ORIGINAL RESEARCH

The impact of neuropathic pain on relationships

S. Jose Closs, Victoria Staples, Innes Reid, Michael I. Bennett & Michelle Briggs

Accepted for publication 10 October 2008

Correspondence to S.J. Closs:

e-mail: s.j.closs@leeds.ac.uk

S. Jose Closs BSc PhD RN

Professor

Nursing Research, School of Healthcare,

University of Leeds, UK

V. Staples BSc MSc DHealth Psych

Senior Lecturer

Health Psychology, School of Social Sciences,

University of Derby, UK

I. Reid BSc MA RN

Critical Care Outreach Charge Nurse

Theatres, Anaesthetics and Critical Care,

Leeds Teaching Hospitals NHS Trust, UK

M.I. Bennett MBChB MD FRCP

Professor

Palliative Medicine, International

Observatory on End of Life Care, Institute for

Health Research, University of Lancaster, UK

M. Briggs MSc PhD RN

Senior Research Fellow

School of Healthcare, University of Leeds,

UK

CLOSS S.J . , STAPLES V. , REID I . , BENNETT M.I . & BRIGGS M. (2009)CLOSS S.J . , STAPLES V. , REID I . , BENNETT M.I . & BRIGGS M. (2009) The

impact of neuropathic pain on relationships. Journal of Advanced Nursing 65(2),

402–411

doi: 10.1111/j.1365-2648.2008.04892.x

AbstractTitle. The impact of neuropathic pain on relationships.

Aim. This paper is a report of a study exploring the impact of neuropathic pain on

family, social and working relationships among patients at a pain clinic serving a

large urban area.

Background. Neuropathic pain is a particularly distressing type of chronic pain

which is extremely difficult to manage successfully. It produces a range of

unpleasant symptoms and adversely affects patients’ quality of life, but little is

known about its personal impact.

Method. A descriptive and exploratory approach was used and 10 participants

participated in three focus groups in 2005. Because of the low response rate of 20%

from the initial sample, a second sample of 16 patients was invited to participate.

However, only one person responded and therefore it was not possible to convene

an additional group.

Findings. The unpleasant and bizarre nature of neuropathic pain underpinned much

of its impact in terms of respondents’ difficulties in maintaining a range of rela-

tionships. For closer relationships, key difficulties centred on the reduction in quality

and/or number of personal relationships. For more distant relationships and those

with professionals, frustration at the invisibility of their pain and their own failure

to communicate symptoms and its consequences were central.

Conclusion. More extensive work is needed to improve our understanding of how

neuropathic pain is experienced, how it affects close and more distant kinds of

relationships, and how healthcare professionals might best support people with

persistent neuropathic pain to maintain personal and social relationships, and to

communicate their pain effectively.

Keywords: communication, focus group, neuropathic pain, nursing, pain impact,

quality of life, relationships

Introduction

The impact of chronic pain on daily life is extensive, but most

research in this field has not differentiated between those who

have chronic nociceptive pain (in response to injury or

pathology) only and those who suffer from neuropathic pain

symptoms due to abnormal nerve function. The International

Association for the Study of Pain (IASP) defines neuropathic

402 � 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd

J A N JOURNAL OF ADVANCED NURSING

pain as ‘Pain initiated or caused by a primary lesion or

dysfunction in the nervous system… Peripheral neuropathic

pain occurs when the lesion or dysfunction affects the

peripheral nervous system. Pain initiated or caused by a

primary lesion or dysfunction in the nervous system…Peripheral neuropathic pain occurs when the lesion or

dysfunction affects the peripheral nervous system. Central

pain may be retained as the term when the lesion or

dysfunction affects the central nervous system.’ (IASP

2008). Persistent neuropathic pain is not uncommon, its

symptoms are frequently bizarre and distressing, and it is

notoriously refractory to treatment.

Most treatment is pharmacological, and little is known

about patients’ experiences of symptoms and how they affect

daily life. Improving our understanding of these issues might

provide a platform from which more effective interventions

and support could be developed and tested.

Background

Symptoms and prevalence of neuropathic pain

Chronic neuropathic pain has a wide range of unpleasant

symptoms, many of which are strange and unpredictable.

Neuropathic pain is typically reported as burning,

shooting, stabbing, random, sudden, or electrical. It is

associated with sensory changes such as dysaesthesias

(abnormal pain perception) or paraesthesias (abnormal

perception of a non-painful nature) and abnormal sensory

perception, such as allodynia or hyperalgesia (eg Mortimer

et al. 2002).

A recent survey of the general population in the United

Kingdom (UK) showed that of over 3000 patients, 48% had

chronic pain, of whom 8% had pain of predominantly

neuropathic origin. Those in the latter group suffered higher

pain intensity and higher levels of expressed need (Torrance

et al. 2006). Neuropathic pain is thought to be a particularly

distressing pain condition and is associated with a high

degree of suffering, not only because of the intensity of the

pain but also the long duration of the condition, as the pain

does not generally decline over time (Karlsten & Gordh

1997). Some elements of neuropathic pain are described as

constant, but it is more common for patients to describe

intermittent symptoms.

Impact of neuropathic pain symptoms on relationships

A large body of literature exists on the impact of chronic

pain in general on daily life (Gureje et al. 1998, Niv &

Kreitler 2001, Katz 2002). It can disrupt work, family and

social functioning and can lead to depression and with-

drawal from social activities (Breivik et al. 2006). Many

researchers who have explored the experience of living

with chronic pain have not differentiated between those

with predominantly nociceptive pain and those where

neuropathic symptoms dominated the experience (e.g.

Johansson et al. 1999).

Surveys of people with neuropathic pain suggest that the

majority experience severe discomfort which interferes with

general activity, work, sleep, mood and enjoyment of life (eg

Meyer-Rosberg et al. 2001, McDermott et al. 2006, Smith

et al. 2007). These people showed poorer physical and social

functioning and mental health than the general population.

The most bothersome symptoms were generally difficulty in

sleeping, lack of energy, difficulty in concentrating and

drowsiness, all of which might interfere with the ability to

integrate socially.

The expression of negative emotions such as frustration,

irritability and anger has been described in relation to the

impact on interpersonal relationships and increases the level

of stress within families (Henwood & Ellis 2004). Neuro-

pathic pain syndromes can affect job performance, work

absenteeism, reduced productivity and ultimately the ability

to maintain a work role, without which it is difficult to

maintain an ordinary life pattern (Liedberg & Henriksson

2002).

It is clear that chronic neuropathic pain can produce

many and various negative changes in sufferers. While the

broader population of those with chronic pain has received

some consideration, the more specific population of people

whose chronic pain has a neuropathic element has received

far less attention. The specific needs of such patients in

terms of psychological and social support are not known in

any detail.

The study

Aim

The aim of this sub-section of a wider study (Closs et al.

2007) reported in this paper was to explore the impact of

neuropathic pain on family, social and working relationships

among a sample of patients from a Pain Clinic serving a large

urban area.

Methodology

A descriptive and exploratory approach was used since the

purpose was to focus on the largely unexplored experience

and reported impact of neuropathic pain symptoms. Focus

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� 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd 403

groups were selected as the method for generating data,

because these are particularly useful in identifying both

diverse individual accounts and shared experiences (Dawson

et al. 1993). Discussion with others may facilitate more

in-depth and meaningful discussions than one-to-one inter-

views with only a researcher present.

Since we anticipated that participants might be willing to

discuss intimate or embarrassing issues, the size of focus

groups was kept smaller than normal (typical groups include

5–12 participants). Generally the more sensitive the

topic under discussion, the smaller the group needs to be

(Goodman & Evans 2006, p. 357).

Participants

Participants for the focus groups were recruited from an

existing database of patients with chronic neuropathic pain.

They had previously been screened with the Leeds Assess-

ment of Neuropathic Symptoms and Signs (LANSS) pain

scale (Bennett 2001). We had no direct access to the database,

and patients were initially contacted on our behalf by a

specialist nurse. Exact diagnoses were unavailable due to

adherence to the Data Protection Act. Data collection took

place over six months in 2005.

Of the 99 patients on the database, 49 lived locally and

were considered by the specialist nurse to be well enough to

be approached. They were sent an information sheet

explaining the study, a consent form, contact details and a

reply-paid envelope. Ten participants took part in three focus

groups. The first comprised two men and two women; the

second two men and one woman; and the third three women.

Ages ranged from 24–60 years.

Due to the low response rate of 20% from the initial

sample, a second sample of 16 patients was identified from a

town further afield and invited to participate. Only one

person responded and therefore it was not possible to

convene an additional group.

Data collection

A comprehensive review of the current literature on

the impact of persistent neuropathic pain was undertaken as

a basis for developing the focus group schedule. One

hundred and ninety-seven abstracts were identified from

the initial search, in 22 of which a qualitative method

was used. The focus group schedule was developed to

facilitate discussion around the main domains related to

the impact of living with neuropathic pain symptoms,

as identified in the literature. We identified eight

such topics, of which three - impact on family life, impact

on social life and impact on working life - are explored

here.

The focus groups were undertaken at a locality convenient

for participants and audio-taped with their consent. Each

discussion lasted for 1–1Æ5 hours. The three questions posed

relevant to this paper were: ‘Thinking now about these

symptoms, what influence do you feel they have on your

family life’; ‘Do these symptoms influence your social life in

the same ways they influence family life, or do they have a

different influence on your social life?’ and ‘Do or did these

symptoms have any influence on your working life and if so,

in what ways?’. Between two and six prompts were planned

for each section. VS acted as moderator and IR as facilitator.

Ethical considerations

The study was approved by the appropriate ethics committee.

Participants were informed about the study and gave consent

as described above. At the start of each focus group all

participants agreed that the content of the discussion would

remain confidential among themselves.

Data analysis and validity

The audio-taped discussions were transcribed verbatim and

organised using QSR NVIVO version 2 (QSR NVIVO

International Pty Ltd, Victoria, Australia). Data were analy-

sed using the straightforward approach of qualitative descrip-

tion. This method was selected because it allows researchers

to stay close to the data, which were from a smaller than

anticipated sample. It is less interpretive than approaches such

as grounded theory and phenomenology, not requiring

‘conceptual or other highly abstract renderings of data’

(Sandelowski 2000, p. 335). This analysis was undertaken

by the focus group moderator VS) and independently by

another researcher (IR). Open coding was used within and

across the groups to identify common or contrasting themes,

which were then labelled and assigned codes.

Agreement was high between the two sets of codes and

categories derived. The few disagreements were resolved

through discussion between the two coders and, where these

were unresolved, consensus was sought through discussion

with the wider research team. An overall thematic framework

was developed and then reviewed by two independent pain

nurse specialists with experience of working with patients’

with neuropathic pain to establish its face validity.

The findings are presented as descriptive summaries and

interpretations of key emergent themes, illustrated by data

extracts from the transcripts. Quotes have been anonymised

to maintain participant confidentiality. Each quote is

S.J. Closs et al.

404 � 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd

identified only by the focus group number, participant

number and gender, e.g. FG1, P2, female.

Results

In each of the groups, participants developed considerable

rapport with one another, which appeared to have two

effects. First, it allowed them to feel that they were not alone

and that they ‘were not going mad’ trying to cope with their

distressing symptoms on their own. Second, by disclosing

personal information, they encouraged one another to discuss

topics that they had felt unable to divulge in any forum

previously. Once one person had been brave enough to reveal

sensitive information, others felt that they had ‘permission’ to

do the same. All took a full part in their focus groups.

The discussions produced wide-ranging content, including

data on the nature of the pain experienced and how

participants managed this (Closs et al. 2007). The key

aspects of the pain experience were its very unpleasant and

unpredictable nature, together with the difficulty of describ-

ing its often bizarre characteristics to other people (Closs

et al. 2006). It appeared that the relentless unpleasantness of

neuropathic pain had a profound effect on all kinds of

relationship.

Participants described some of the difficulties they had

experienced with intimate relationships and the strains placed

on relationships within their families. They also described

difficulties in maintaining, and the loss of, relationships with

friends, as well as frustration in their dealings with uncom-

prehending healthcare professionals, disability services, ben-

efits agencies and employment services, which was common.

Impact of pain on spouses/partners

Several participants reported that the relationships that they

were in when they developed neuropathic pain had broken

down because of the impact of living with the pain and their

symptoms:

I and my husband split up and we’d been married 36 years. We split

up because my husband couldn’t stand it any more. [FG1, P2, female]

Those who were still in their relationships or who had

established new ones had difficulties related to physical

intimacy:

You know, if you’re just sort of laid in bed and he puts his hand on

my hip to give me a cuddle or anything I say, ‘Don’t touch me’

because it’s just, it’s just I can’t even put my own hand there. I

certainly don’t want anybody else’s big hand on me as it were…

‘Don’t touch me, but you’ve still got to love me’ [laugh] – strange

isn’t it?... And half of the time you’re in so much pain you can’t be

bothered anyway [FG3, P1, female]

Others described how new relationships had failed because of

the impact of the pain, and for some patients it was

impossible to establish new relationships, again because of

the impact of living with neuropathic pain:

When this pain comes bad it has spoilt, spoilt relationships because

it’s really hard for somebody to understand how it debilitates, how

you become miserable. [FG2, P1, female]

Impact on relationships with family

For the men, the loss of physical capacity was particularly

difficult to accept. They felt unable to perform traditional

male tasks and fulfil their roles as sons, partners and fathers.

These included heavier household chores such as gardening,

being able to protect their loved ones and being able to

perform sexually:

Yes, it’s a man thing - you’ve lost all that what men stand for, if you

know what I mean/If my daughter gets in to trouble, I’m not in a

position now to go and sort it out. [FG1, P3, male]

Men found it particularly difficult to accept help from people

whom they felt they should be supporting:

My parents have been there for me all my life and they’re at an age

now where they should be able to take it easy and rely on their son

occasionally to help them out with stuff, and I can’t do it for them…

You feel guilty. [FG1, P3, male]

Women also described their inability to perform their usual

roles and participate in normal family activities. The impact

on children was particularly noted:

I’m a single mum. It affected them [the children] because who wants

to come home with your mum tucked up in bed not well? [FG2, P1,

female]

Participants recognised their negative emotions and behav-

iour, expressed concern that they might react physically

aggressively and worried that family members would not

tolerate their behaviour indefinitely:

I do flare up, do get so frustrated. I don’t throw things, but I do bang

things. If you understand me, the table like that… I’ve never been

physically violent, thank goodness, but you never know how long

they’re going to stand it - so you’re living in the fear. [FG1, P4, male]

Impact on relationships with friends

Participants described how their friends found it difficult to

‘see’ the problems they were experiencing:

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� 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd 405

You find that people don’t believe you a lot of the time. They can’t

see it, so they don’t think there’s anything the matter with you. [FG1,

P3, male]

Despite the loss of a many relationships, participants reported

receiving a great deal of support from their families and

friends, even though they felt that most people did not

understand what they were going through.

The nature of the disability resulting from neuropathic pain

is further complicated by the invisibility of pain. The com-

plexity of the sensory impairments and bizarre feelings added

to lack of understanding of what it took to live their lives.

Having to ask for assistance was particularly frustrating:

And when I’ve got to go shopping, I got to have someone to help me

lift, I’ve got to ask … to have someone to lift, and they look at you as

if to say, ‘Are you kidding me’... I just need the help there and then

and it gets so frustrating. [FG1, P1, female]

Everyone in the focus groups reported that their social lives

had been affected to some extent by the pain. This was often

seen as the starting point for the loss of social relationships:

Yeah, because they ask you out and you’re in agony, and nine times

out of ten you have to turn round and say, ‘I’m sorry, I can’t make it.’

So in the end they think, ‘What’s the point?’ [FG1, P3, male]

Preoccupied with their own experiences, participants

reported not having the emotional energy to deal with other

people’s concerns, and expressed how they had become

resentful towards others who relied on them. Paradoxically,

they were also able to identify positive changes within

themselves and described how they had become more patient

with others, more tolerant and less concerned about issues

that would previously have been a cause for worry:

I’ve got a bit more patience where people are concerned. I listen more

intently … and therefore I’ve got more patience with people. [FG1,

P1, female]

Impact of pain on relationships with professionals

Most participants were unable to work, and so focused on

their dealings with healthcare professionals and staff in

statutory agencies. Lack of understanding by these profes-

sionals, together with not being believed, was a major

problem for many:

It’s just people’s [doctors’] off the cuff ‘Just get on with it’… You

wouldn’t say that if I came in and I had a bloody leg missing or

something … You wouldn’t react like that if I came in and I had

multiple sclerosis or if I had cancer. You don’t say to them, ‘Just

bloody get on with it’ and leave it... so put up with it, there’s no

choice. It isn’t that bloody easy - if it were that easy I’d do it, I’d grit

my teeth and I’d bloody get on with it. [FG2, P3, male]

This lack of professional understanding had negative

practical consequences for some. There was a perceived lack

of understanding from general practitioners (GPs) or family

physicians of the severity and consequences of pain. The

inability to communicate the nature of pain successfully to

these people might have led to a cut in social security benefits

for one participant:

He hasn’t got your medical records … then he writes a report and

sends it to the benefits people. And whether you get your benefits or

not is purely and simply on what that GP has said after ten minutes.

[FG1, P3, male]

Continual re-assessment by seemingly ill-informed staff at

disability services, benefits agencies and employment services

was described as very stressful. In one case this lack

of understanding was reported to produce inconsistency

between judgements by professionals’, who were then

perceived as untrustworthy:

I find that the different people you see, you get so many different

opinions. … you’re swapping about and for me, now, I got finished in

my job from Dr A in Derby [who] did a medical [for my job] and then

… they said, ‘You can’t work anymore.…. Then Dr B at Leeds did the

medical for my pension and said, ‘Oh you should go to work’. So I

lost my job and then I didn’t get my pension. So I ended up with

nothing, and all on the fact that two people in the same bloody jobs

got different opinions. [FG2, P3, male]

Any suggestion that the pain was psychological fed into

participants’ difficulties in understanding their experiences.

Some of the bizarre features of their neuropathic pain left

them questioning its reality and whether they were somehow

diminished in their capacity to cope with it. Not wanting to

be labelled as mentally ill was also expressed in relation to

any suggestion that their pain was psychological in nature:

They try and say there’s nothing, so I thought it must be psycho-

logical and that was the biggest insult for me. [FG2, P1, female]

Discussion

Study limitations

The findings of this exploratory study are limited by the

smaller than anticipated sample size, since we cannot be

certain that data saturation had been reached. Additional

work and more sophisticated analysis would therefore be

valuable, although our findings were supported by the

S.J. Closs et al.

406 � 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd

existing literature. It would be necessary to confirm or refute

the validity of these findings before considering how best to

intervene to help people with neuropathic pain.

Discussion of findings

Many of the issues identified by this sample of people with

neuropathic pain were similar to those in the wider popula-

tion of chronic pain sufferers (e.g. Breivik et al. 2006). Our

findings showed clearly that they had experienced many

distressing problems due to the impact of neuropathic pain on

all sorts of relationships, but they reported no formal access

to much-needed psychological or social support to help them

manage these problems (Closs et al. 2007).

Our findings mirror to a great extent those of Sofaer-

Bennett et al. (2007), who explored the social consequences

of neuropathic pain with older people. They found limita-

tions (related to physical constraints, reduced activities and

family contacts, sadness and loss) and social isolation

(waning friendships, strained personal and intimate relation-

ships). We found many similar themes, in that neuropathic

pain appeared to produce four key overlapping areas of

negative impact on participants’ relationships. These were

strained intimate relationships, loss of family roles, social

withdrawal and being believed/understood.

Loss of family roles

A common issue resulting from chronic neuropathic pain was

the inability to maintain roles in relation to family members,

and the breakdown of marriages and similar relationships

was common. This is an under-researched area for those with

neuropathic pain, although the role of spousal responses to

chronic pain has been studied in some detail. It has been

shown that both solicitous (engaged and caring) and punish-

ing responses from significant others can be negatively

associated with acceptance of chronic pain (McCracken

2005). Conversely, the notion of ‘carer burnout’ may apply to

spouses in this group, who may well have suffered physical

and mental strain as a result of providing long-term support.

It has been estimated that 20–50% of spouses of those with

chronic pain exhibit significant depressive symptoms

(Shwartz & Slater 1991).

Loss of feelings of masculinity or femininity was a central

aspect of the loss of traditional family roles, and was something

which participants had not felt able to discuss in other forums.

This has received little attention in the pain literature. Those

who were still in relationships with spouses or partners

described difficulties with physical intimacy, increasing levels

of dependency and not being able to reciprocate support.

The inability to maintain other roles in the family also

caused great distress. Fathers who were unable to protect

their daughters, sons who were unable to support their

elderly parents and mothers who could not play with their

children found this highly problematic. The inability to

participate in normal family activities was recognised as

having a major impact on children in particular, and

participants described how they often felt like a burden on

others, in keeping with the findings of Bakitas (2007). This

has also been shown to be an issue for older people with

neuropathic pain, who lose contact with their grandchildren,

as well as suffering strained personal relationships with

spouses and losing friendships (Sofaer-Bennett et al. 2007).

It appears that there may be scope for providing additional

support for people with neuropathic pain patients and their

families. Spouses may need as much help as sufferes to cope

with the physical and psychological demands of living with

such a distressing condition. It may be that participation in

pain management programmes would benefit them.

Social withdrawal

Solicitousness is conceptually related to social support, in

part referring to the provision of various kinds of assistance.

This may come from any number of people within the

relevant social network, including friends, neighbours and

work colleagues. Social networks are emerging as an impor-

tant factor in mitigating the interference of pain with daily

activities (Peat et al. 2004). For most people, any attempt to

maintain a normal life includes the maintenance of social

networks, but this becomes increasingly difficult with the

establishment of neuropathic pain symptoms.

Several participants in the study reported difficulties with

planning ahead because of the unpredictable nature of the

pain. They sought to identify possible triggers for their pain,

and expressed frustration at its unpredictability. This sup-

ports earlier work describing how people became despondent

at not being able to identify the cause of their problem, and

felt depressed by their failed attempts to relieve symptoms

over prolonged periods of time (Hunt & Bogg 2000).

Participants reported that family activities were often dis-

rupted because of their symptoms, but they also described

how they had become more spontaneous, engaging in family

activities as and when they felt able. Advance knowledge, in

terms of the environment or facilities, was identified as an

important aid in identifying suitable locations for activities,

but not in relation to daily fluctuations in the pain experience.

In some cases triggers were identified, such as physical,

emotional or environmental factors, including increased

activity, physical contact, stress and climatic change. Many

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� 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd 407

of these occurred in social situations, potentially making

patients choose to avoid socialising.

Being believed/understood

The invisibility of the pain increased the need for sufferers to

be able to demonstrate its presence verbally. The negative

impact of the failure to communicate clearly and successfully

about pain occurred in relationships with family and

friends as well as with government agencies and healthcare

professionals.

Unfortunately, the diverse and peculiar symptoms of

neuropathic pain are difficult to understand and describe,

even for those with an excellent vocabulary and verbal

skills. Metaphors were often used by participants (eg like a

balloon that’s under half pressure) and this has been

observed previously (Schaefer 1995, Soderberg & Norberg

1995).

Frustration was expressed at the inability of healthcare

professionals, particularly GPs and family physicians, to

understand the pain. This had the potential to result in poor

diagnosis and treatment. Loeser (1991) proposed that a key

difficulty for physicians is the differentiation between impair-

ment and disability. If impairment is defined as any loss or

abnormality of psychological, physiological or anatomic

structure or function, and disability is defined as any

restriction or lack (resulting from impairment) of ability to

perform an activity in the manner or within the range

considered normal for a human being, the problem becomes

clearer.

A person with chronic neuropathic pain may have no

discernable impairment underlying their disability due to the

pain and, while doctors are trained to identify impairment,

for the most part it is only specialists in rehabilitation who

have adequate understanding of disability. It has been

suggested that when a chronic pain sufferer is asked to

NEGATIVE IMPACTS OF

NEUROPATHIC PAIN:

Type of relationship

ProfessionalsFriendsFamilySpouse/partner

Intimate relationships

unsustainable due to

pain

Failure of existing

marriage or partnership

Failure to establish new

relationships

Loss of family roles (reduced

ability to act as father, mother,

son etc)

guilt

Feelings of inadequacy and

Frustration and fear of

expressing anger to family

members

Withdrawal from social

activities

Frustration at invisibility of

symptoms and inability of

friends to understand

Inability to plan activities due

to unpredictability of pain

Change in attitude to friends

(more tolerant/resentful)

Frustration at doctors’ apparent

lack of understanding of their

situation

Loss of trust where no

consistency between doctors’

judgements

Frustration at dealing with

statutory agencies (benefits etc)

who did not understand/believe

them

Fear of being labelled mentally ill

Figure 1 The impact of neuropathic pain on relationships.

S.J. Closs et al.

408 � 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd

demonstrate their physical capacity, it is not an objective

diagnostic procedure which ensues, but ‘an interesting social

interaction, based on the beliefs, knowledge, affect and

physical characteristics of the patient’ (Loeser 1991, p218). It

is hardly surprising, then, that different doctors may come to

different conclusions about the same patient. Benefits agen-

cies may have no choice but to rely on the diagnoses of GPs

who lack expert knowledge. The ramifications of this go

beyond treatment to the employment and economic aspects

of sufferers’ lives. The extent of GPs’ need for information is

unknown, they need to have the appropriate knowledge if

patients are to get the support they need.

Two key negative impacts on relationships

Although our participants varied in terms of condition and

demographic factors, some commonalities did emerge.

Figure 1 summarises the reported impact of neuropathic

pain on the range of relationships. If relationships are

considered as a continuum, ranging from the closest to the

most distant, two key factors may be considered to have had

graduated impacts, starting at opposite ends of this contin-

uum (Figure 2).

At the more intimate end of the relationship spectrum,

profound reductions in the quality of relationships with

partners and families were seen, together with a reduction in

the number of personal relationships which participants

could sustain. At the opposite end, where relationships were

more formal, the main negative impact appeared to be

frustration at failure to communicate the nature of their

condition successfully. This did not appear to be a major

difficulty within intimate relationships, although the fear of

expressing anger due to frustration was a concern. Difficulty

in communicating pain symptoms produced varying degrees

of social withdrawal from friendships and was a major

problem when dealing with healthcare professionals and staff

at statutory agencies. The consequences in terms of being

misunderstood by the latter were profound in terms of the

potential for losing employment and other benefits which

might otherwise have supported them in maintaining the

normal aspects of their lives.

Conclusion

Neuropathic pain was reported to produce negative impacts

on a range of relationships, in terms of loss of family roles,

social withdrawal and frustration about being understood

and believed by family, friends and professionals. Many of

these issues are not new in the US and European pain

literature and suggest that little progress has been made in

supporting those with disabling chronic pain to maintain as

normal a life as possible.

However, it may be that focusing on two key areas of

concern to these patients, that is preventing relationship

breakdown or loss, and effectively communicating about

neuropathic pain, would have the greatest potential for

Continuum of ‘closeness’ of relationships:

Spouse/partner Family Friends Professionals

2. Frustration at invisibility of

pain and failure to communicate

symptoms – and the

consequences

1. Reduction in quality

and/or number of

personal relationships

Figure 2 Two key areas of negative impact

on the continuum of relationships. The

graduated shading in the triangular areas

indicates the suggested strength of the two

types of negative impacts on different types

of relationship; the darker the shading, the

greater the impact.

JAN: ORIGINAL RESEARCH Neuropathic pain and relationships

� 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd 409

improving their quality of life. These issues would need to

be pursued in a range of international settings since family

and social relationships, as well as attitudes and beliefs

about pain, vary considerably according to ethnicity and

faith. Furthermore, culturally-acceptable ways of expressing

pain also vary a great deal, and so the mode and

significance of pain communications require exploration

in different contexts. Different kinds of support are likely

to be needed in different cultures. Use of cognitive

behavioural therapies with patients and/or spouses and

perhaps other family members might help to rebuild

damaged relationships and help to normalise family func-

tioning. Neuropathic pain sufferers could be trained to

manage interactions with family, friends and professionals

who appear not to understand or believe their symptoms.

This might involve developing their communication skills

and/or support in adjusting more positively to the notion

that they may not be understood.

Larger studies are needed to explore in more depth the

personal and interpersonal impacts of neuropathic pain on

different types of relationship.

Acknowledgements

We would like to thank the British Pain Society and Pfizer,

who funded this research; all the participants who gave their

valuable time to participate in the focus groups; Helen

Radford and the medical and nursing staff who supported the

study; members of the advisory group for their help

throughout the project, in particular Helen Poole and Kath

Marczewski; and we would like to thank Ruth Allcroft for

her support with administration.

Funding

This research received no specific grant from any funding

agency in the public, commercial, or not-for-profit sectors.

Author contributions

SJC, MIB & MB were responsible for the study conception

and design. VS & IR performed the data collection. SJC, VS

& IR performed the data analysis. SJC was responsible for

the drafting of the manuscript. SJC, VS, IR, MIB & MB made

critical revisions to the paper for important intellectual

content. SJC, MIB & MB obtained funding. SJC, MIB & MB

supervised the study.

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