city, emotional well-being, and family functioning as determi-

nants of family satisfaction in caregivers of elderly parents.

Nursing Research 46(2), 93±100.

Cassell E.J. (1982) The nature of suffering and the goals of

medicine. New England Journal of Medicine 306, 639±645.

Cassell E.J. (1991) Recognizing suffering. Hastings Center Report

21(3), 24±31.

Chenitz W.C. & Swanson J.M. (1986) Qualitative research using

grounded theory. In: From Practice to Grounded Theory (Chenitz

W.C. & Swanson J.M, eds). Addison-Wesley, Menlo Park, CA,

pp. 3±15.

Cohen S. & Syme L. (1985) Issues in the study and application of

social support. In: Social Support and Health (Cohen S. & Syme

L, eds). Academic Press, Orlando, FL, pp. 3±22.

Corbin J. & Strauss A. (1988) Unending Work and Care: Managing

Chronic Illness at Home. Jossey-Bass, San Francisco.

Corbin J. & Strauss A. (1991) A nursing model for chronic illness

management based upon the trajectory framework. Scholarly

Inquiry for Nursing Practice: an International Journal 5(3), 155±174.

Dewar A.L. & Lee E. (2000) Bearing illness and injury. Western

Journal of Nursing Research 22(8), 912±926.

Dildy S.P. (1996) Suffering in people with rheumatoid arthritis.

Applied Nursing Research 9(4), 177±183.

Eriksson K. (1992) The alleviation of suffering ± the idea of caring.

Scandinavian Journal of Caring Science 23, 119±123.

Fagerhaugh S.Y., Strauss A., Suczek B. & Wiener C.L. (1987)

Hazards in Hospital Care. Jossey-Bass, San Francisco.

Fagerstrom L., Eriksson K. & Engberg I.B. (1998) The patient's

perceived caring needs as a message of suffering. Journal of

Advanced Nursing 28(5), 978±987.

Flaming D. (1995) Patient suffering: a taxonomy from the nurse's

perspective. Journal of Advanced Nursing 22(6), 1120±1127.

Glaser B. (1978) Theoretical Sensitivity. The Sociology Press, Mill

Valley, CA.

Glaser B. & Strauss A. (1967) The Discovery of Grounded Theory.

Aldine, Chicago.

Guba E.G. & Lincoln Y.S. (1981) Effective Evaluation. Jossey-Bass,

San Francisco.

Gunby S.S. (1996) The lived experience of nursing students in

caring for suffering individuals. Holistic Nursing Practice 10(3),

63±73.

Huberman A.M. & Miles M.B. (1994) Data analysis and data

management methods. In: Handbook of Qualitative Research

(Denzin N. & Lincoln Y., eds). Sage, Thousand Oaks, CA,

pp. 428±444.

Kahn D.L. & Steeves R.H. (1986) The experience of suffering:

conceptual clari®cation and theoretical de®nition. Journal of


KuuppelomaÈki M. & Lauri S. (1998) Cancer patients' reported

experiences of suffering. Cancer Nursing 21(5), 364±369.

Lazarus R.S. (1993) Coping theory and research: past, present, and

future. Psychosomatic Medicine 55, 234±247.

Lazarus R.S. & Folkman S. (1984) Stress, Appraisal and Coping.

Springer, New York.

Lindholm L. & Ericksson K. (1993) To understand and alleviate

suffering in a caring culture. Journal of Advanced Nursing 18,

1354±1361.

Lindsey E. (1996) Health within illness: experiences of chronically

ill/disabled people. Journal of Advanced Nursing 24, 465±472.

McWilliam C.L., Stewart M., Brown J.B., Desai K. & Coderre P.

(1996) Creating health within chronic illness. Advances in Nursing

Science 18(3), 1±15.

Miller J.F. (2000) Coping with Chronic Illness: Overcoming Power-

lessness, 3nd edn. Davis, Philadelphia, PA.

Neufeld A. & Harrison. M.J. (1995) Reciprocity and social support

in caregivers' relationships: Variations and consequences. Qual-

itative Health Research 5(3), 348±365.

Northouse L.L. (1988) Social support in patients' and husbands

adjustment to breast cancer. Nursing Research 37(2), 91±95.

Pollock S. & Sands. D. (1997) Adaptation to suffering. Clinical

Nursing Research 6(2), 71±185.

Rodgers B.L. & Cowles K.C. (1997) A conceptual foundation for

human suffering in nursing care and research. Journal of


Russell C.K., Bunting S.M. & Gregory D.M. (1997) Protective

care-receiving: the active role of care-recipients. Journal of




Silver R.C., Wortman C.B. & Crofton C. (1990) In: Social Support:

an Interactional View (Sarason B., Sarason I. & Pierce G., eds).

John Wiley and Sons, New York, pp. 397±426.

Steeves R.H., Kahn D.L. & Benoliel J.Q. (1990) Nurses' interpret-

ation of the suffering of their patients. Western Journal of Nursing

Research 12(6), 715±731.

Strauss A., Fagerhaugh S.Y., Suczek B. & Wiener C.L. (1985)

Social Organization of Medical Work. University of Chicago Press,

Chicago.

Thorne S.E. & Robinson C.A. (1989) Guarded alliance: Health care

relationships in chronic illness. Image: Journal of Nursing

Scholarship 21(3), 153±157.

Tilden V.P. & Gaylen R.D. (1987) Cost & con¯ict: the darker side

of social support. Western Journal of Nursing Research 9(1), 9±18.

Walster E., Walster G.W. & Berscheid E. (1978) Equity: Theory and

Research. Allyn and Bacon, Inc, Boston.


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Protecting strategies used by sufferers of catastrophic illnesses and injuries