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Chronic pain, relationships and illness self-construct
Pain. 50 ( 19921263-271 © 1992 Elsevier Science Publishers B.V. All rights reserved 0304-3959/92/$05.00
263
PAIN 02089
Chronic pain, relationships and illness self-construct Frances R. James and Robert G. Large Department of Psychiatry and Behaciourai Science, School of Medicine, Unirersity of Auckland, Auckland (New Zealand) and Pain Clinic, Auckland Hospital, Auckland (New Zealand) (Received 7 August 1991, revision received 24 February 1992, accepted 27 February 1992)
Summary A standardised illness self-construct repertory grid was used to evaluate relationships between people with chronic pain and the person to whom they felt closest. The 'Closest Other' was used to evaluate a wider range of relationships than generally included in research on 'spouse' reactions to chronic pain. The illness self-construct repertory grid indicated that closest others tended to place illness more centrally in the life of the individual with pain than did the person who had pain. The repertory grid provided information about the relationship which was not available from responses to open-ended questions. The statistical and theoretical assumptions of repertory grid technique make it ideal for intensive study of small groups or individuals best suited to clinical settings and not for screening large numbers of subjects.
Key words: Pain; Spouse; Family; Repertory grids
Introduction This paper reports the effects of chronic pain on individuals with pain and their 'Closest Other' (CO). Most of the work on the effects of pain upon others has focussed on the spouse or family. The CO was used in this project because not all people with pain have a spouse or family, and they may not be the people to whom the subject turns for support. Research on the interaction of pain and marital satisfaction, the effects of pain upon the spouse, and the effects of the spouse's behaviour upon pain has been reviewed by Payne and Norfleet (19861, Campbell (1987), and Turk et al. (1987). A number of families coped well with chronic illness and some reported that they were closer because of the illness (Turk et al. 1987). Support from the spouse has been shown to be important in reducing depression in people with chronic
Correspondence to: Dr. Bob Large, Department of Psychiatry and Behavioural Science, School of Medicine, University of Auckland, Private Bag 92019, Auckland, New Zealand. Tel.: (00649) 37-37-989; FAX: (00649) 37-37-493.
pain (Kerns and Turk 1984), adding to quality of life (Burckhardt 1985)and increasing benefit from treatment (Jamison and Virts 1990). Block and Boyer (19841 found that spouses of people with chronic pain did not, in general, have elevated psychological distress. However, psychological distress was higher if the quality of the marriage was poor, if the spouses were pessimistic about prognosis, and if they saw the patient as disabled and distressed. Wives of chronically ill individuals have been found to be more emotionally affected and maritally dissatisfied than husbands (Hafstrom and Schram 19841. Uncertainty about pain, helplessness, and disruption of patterns of family living were central to the distress experienced by spouses (Rowat and Knafl 1985). Spouses who reported being highly distressed were partners of individuals with longer pain durations and more chance of being unemployed. Consequently more demands were made on them for helping in the care of the individual (Gii et al. 19871. Distressed spouses produced higher ratings of their spouses pain while lowdistress spouses underestimated pain and were not aware of factors which mediated pain. Spouses in a high-distress group were more likely to have assumed a
2~4 "protector" role while t~ese who had low distress were m o r e likely to "avoid' the issue of pain. High a g r e e m e n t b e t w e e n patient a n d spouse in the evaluation of severity a n d impact of pain was related to p o o r t r e a t m e n t o u t c o m e (Swanson a n d M a r u t a 1980). Initial incongruity b e t w e e n patients a n d significant others" ratings of family relationships was associated with positive change in pain stau~s and d e p r e s s i o n symptoms (Beutler et al. 1988). Kelly (1955), in articulating his ' P e r s o n a l Construct Theory', hypothesised that each individual develops an u n d e r s t a n d i n g of the world which is unique. This system for u n d e r s t a n d i n g the world will d e t e r m i n e the person's response to situations such as chronic illness. People who have not experienced chronic illness before build their u n d e r s t a n d i n g of illness a r o u n d previous experience of acute illness or g e n e r a l i s e d events. The hospital system and the family f u r t h e r influence their interpretation of events. The individual's ability to adjust to illness will be partially d e t e r m i n e d by the distance between illness self-construct a n d previous construction of self (Viney 1985). For acute illness, constructs of helplessness receive m o r e validation than those of competence. With chronic illness, these constructs may need to be revised so that effective rehabilitation can take place (Viney 1985). T h e e x p e r i e n c e of illness may involve a tightening of construing to match the limitations of the experienced world. Button (1985), in work with anorexic patients, found that a return to normal weight left subjects with a much less clearly defined view of themselves than when they were thin. O n e - d i m e n s i o n a l construing, w h e r e all constructs were s u b s u m e d under a p r i m a r y superordinatc construct, was predictive of a negative outcome from treatment. In general, the subjects w h o improved had defined themselves less extremely initially (Button 1985). The Illness Self-Construct R e p e r t o r y G r i d ( I S C R G ) was developed to investigate personal r e s p o n s e s to chronic pain or illness ( L a r g e 1985a). T h e I S C R G has been used in the evaluation of a Pain M a n a g e m e n t P r o g r a m m e (Large 1985b) and to m o n i t o r p r o g r e s s and m a i n t e n a n c e of effect in a self-hypnosis training prog r a m m e for people with chronic pain ( L a r g e a n d J a m e s 1988). In this study, the C O ' s description of the world of the individual with pain using the I S C R G was collected in conjunction with their c o m m e n t s on the quality of their relationship. We were i n t e r e s t e d in the differential utility a n d explanatory p o w e r of the ISC R G vis-a-vie the o p e n - e n d e d qaestion~mire.
Method Subjects for this study were ~,~,tpatients at Auckland Hospital Pain Clinic (AHPC). AHPC is a tertiary referral service. People
referred to the clinic have seen at least one specialist, they have had pain for an average duration of 5 years, and they tend to be severely disabled by the pain. Each individual was asked to name the person to whom they felt closest or by whom they were most understood. They were excluded from the project if they did not name anyone or were not happy to have this person invited to participate. Few people were not approi:riate on these grounds. Pain subjects were shown both versions of the questionnaire to emphasise that no private information was being asked. The CO was given a sealed envelope which included a subject information sheet, consent form, and questionnaires. It was strongly suggested that each member of the dyad should complete the forms separately and need not show or discuss their answers with their co-respondent. Both the individual attending the Pain Clinic and the CO were asked to describe important changes in their relationship since the pain began: which changes had been good and which had been a problem. They were asked whether they felt closer or further apart, whether it was easier or more difficult to communicate, and to give any other information which they felt was important. Answers to the questionnaires have been presented verbatim in conjunction with discussion of the ISCRG responses. Each respondent completed the ISCRG (Large 1985a). The ISCRG used the elements 'As ! am', • As ! would like to be', •As the person closest to me sees me', "As my doctor sees me', "Like a hypochondriac', and ~Like a physically ill person'. The constructs on which these elements were rated included seriousness of illness, worry about illness, expression of emotions, the part emotions play in causing or maintaining my pain, depression, anxiety, whether they have problems other than pain, and irritability. The grid is presented with the element labels at the top of each page and the 8 constructs rated on visual analogue scales (VAS) down the page (Large 1985a). Repertory grids were analysed using the INGRID package (Slater 1976, 1985). The CO was asked to complete the grid 'As they imagined the person who has pain would'. When interpreting the grid pairs, it is important to remember that the elements did not correspond exactly. There was no CO element which corresponded with the pain subject's element 'As I am'. The pain subject's 'As the person closest to me sccs me' would be expected to overlap with the CO',,, 'As ! am'. The distance between each subject's 'As the person closest to me sees me' and 'As I am' indicated the level of understanding which each of the respondents believed the CO had of the pain subject. Nineteen subjects with pain completed the forms, and 15 COs completed and returneff th:rir section. Mean age of the subjects with pain was 45.5 years (S.D. = 15.1). Mean age of the COs was 42.5 years (S.D. = 16.9), All subjects were caucasian. Women were overrepresented in the pain sample (X 2 (1, N=34)=5.97, P<0.05). The CO was a spouse in 8 cases or a child (2), friend/lover (2), friend (1), ex-boyfriend (1), or sister (1) in other cases. Twelve of the subjects with chronic pain had been forced to either change their job, reduce their work hours, or give up work because of the pain. Only ! CO had changed her occupation and this was to return to work as the household was experiencing financial difficulty.
The interpretation of grids The INGRID package calculates 3 principal components from the data .,~atrix. The first 2 components are plotted as the horizontal and vertical axes of the grid. Constructs and elements are plotted in relationship to these component axes. If a construct is close to horizontal it loads more heavily on the first component; if it is midway between the axes it loads equally on both components. Elements are distributed as they are rated within the total construct space. To discover how an individual rated particular elements and constructs, the 2 construct poles can be joined though the axis of the
265 grid; perpendicular lines drawn from the construct diameter to the elements studied will indicate the relative positions of any elements on that construct. The poles marked on the grids displayed are the distress poles of the constructs.
GRID 1. PAIN SUBJECT 1, ISCRG EXPRESSFEELINGS
Results
~ EMO11ONSIMPOR[ANT
~ FAINSERIOUS
/
"
General impressions from the ISCRG
i
There were general differences apparent when comparing patient's and CO's grids. COs were more likely to define Physical Illness as central to the subject and placed themselves (as the CO) and the Doctor in positions indicating that they understood the pain subject well. The people with pain were less likely to place illness centrally and did not feel understood by either the CO or Doctor.
....
IDEALo DOCTORot ] POC. . . . . . . t OTHERSo° . . . . . . . . . . . . . .
\~
\ ~ - - DEPRESSED PHYSICALLYILL ~ - --- OIHER PROBLEMS • - i ~"" WORRY'LtNESS
/
SELFo
//
' , ,~
-""--""-
I
~J*'" "
"'" \ "'" IRRITABLF ANXIOUS
Specific examples of ISCRG and Questionnaire responses The responses from 5 of 15 subject pairs who completed both sets of forms are included. All the responses were interesting; these ones have been selected to show the variety of responses obtained using this technique. The theoretical basis of personal construct theory and the sophistication of the analysis techniques available make repertory grids an ideal vehicle for the discussion of individuals. Each grid is interpreted and discussed separately in the spirit of this idiographic enquiry. Subject Pair One. Subject One was aged 60. She had a'frozen' shoulder which had been present for 2 years. She was working full time. Her husband completed the CO forms (Fig. 1). In grid 1, the individual with pain has indicated a belief that her CO saw her as a Hypochondriac. The placement of the Self suggested that she was less expressive of her feelings, more anxious and irritable, and had less of an emotional component to her pain tban she believed her CO saw. Her Ideal, close to the Doctor's perception, was more expressive of emotion and less anxious and irritable. The Physically Ill Person was at the extreme of this person's constructs. She did not perceive herself as being like a Physically Ill Person. In contrast, the CO (grid 2) felt that he had quite a good understanding of the person with pain in that the CO was close to the Self. He perceived her as seriously ill, with a strong emotional component to the pain, but not irritable, depressed, or anxious. He believed that the Doctor had an idealised image of the patient as someone who was not worried about pain and not expressive of feelings. The individual with pain was neither described as a Physically I11 Person nor a Hypochondriac. In this dyad the CO felt he had a good understanding of his spouse. In contrast, she believed her CO
GRID 2. CLOSEST OTHER 1, ISCRG
// ANX OUS.
\
//'
°%:L?/
.... QIDEAL °DOCTOR
OIHER PROBLEMsEI
eHYPOCHONDRIAC SELF
EXPRESSFEELINGS\ WORRY ILLNESS\
\
1
/
PAINSERIOUS-"--- _.---j'lk.~. . . . . . . . . . . F
EMOTIONSIMPORTANT
Fig. 1. ISCRGs from Subject Pair One. Discussion of the interpretation of grids is included at the end of the Method section. The distress poles of each construct are labelled on each grid. The pain subject's grid (grid 1) indicated that she saw herself as isolated from others, her CO saw her as a Hypochondriac, and her Doctor had an idealised image. She did not define herself as physically ill. The CO (grid 2) agreed that the Doctor had an idealised image, he also did not see her as physically ill but he mistakenly believed that he had a good understanding of her.
identified her as a Hypochondriac. The CO underestimated the anxiety and depression felt, as his wife was less expressive of emotion than he realised. The following responses are quoted from their questionn~i:~';.
Person with pain Sometimes dressing, unable to reach around so find it a problem to ask for help as I feel a nuisance and he gets annoyed. Yes I know him well. We communicate well. Only not with my pain. I cover it up.
2~,
I do not like to express my feelings, or extent of pain, so do not share it with anyone. Suffer in silence, so not even my husband knows how bad the pain is, so life has not altered. We are still very happy and close, but I feel a loner and often wish I was able to share the pain and not bottle it up. Person to whom size feels closest There is no difference as we have always communicated well. Feel closer as person with pain needs more attention and comfort. We are closer so talk better. My wife never complains so 1 do not know if she is in pain or not. I can tell because she becomes very quiet. In summary, there were misunderstandings in this relationship related to the pain. From the comments i.t was clear that both subjects were aware of not talking about the pain. The subject with pain believed that her CO saw her as a hypochondriac. This was not the case. Subject Pair Two. Subject Two was a 52-year-old woman with pain which had progressively affected her anal, rectal, ar, d urethral regions. The pain had been present for 2.5 years. Her sister was her CO (Fig. 2). Subject Pair Two both associated Self, Other, and Doctor. However, construct positions gave quite differcnt meanings to the grids. The individual with pain (grid 3) portrayed the Self element as not depressed, anxious, irritable, worried about pain or other problems, with no emotional component to pain, and not far from her Ideal. Her CO (grid 4) dcscribcd a pattern of Self, Other, and Doctor who wcrc worried about pain, seriously ill, had an emotional component to the pain, but no other problems. The CO placed the Self triad close to the Physically II1 Person while the individual with pain placed the triad close to the Ideal. This was an important difference in perspective. The individual with pain was indicating that things were not too bad. However, her sister labelled her as a Physically III Person and suggested her illness was serious. Both subjects thought that the CO had a reasonable understanding of the individual with pain. This belief may make it difficult for any improvement to occur. Questionnaire responses from this dyad were the following.
Person with pain Since I have discussed my problems and involved her I have had more understanding. I think she no longer sees me as a fit, all-capable person, with unending vitality and resources. We go walking more. I have confided or included my sister more in what is happening to me. I have had to alter my planning of social and recreational activities because I can't sit for long without
GRID 3. PAIN SUBJECT 2, ISCRG _ PAINSERIOUS ~
EMOTIONSIMPORTANT -,, \\
\
PHYStCALLYILL
// ~.
SELF° OTHERSo IDEAL• DOE;TORe
t ,
/ OTHERPROBLEMS / ANXIOUS IRRITABLE tJ ~ DEPRESSED / W O R R Y ILLNESS . |
~
'\
HYI:~HONDRIAC \
\
/ EXPRESSFEELINGS /-
.,
j
l
j
GRID 4. CLOSEST OTHER 2, ISCRG
/.
IRRITABLEj " ANXIOUS / / DEPRE5~;ED /
/
//
' ~ H E R PROBLEMS
H~fPOCHON~qlAC •
...................
JEyF.__ 4 Or ttEIK~ •
ODOCTOR IDEALo
t
O~IYfllC.ALtV ILLO \
,/
'\ /
FMOtlONSIMPORTANT"~,. PAiNSERIOUS~'~ WORRYILLNESS
~"~-.~
_.
_~1//"
.dr.'
EXPRESSFEELINQS
Fig. 2, ISCRGs from Subject Pair Two. The pain subject (grid 3) indicated that all was well. that she felt wlderstood by her CO and was not ill. However. the CO (grid 4) suggested that illness was more important and believed that the pain subject was further from her Ideal.
the pain getting bad. When we want to do something together (e.g., go to Thames, visit relatives for the day), I can't face the journey and she doesn't go alone. Perhaps a bit closer because 1 have confided or included my sister more in what is happening to me. Previously I never used to admit to anything (e.g., a headache) unless I absolutely had to. Person to whom she feels closest The patient is unwilling to enter into social engagements which involve sitting (i.e., which aggravate or initiate the pain). Making excuses can be difficult as she prefers to make as little of the pain as possible. Patient is also inclined to be more irritable and impatient than normal, at times.
2f~7
Sometimes a little closer, at other times she withdraws and seems further away. In summary, the respondents together suggested that the subject with pain was reasonably comfortable in her situation. Physical Illness was not central to her life, she felt understood and not far from her Ideal. However, the ISCRG responses indicated she was not well understood as her CO thought that illness was central in her life. The CO also expressed more frustration in her comments. Subject Pair Three. Subject Three was a 54-year-old woman with neck and chest pain which had been present for 3 years and 10 months. She was unable to work because of the pain. She had 4 children but lived only with her youngest son following the death of her husband. Her son, the CO, was 16 years old at the time of this assessment (Fig. 3). This respondent (grid 5) indicated she was coping well with the pain. There was a cluster of Self, Other, Doctor, and Ideal separated from the Physically Iil Person and Hypochondriac. Her son also associated Self, Doctor, and Other, but placed the Ideal and Physically I11 Person together near the triad (grid 6). He rated the Physically I11 Person as less worried about illness in general and less seriously ill than the Ideal or the Self triad. The grids suggested these two individuals had good understanding of the quality of life aside from pain, but the CO rated Physical Illness as more central in his mother's life than she did. This was reflected in the questionnaire responses.
GRID 5. PAIN SUBJECT 3, ISCRG
EXPRESSFEELINGS '\.
'\
ANXIOUS v~ /
OTHERSQ oIDEAL ._ -d~/: o o DOCTOR
IRRITACLE WORRY ILLNESS PAINSERIOUS
PHYSICALLYfLL 0
\ DEPRESSED\
He has matured and is a responsible and caring person. My relationship has changed as he has grown and matured and although he still needs guidance and support, I see him as a valued friend rather than a dependent son. His maturity and his taking on of various responsibilities: lawns, car maintenance, general repairs. Prepared to help with meals, shopping, and vacuuming. He becomes very concerned if I have seve:¢ pain for several days in a row. He belongs to our church youth group and has people he can talk with and who will play with him. (I don't like to see him around). I have no real worries with (my son). He is on good terms with our GP and has support from his sister. He also has some good friendships with his own age group. Perhaps he is more concerned than would be the case if his father was alive.
Person to whom she feels closest Since Mum developed chronic pain the biggest change would be that I've had to take on more responsibilities around the house, e.g., shopping,
!
/
/ EMOTIONSIMPORTANT'",b • .~ .
//'~ J
1/
•.
GRID 6. CLOSEST OTHER 3, ISCRG f-\ ,/
/
./
PAINSERIOUS \ ~ R R Y ILLNESS
#
\ OTHERS SELF•
EXPRESSFEELING5 I
IDEAL • PHYSICALLYILL I
DOCTOR
~
I" DEPRESSED
/ EMOTIONSIMPORTANT
/ '~,
\
HYPOCHONDRAC• -17." ~ - IRRITABLE # ANXIOUS
\ "\
Person with pain
\
0 HYI:~CHONDRIAC
OIHER PROBLEMS
,/
' OIHER PROBLEMS
Fig. 3. ISCRGs from Subject Pair Three. The pain subject (grid 5) presented a well understood, not ill, portrait. The person closest to her (grid 6) also suggested that she was understood but placed Physical Illness close to the Ideal, suggesting that the pain subject would like to be physically ill.
cooking, housework. I don't always have as much free time on my own as I would like. I've also had to alter my lifestyle slightly because Mum is not always available to provide transport after 10 p.m. (1 have a restricted licence). I have at times also stayed at home to look after Mum when the pain has been very bad. Looking after Mum has brought us both closer together. I have had to rely on God to get me through the day and as a Christian this has increased my faith tremendously. I feel that the chronic pain which my mother has developed has brought us closer together. Mum seems to open up to me about the pain and how she
2hS
feels more than I think she would have done before the pain started. It is often more difficult to communicate with Mum when the pain reaches a very bad or severe time. The chronic pain which developed has changed both my own life and my mother's life. Those changes have to be accepted ~ecause life will become impossible to cope with it" these changes aren't accepted. In summary, the pain has brought them closer together and this was perhaps why the CO attributed a more central role to the pain. The process of maturing may naturally have been accompanied by this developing closeness, particularly within their close family unit. However the pain was seen as central to their relationship for the CO, while for his mother the relationship of Mother and Son appeared primary. G R I D 7.
P A I N S U B J E C T 4, I S C R G
[ XPFIE SS F E E LINGS
-"
O ~ H f rt P R O ( I t E M S #
o'DEAL w HVPOO4ONOnlAC
o PHYSICAL L Y ~LL ANXIOUS
f
-
e DOCTO~ OTHERS • KqRIIABLE I
OSE~ W O l | f t Y It LNESS
~,
PAIN SE RIOUS
IrE M O T I O N S IMPOR I A N T
uEPr~ESSED
Subject Pail" Four Subject Four was 40 years old. She had pain in her lower back, groin, and both legs which had continued for 3 years and 3 months. She was unable to sit or carry anything and was on light duties at work. Her husband completed the CO questionnaire (Fig. 4). The individual with pain described herself ~s not expressing emotions fully but being reasonably well understood by her CO and by her Doctor. Her pain was more serious and she was more worried about illness and more depressed than the Physically II! Person. The Physically I11 Person was halfway between Self and Ideal. This subject described herself as bottling feelings and having more severe illness than the Physically II! Person (grid 7). Her husband saw things quite differently (grid 8). The Self was clustered with the Hypochondriac and Doctor. According to her husband she was a Hypochondriac with a strong emotional component to her pain and her Doctor was aware of this. The Physically I!1 Person was characterised by less emotional disturbance and other problems. The CO element, where the husband predicted he would be in her grid, was described as underestimating the severity of problems, and overestimating the emotional component to pain and the bottling of emotions. Certainly he does overestimate the emotional component to her pain as she described it. Review of their comments confirmed this lack of understanding and his emphasis on the role o| emotions in pain. Pert'on with pain Wc cannot enjoy going out. Sexual relations very difficult. Just generally feel 1 have spoilt our relationship, as social events are very tiring for me.
Person to whom she feels closest G R I D 8. C L O S E S T O T H E R 4, I S C R G
EXPRESS FEELINGS
.e
"
i
~, A N X I O U S ~, O T H E R PROBLEMS
"~
i
o IDEAL
'
o HYP~X~HONDR1AC OOCTL..., gSELr :
' 0p.;,si~A\t,
,
DEPRESSED
i
,tt
'. W O R R Y ILLNE~3S /
IRRITABLE PAIN ¢3FRIOUS
o 0 THEI:~
.,..
I
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(Positive changes) getting a waterbed. More difficult to communicate. Doesn't believe attitude or positive thinking can help at all. Doesn't think I can understand what she is going through. I feel further away because of inability to communicate properly. Outings being restricted mainly due to inability to sit for very long. Dancing impossible. Sex life very restricted. Going out and activities very restricted. Tension increased. Travel more difficult. I feel that a change in attitude would make a great deal of difference to the healing process and if she was able to believe this real progress would be made.
EMOTIONS IMPORTANT
Fig. 4. ISCRGs from Subject Pair Four. Here the pain subject suggested that Physical lllness may be a positive option (grid 7~ and the CO grid (grid 8) suggested that the person with pain was a Hypochondriac.
In summary, the individual with pain ~believed her CO had a reasonably accurate view of her illness. However, his view of her pain did not correspond with
269
GRID 9. PAIN SUBJECT 5, ISCRG
OTIIER PROBI.EMS EMOTIONS IMPORTANT DEPRFSSFD
IDFAt •
,
~¢
I
m'"OCt'*O~D~AC •
1
I
"1 DOCTOR SELF• eOlrHE~ EXPRESS FEELINGS "
1
,
/woR..,Ess
t
.......
ANXIOUS
/.
.~ "J~'PAINSERIOUS . -~ IRRITABLE
The CO grid (grid I0) described the element Self as slightly less irritable and less emotionally expressive than her CO or Doctor saw her. The Ideal and Physically II! Person were associated. The Hypochondriac was again at the extreme of the distress scales. The CO did not believe that his wife felt well understood. He placed the Physically 111 Person and Ideal togcther suggesting she was not physically ill but would like to be. The individual with pain described a classical physical illness pattern. This suggested she was not completely happy but might find it difficult to change from the position where she felt understood by her CO and her Doctor. Her CO placed the Ideal in the central cluster. He has implied that the individual with pain may be comfortable in her current circumstances and not strongly wishing for change. Their comments outlined frustration related to illness.
GRID 10. CLOSEST OTHER 5, ISCRG
i ~r
EMOTIONS IMPORtANt
/
• SELF
t IRRITABLE ~
\ /'
¢ PAIN SERIOUS EXPRESS f EEl INOS~
Fig. 5. ISCRGs from Subject i)air Five. The pain subject (grid q) indicated that evenjone understood her and thai she was physically ill. The ('(), however, (grid 10) again showed an association of the Ideal and Phy.~ical illness, suggesting that illness was tlesirable liar the pain subjecl.
hers. The CO was more aware of limitations to their lives which he attributed to her pain. On the ISCRG he described her as a Hypochondriac and in the questionnaire responses he describes problems in her attitude to the pain. Subject Pair Fit'e. Subject Five was 44 years old. She had left shoulder and arm pain and also pain in her chest and right shoulder. The pain had been present for 18 months. She was unable to work as a farmer because of this pain. Her husband completed the CO forms (Fig. 5). Subject Five described a close cluster of Self, CO, Doctor, and the Physically I11 Person (grid 9). The Ideal was less distressed, less irritable, and less seriously ill. The Hypochondriac was described as emotionally disturbed with other problems and bottled feelings. She saw herself as physically ill, well understood by her CO and Doctor, but far from her Ideal.
Person with pah~ Cannot work, cannot get dressed without help, cannot play sport. Short tempered, impatient, frustrated. Person to whom she feels closest The important thing is to get rid of the pain. Inability to do things for herself, e.g., getting dressed. Frustration of her not being able to do things with me that she used to do. In summary, the placement of Ideal within the primar5' cluster of the CO grid indicated a communication problem between these subjects. While the subject with pain said that she felt understood, her husband's perception of her illness was quite different. The quality of their relationship may be limited by the CO's suspicions that his wife was content as a Physically !11 Person.
Discussion
This study evaluated whether the information derived from the ISCRG was more or less useful than that obtained from an open-ended questionnaire. The ISCRG provided information on the framework of illness for each subject. The combination of the ISCRG and questionnaire data was very effective in identifying issues in the dyads understanding of iilncss and communication about the pain. COs often believed the pain was more central to the perception of self of the individual with pain than that person described. They wrote of limitations in their own lives because of the other person's pain and of distress at not being able to enjoy shared activities in the same way as previously. The responsibilities associated with caring for their partner were discussed. The
270 COs" perception of pain as central to the subject's life may relate to the spouse and family research reports that distressed spouses overestimate their partner's pain and assume a protective role in the relationship (Gil et al. 1987). However, ours was a highly selected sample and it would not be appropriate to generalise these findings to all pain sufferers. People referred to AHPC tend to be severely distressed and disabled by their pain. The literature suggests that their spouses and families would also be emotionally distressed and dissatisfied with the relationship. There was evidence of frustration and distress in the comments from the COs. However, given the major alteration in their lifestyles, which may include financial, social, and emotional changes, many of them appear to be coping remarkably well. In many of the dyads discussed, there were issues which could have been explored within a treatment setting. Sometimes these issues were as simple as both respondents seeing illness in the same way but not being aware that they agreed about their perception of illness. It may be that for these subjects who suffer from severe, disabling, chronic pain a pattern of not discussing illness had developed and this pattern now limits the general communication between them. However, the incongruity between the understanding of illness of the CO and the person with pain may be an encouraging sign. Swanson and Maruta (1980) found agreement between spouse and patient on the severity of illness was related to poor outcome. It may be that, given appropriate intervention, these subjects will do well in improving their understanding of each other. Incongruities in the perception of illness might also provide a useful therapeutic focus for initiating change and rehabilitation. Anyone living with, or offering social support to, an individual with chronic pain must be affected by that pain and have some influence on the pain sufferer's self-concept and coping. Selecting the spouse as the most appropriate individual to study does not take into account other living arrangements or social support networks. In this project subjects were given the opportunity to discuss the person to whom they felt closest. When the subject was married, the spouse was chosen as the CO; however, siblings, friends, children, and lovers were chosen as the CO by non-married subjects. Using COs thus secms to include more subjects and a wider range of lifestyle arrangements without significantly altering the trend of the results. Repertory grid technique was useful because of the subtlety of the response derived. The grid portrayed the individual's relationship to their CO more comprehensively and perhaps with less screening for social acceptability. The ISCRG had both advantages and disadvantages. Several of the grids revealed differences between the pain respondent's grid and tile CO's per-
ception of illness. These differences may not have been obvious from the questionnaire comments. However, using the ISCRG meant imposing the researchers' perception of illness on the individual. A modified ISCRG or purpose designed grid could be developed for evaluating relationships and understanding of illness. This technique is most useful with small numbers of subjects and requires interpretation. The most appropriate application may be with small groups of individuals who are participating in intensive pain management programmes. The other purpose of this study was the search for positive outcomes from the experience of pain. Few positive changes were described. Perhaps people attending the Pain Clinic have had overwhelmingly negative experiences, and it is the severity of their distress which is an initial referring factor. Alternatively, having gained the attention of a clinician, they may be wishing to present the problem rather than describe how well they cope. This seems to be a pragmatic response to the high demands on the medical system. Some subjects did mention positive changes and these generally included greater understanding of self, others, and relationships, or the discovery of new options in life because of the pressure to change their lifestyle which stemmed from the pain. Subjects also mentioned, often sadly, the appreciation of things which they had once taken for granted, particularly in terms of physical and social abilities. These aspects of positive change are factors unlikely to enter a medical interview. This may be one reason for the overwhelming negative impression gained by clinicians: their interviews do not focus on or encourage discussion of the positive changes which may have occurred following pain onset. If they did, they may encounter anger from the patient being interviewed, as the person may feel their suffering is being trivialised. Investigation of the effect of pain upon relationships with COs using open-ended questionnaire and the ISCRG indicated CO responses and patterns of relationship were similar to those found in research on family and spouse relationships. The advantage of the category CO seemed to be in including a wider range of relationships within the research findings. Questionnaire responses tended to describe negative effects of pain, although some positive changes were discussed. The ISCRG revealed subtleties in relationships which would be fertile ground for therapeutic work.
Acknowledgement We would like to thank the Health Research Council of New Zealand (formerly the Medical Research Council) for providing Frances James with a Postgraduate Scholarship for this research.
271
References Beutler, L.E., Daldrup, R., Engle, D., Guest, P., Corbishley, A. and Meredith, K.E., Family dynamics and emotional expression among patients with chronic pain and depression, Pain, 32 (1988) 65-72. Block, A.R. and Boyer, S.L., The spouse's adjustment to chronic pain: cognitive and emotional factors, Soc. Sci. Med., 19 {1984) 1313-1318. Burckhardt, C.S., The impact of arthritis on quality of life, Nurs. Res., 34 (1985) 11-16. Button, E., Personal construct theorry: the concepts. In: E. Button (Ed.), Personal Construct Theory and Mental Health. Theory, Research, and Practice, Croom Helm, London. 1985, pp. 3-30. Campbell, T.L., Family's impact on health: a critical review and annotated bibliography {Mental Health Service system reports. Series DN: Health/Mental Health, No. 6.), US Dept Hlth Hum. Serv., NIMH, MD, 1987. Gil, K.M., Keefe, F.J., Crisson, J.E. and Van Dalfsen, P.J., Social support and pain behaviour, Pain, 29 (1987) 209-217. Hafstrom, J.L. and Schram, V.P., Chronic illness in couples: selected characteristics, including wives' satisfaction with and perception of marital relationships, Fam. Relations, 33 {1984) 195-203. Jamison, R.N. and Virts, K.L., The influence of family support on chronic pain, Behav. Res. Ther., 28 (1990) 283-287. Kelly, G.A., The Psychology of Personal Constructs, Vols. 1 and 2, Norton, New York, 1955. Kerns, R.D. and Turk, D.C., Depression and chronic pain: the mediating role of the spouse, J. Marriage Family, 46 (1984) 845 -852.
Large, R.G., Prediction of treatment response in pain patients: The illness Self-Concept Repertory Grid and EMG feedback, Pain, 21 (1985a) 279-287. Large, R.G., Self concepts and illness attitudes in chronic pain: a repertory grid study of a pain management programme, Pain, 23 (1985b) 113-119. Large, R.G. and James, F.R., Personalised evaluation of self-hypnosis as a treatment for chronic pain: a repertory grid analysis, Pain, 35 (1988) 155-169. Payne, B. and Norfleet, M.A., Chronic pain and the family: a review, Pain, 26 (1986) 1-22. Rowat, K.M. and Knafl, K.A., Living with chronic pain: the spouse's perspective, Pain, 23 (1985) 259-271. Slater, P., The Measurement of Intrapersonal Space by Grid Technique, Vol. 1, Explorations of Intrapersonal Space, Wiley, London, 1976. Slater, P., Manual for GAP 85 {version of the Grid Analysis Package accessible at the University of London Computing Centre), unpublished manuscript, University of London, Computer Centre, London, 1985. Swanson, D.W. and Maruta, T., The family viewpoint of chronic pain, Pain, 8 {1980) 163-166 Turk, D.C., Flor, H. and Rudy, T.E., Pain and families. !. Etiology, maintenance, and psychosocial impact, Pain, 30 {1987) 3-27. Viney, L., Physi:al illnc~,s; a gt~idebook for the kingdom of the sick. In: E. Button (Ed.), Personal Construct Theory and Mental Health: Theory, Research and Practice, Croom Helm, London, 1985, pp. 262-274.
263
PAIN 02089
Chronic pain, relationships and illness self-construct Frances R. James and Robert G. Large Department of Psychiatry and Behaciourai Science, School of Medicine, Unirersity of Auckland, Auckland (New Zealand) and Pain Clinic, Auckland Hospital, Auckland (New Zealand) (Received 7 August 1991, revision received 24 February 1992, accepted 27 February 1992)
Summary A standardised illness self-construct repertory grid was used to evaluate relationships between people with chronic pain and the person to whom they felt closest. The 'Closest Other' was used to evaluate a wider range of relationships than generally included in research on 'spouse' reactions to chronic pain. The illness self-construct repertory grid indicated that closest others tended to place illness more centrally in the life of the individual with pain than did the person who had pain. The repertory grid provided information about the relationship which was not available from responses to open-ended questions. The statistical and theoretical assumptions of repertory grid technique make it ideal for intensive study of small groups or individuals best suited to clinical settings and not for screening large numbers of subjects.
Key words: Pain; Spouse; Family; Repertory grids
Introduction This paper reports the effects of chronic pain on individuals with pain and their 'Closest Other' (CO). Most of the work on the effects of pain upon others has focussed on the spouse or family. The CO was used in this project because not all people with pain have a spouse or family, and they may not be the people to whom the subject turns for support. Research on the interaction of pain and marital satisfaction, the effects of pain upon the spouse, and the effects of the spouse's behaviour upon pain has been reviewed by Payne and Norfleet (19861, Campbell (1987), and Turk et al. (1987). A number of families coped well with chronic illness and some reported that they were closer because of the illness (Turk et al. 1987). Support from the spouse has been shown to be important in reducing depression in people with chronic
Correspondence to: Dr. Bob Large, Department of Psychiatry and Behavioural Science, School of Medicine, University of Auckland, Private Bag 92019, Auckland, New Zealand. Tel.: (00649) 37-37-989; FAX: (00649) 37-37-493.
pain (Kerns and Turk 1984), adding to quality of life (Burckhardt 1985)and increasing benefit from treatment (Jamison and Virts 1990). Block and Boyer (19841 found that spouses of people with chronic pain did not, in general, have elevated psychological distress. However, psychological distress was higher if the quality of the marriage was poor, if the spouses were pessimistic about prognosis, and if they saw the patient as disabled and distressed. Wives of chronically ill individuals have been found to be more emotionally affected and maritally dissatisfied than husbands (Hafstrom and Schram 19841. Uncertainty about pain, helplessness, and disruption of patterns of family living were central to the distress experienced by spouses (Rowat and Knafl 1985). Spouses who reported being highly distressed were partners of individuals with longer pain durations and more chance of being unemployed. Consequently more demands were made on them for helping in the care of the individual (Gii et al. 19871. Distressed spouses produced higher ratings of their spouses pain while lowdistress spouses underestimated pain and were not aware of factors which mediated pain. Spouses in a high-distress group were more likely to have assumed a
2~4 "protector" role while t~ese who had low distress were m o r e likely to "avoid' the issue of pain. High a g r e e m e n t b e t w e e n patient a n d spouse in the evaluation of severity a n d impact of pain was related to p o o r t r e a t m e n t o u t c o m e (Swanson a n d M a r u t a 1980). Initial incongruity b e t w e e n patients a n d significant others" ratings of family relationships was associated with positive change in pain stau~s and d e p r e s s i o n symptoms (Beutler et al. 1988). Kelly (1955), in articulating his ' P e r s o n a l Construct Theory', hypothesised that each individual develops an u n d e r s t a n d i n g of the world which is unique. This system for u n d e r s t a n d i n g the world will d e t e r m i n e the person's response to situations such as chronic illness. People who have not experienced chronic illness before build their u n d e r s t a n d i n g of illness a r o u n d previous experience of acute illness or g e n e r a l i s e d events. The hospital system and the family f u r t h e r influence their interpretation of events. The individual's ability to adjust to illness will be partially d e t e r m i n e d by the distance between illness self-construct a n d previous construction of self (Viney 1985). For acute illness, constructs of helplessness receive m o r e validation than those of competence. With chronic illness, these constructs may need to be revised so that effective rehabilitation can take place (Viney 1985). T h e e x p e r i e n c e of illness may involve a tightening of construing to match the limitations of the experienced world. Button (1985), in work with anorexic patients, found that a return to normal weight left subjects with a much less clearly defined view of themselves than when they were thin. O n e - d i m e n s i o n a l construing, w h e r e all constructs were s u b s u m e d under a p r i m a r y superordinatc construct, was predictive of a negative outcome from treatment. In general, the subjects w h o improved had defined themselves less extremely initially (Button 1985). The Illness Self-Construct R e p e r t o r y G r i d ( I S C R G ) was developed to investigate personal r e s p o n s e s to chronic pain or illness ( L a r g e 1985a). T h e I S C R G has been used in the evaluation of a Pain M a n a g e m e n t P r o g r a m m e (Large 1985b) and to m o n i t o r p r o g r e s s and m a i n t e n a n c e of effect in a self-hypnosis training prog r a m m e for people with chronic pain ( L a r g e a n d J a m e s 1988). In this study, the C O ' s description of the world of the individual with pain using the I S C R G was collected in conjunction with their c o m m e n t s on the quality of their relationship. We were i n t e r e s t e d in the differential utility a n d explanatory p o w e r of the ISC R G vis-a-vie the o p e n - e n d e d qaestion~mire.
Method Subjects for this study were ~,~,tpatients at Auckland Hospital Pain Clinic (AHPC). AHPC is a tertiary referral service. People
referred to the clinic have seen at least one specialist, they have had pain for an average duration of 5 years, and they tend to be severely disabled by the pain. Each individual was asked to name the person to whom they felt closest or by whom they were most understood. They were excluded from the project if they did not name anyone or were not happy to have this person invited to participate. Few people were not approi:riate on these grounds. Pain subjects were shown both versions of the questionnaire to emphasise that no private information was being asked. The CO was given a sealed envelope which included a subject information sheet, consent form, and questionnaires. It was strongly suggested that each member of the dyad should complete the forms separately and need not show or discuss their answers with their co-respondent. Both the individual attending the Pain Clinic and the CO were asked to describe important changes in their relationship since the pain began: which changes had been good and which had been a problem. They were asked whether they felt closer or further apart, whether it was easier or more difficult to communicate, and to give any other information which they felt was important. Answers to the questionnaires have been presented verbatim in conjunction with discussion of the ISCRG responses. Each respondent completed the ISCRG (Large 1985a). The ISCRG used the elements 'As ! am', • As ! would like to be', •As the person closest to me sees me', "As my doctor sees me', "Like a hypochondriac', and ~Like a physically ill person'. The constructs on which these elements were rated included seriousness of illness, worry about illness, expression of emotions, the part emotions play in causing or maintaining my pain, depression, anxiety, whether they have problems other than pain, and irritability. The grid is presented with the element labels at the top of each page and the 8 constructs rated on visual analogue scales (VAS) down the page (Large 1985a). Repertory grids were analysed using the INGRID package (Slater 1976, 1985). The CO was asked to complete the grid 'As they imagined the person who has pain would'. When interpreting the grid pairs, it is important to remember that the elements did not correspond exactly. There was no CO element which corresponded with the pain subject's element 'As I am'. The pain subject's 'As the person closest to me sccs me' would be expected to overlap with the CO',,, 'As ! am'. The distance between each subject's 'As the person closest to me sees me' and 'As I am' indicated the level of understanding which each of the respondents believed the CO had of the pain subject. Nineteen subjects with pain completed the forms, and 15 COs completed and returneff th:rir section. Mean age of the subjects with pain was 45.5 years (S.D. = 15.1). Mean age of the COs was 42.5 years (S.D. = 16.9), All subjects were caucasian. Women were overrepresented in the pain sample (X 2 (1, N=34)=5.97, P<0.05). The CO was a spouse in 8 cases or a child (2), friend/lover (2), friend (1), ex-boyfriend (1), or sister (1) in other cases. Twelve of the subjects with chronic pain had been forced to either change their job, reduce their work hours, or give up work because of the pain. Only ! CO had changed her occupation and this was to return to work as the household was experiencing financial difficulty.
The interpretation of grids The INGRID package calculates 3 principal components from the data .,~atrix. The first 2 components are plotted as the horizontal and vertical axes of the grid. Constructs and elements are plotted in relationship to these component axes. If a construct is close to horizontal it loads more heavily on the first component; if it is midway between the axes it loads equally on both components. Elements are distributed as they are rated within the total construct space. To discover how an individual rated particular elements and constructs, the 2 construct poles can be joined though the axis of the
265 grid; perpendicular lines drawn from the construct diameter to the elements studied will indicate the relative positions of any elements on that construct. The poles marked on the grids displayed are the distress poles of the constructs.
GRID 1. PAIN SUBJECT 1, ISCRG EXPRESSFEELINGS
Results
~ EMO11ONSIMPOR[ANT
~ FAINSERIOUS
/
"
General impressions from the ISCRG
i
There were general differences apparent when comparing patient's and CO's grids. COs were more likely to define Physical Illness as central to the subject and placed themselves (as the CO) and the Doctor in positions indicating that they understood the pain subject well. The people with pain were less likely to place illness centrally and did not feel understood by either the CO or Doctor.
....
IDEALo DOCTORot ] POC. . . . . . . t OTHERSo° . . . . . . . . . . . . . .
\~
\ ~ - - DEPRESSED PHYSICALLYILL ~ - --- OIHER PROBLEMS • - i ~"" WORRY'LtNESS
/
SELFo
//
' , ,~
-""--""-
I
~J*'" "
"'" \ "'" IRRITABLF ANXIOUS
Specific examples of ISCRG and Questionnaire responses The responses from 5 of 15 subject pairs who completed both sets of forms are included. All the responses were interesting; these ones have been selected to show the variety of responses obtained using this technique. The theoretical basis of personal construct theory and the sophistication of the analysis techniques available make repertory grids an ideal vehicle for the discussion of individuals. Each grid is interpreted and discussed separately in the spirit of this idiographic enquiry. Subject Pair One. Subject One was aged 60. She had a'frozen' shoulder which had been present for 2 years. She was working full time. Her husband completed the CO forms (Fig. 1). In grid 1, the individual with pain has indicated a belief that her CO saw her as a Hypochondriac. The placement of the Self suggested that she was less expressive of her feelings, more anxious and irritable, and had less of an emotional component to her pain tban she believed her CO saw. Her Ideal, close to the Doctor's perception, was more expressive of emotion and less anxious and irritable. The Physically Ill Person was at the extreme of this person's constructs. She did not perceive herself as being like a Physically Ill Person. In contrast, the CO (grid 2) felt that he had quite a good understanding of the person with pain in that the CO was close to the Self. He perceived her as seriously ill, with a strong emotional component to the pain, but not irritable, depressed, or anxious. He believed that the Doctor had an idealised image of the patient as someone who was not worried about pain and not expressive of feelings. The individual with pain was neither described as a Physically I11 Person nor a Hypochondriac. In this dyad the CO felt he had a good understanding of his spouse. In contrast, she believed her CO
GRID 2. CLOSEST OTHER 1, ISCRG
// ANX OUS.
\
//'
°%:L?/
.... QIDEAL °DOCTOR
OIHER PROBLEMsEI
eHYPOCHONDRIAC SELF
EXPRESSFEELINGS\ WORRY ILLNESS\
\
1
/
PAINSERIOUS-"--- _.---j'lk.~. . . . . . . . . . . F
EMOTIONSIMPORTANT
Fig. 1. ISCRGs from Subject Pair One. Discussion of the interpretation of grids is included at the end of the Method section. The distress poles of each construct are labelled on each grid. The pain subject's grid (grid 1) indicated that she saw herself as isolated from others, her CO saw her as a Hypochondriac, and her Doctor had an idealised image. She did not define herself as physically ill. The CO (grid 2) agreed that the Doctor had an idealised image, he also did not see her as physically ill but he mistakenly believed that he had a good understanding of her.
identified her as a Hypochondriac. The CO underestimated the anxiety and depression felt, as his wife was less expressive of emotion than he realised. The following responses are quoted from their questionn~i:~';.
Person with pain Sometimes dressing, unable to reach around so find it a problem to ask for help as I feel a nuisance and he gets annoyed. Yes I know him well. We communicate well. Only not with my pain. I cover it up.
2~,
I do not like to express my feelings, or extent of pain, so do not share it with anyone. Suffer in silence, so not even my husband knows how bad the pain is, so life has not altered. We are still very happy and close, but I feel a loner and often wish I was able to share the pain and not bottle it up. Person to whom size feels closest There is no difference as we have always communicated well. Feel closer as person with pain needs more attention and comfort. We are closer so talk better. My wife never complains so 1 do not know if she is in pain or not. I can tell because she becomes very quiet. In summary, there were misunderstandings in this relationship related to the pain. From the comments i.t was clear that both subjects were aware of not talking about the pain. The subject with pain believed that her CO saw her as a hypochondriac. This was not the case. Subject Pair Two. Subject Two was a 52-year-old woman with pain which had progressively affected her anal, rectal, ar, d urethral regions. The pain had been present for 2.5 years. Her sister was her CO (Fig. 2). Subject Pair Two both associated Self, Other, and Doctor. However, construct positions gave quite differcnt meanings to the grids. The individual with pain (grid 3) portrayed the Self element as not depressed, anxious, irritable, worried about pain or other problems, with no emotional component to pain, and not far from her Ideal. Her CO (grid 4) dcscribcd a pattern of Self, Other, and Doctor who wcrc worried about pain, seriously ill, had an emotional component to the pain, but no other problems. The CO placed the Self triad close to the Physically II1 Person while the individual with pain placed the triad close to the Ideal. This was an important difference in perspective. The individual with pain was indicating that things were not too bad. However, her sister labelled her as a Physically III Person and suggested her illness was serious. Both subjects thought that the CO had a reasonable understanding of the individual with pain. This belief may make it difficult for any improvement to occur. Questionnaire responses from this dyad were the following.
Person with pain Since I have discussed my problems and involved her I have had more understanding. I think she no longer sees me as a fit, all-capable person, with unending vitality and resources. We go walking more. I have confided or included my sister more in what is happening to me. I have had to alter my planning of social and recreational activities because I can't sit for long without
GRID 3. PAIN SUBJECT 2, ISCRG _ PAINSERIOUS ~
EMOTIONSIMPORTANT -,, \\
\
PHYStCALLYILL
// ~.
SELF° OTHERSo IDEAL• DOE;TORe
t ,
/ OTHERPROBLEMS / ANXIOUS IRRITABLE tJ ~ DEPRESSED / W O R R Y ILLNESS . |
~
'\
HYI:~HONDRIAC \
\
/ EXPRESSFEELINGS /-
.,
j
l
j
GRID 4. CLOSEST OTHER 2, ISCRG
/.
IRRITABLEj " ANXIOUS / / DEPRE5~;ED /
/
//
' ~ H E R PROBLEMS
H~fPOCHON~qlAC •
...................
JEyF.__ 4 Or ttEIK~ •
ODOCTOR IDEALo
t
O~IYfllC.ALtV ILLO \
,/
'\ /
FMOtlONSIMPORTANT"~,. PAiNSERIOUS~'~ WORRYILLNESS
~"~-.~
_.
_~1//"
.dr.'
EXPRESSFEELINQS
Fig. 2, ISCRGs from Subject Pair Two. The pain subject (grid 3) indicated that all was well. that she felt wlderstood by her CO and was not ill. However. the CO (grid 4) suggested that illness was more important and believed that the pain subject was further from her Ideal.
the pain getting bad. When we want to do something together (e.g., go to Thames, visit relatives for the day), I can't face the journey and she doesn't go alone. Perhaps a bit closer because 1 have confided or included my sister more in what is happening to me. Previously I never used to admit to anything (e.g., a headache) unless I absolutely had to. Person to whom she feels closest The patient is unwilling to enter into social engagements which involve sitting (i.e., which aggravate or initiate the pain). Making excuses can be difficult as she prefers to make as little of the pain as possible. Patient is also inclined to be more irritable and impatient than normal, at times.
2f~7
Sometimes a little closer, at other times she withdraws and seems further away. In summary, the respondents together suggested that the subject with pain was reasonably comfortable in her situation. Physical Illness was not central to her life, she felt understood and not far from her Ideal. However, the ISCRG responses indicated she was not well understood as her CO thought that illness was central in her life. The CO also expressed more frustration in her comments. Subject Pair Three. Subject Three was a 54-year-old woman with neck and chest pain which had been present for 3 years and 10 months. She was unable to work because of the pain. She had 4 children but lived only with her youngest son following the death of her husband. Her son, the CO, was 16 years old at the time of this assessment (Fig. 3). This respondent (grid 5) indicated she was coping well with the pain. There was a cluster of Self, Other, Doctor, and Ideal separated from the Physically Iil Person and Hypochondriac. Her son also associated Self, Doctor, and Other, but placed the Ideal and Physically I11 Person together near the triad (grid 6). He rated the Physically I11 Person as less worried about illness in general and less seriously ill than the Ideal or the Self triad. The grids suggested these two individuals had good understanding of the quality of life aside from pain, but the CO rated Physical Illness as more central in his mother's life than she did. This was reflected in the questionnaire responses.
GRID 5. PAIN SUBJECT 3, ISCRG
EXPRESSFEELINGS '\.
'\
ANXIOUS v~ /
OTHERSQ oIDEAL ._ -d~/: o o DOCTOR
IRRITACLE WORRY ILLNESS PAINSERIOUS
PHYSICALLYfLL 0
\ DEPRESSED\
He has matured and is a responsible and caring person. My relationship has changed as he has grown and matured and although he still needs guidance and support, I see him as a valued friend rather than a dependent son. His maturity and his taking on of various responsibilities: lawns, car maintenance, general repairs. Prepared to help with meals, shopping, and vacuuming. He becomes very concerned if I have seve:¢ pain for several days in a row. He belongs to our church youth group and has people he can talk with and who will play with him. (I don't like to see him around). I have no real worries with (my son). He is on good terms with our GP and has support from his sister. He also has some good friendships with his own age group. Perhaps he is more concerned than would be the case if his father was alive.
Person to whom she feels closest Since Mum developed chronic pain the biggest change would be that I've had to take on more responsibilities around the house, e.g., shopping,
!
/
/ EMOTIONSIMPORTANT'",b • .~ .
//'~ J
1/
•.
GRID 6. CLOSEST OTHER 3, ISCRG f-\ ,/
/
./
PAINSERIOUS \ ~ R R Y ILLNESS
#
\ OTHERS SELF•
EXPRESSFEELING5 I
IDEAL • PHYSICALLYILL I
DOCTOR
~
I" DEPRESSED
/ EMOTIONSIMPORTANT
/ '~,
\
HYPOCHONDRAC• -17." ~ - IRRITABLE # ANXIOUS
\ "\
Person with pain
\
0 HYI:~CHONDRIAC
OIHER PROBLEMS
,/
' OIHER PROBLEMS
Fig. 3. ISCRGs from Subject Pair Three. The pain subject (grid 5) presented a well understood, not ill, portrait. The person closest to her (grid 6) also suggested that she was understood but placed Physical Illness close to the Ideal, suggesting that the pain subject would like to be physically ill.
cooking, housework. I don't always have as much free time on my own as I would like. I've also had to alter my lifestyle slightly because Mum is not always available to provide transport after 10 p.m. (1 have a restricted licence). I have at times also stayed at home to look after Mum when the pain has been very bad. Looking after Mum has brought us both closer together. I have had to rely on God to get me through the day and as a Christian this has increased my faith tremendously. I feel that the chronic pain which my mother has developed has brought us closer together. Mum seems to open up to me about the pain and how she
2hS
feels more than I think she would have done before the pain started. It is often more difficult to communicate with Mum when the pain reaches a very bad or severe time. The chronic pain which developed has changed both my own life and my mother's life. Those changes have to be accepted ~ecause life will become impossible to cope with it" these changes aren't accepted. In summary, the pain has brought them closer together and this was perhaps why the CO attributed a more central role to the pain. The process of maturing may naturally have been accompanied by this developing closeness, particularly within their close family unit. However the pain was seen as central to their relationship for the CO, while for his mother the relationship of Mother and Son appeared primary. G R I D 7.
P A I N S U B J E C T 4, I S C R G
[ XPFIE SS F E E LINGS
-"
O ~ H f rt P R O ( I t E M S #
o'DEAL w HVPOO4ONOnlAC
o PHYSICAL L Y ~LL ANXIOUS
f
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e DOCTO~ OTHERS • KqRIIABLE I
OSE~ W O l | f t Y It LNESS
~,
PAIN SE RIOUS
IrE M O T I O N S IMPOR I A N T
uEPr~ESSED
Subject Pail" Four Subject Four was 40 years old. She had pain in her lower back, groin, and both legs which had continued for 3 years and 3 months. She was unable to sit or carry anything and was on light duties at work. Her husband completed the CO questionnaire (Fig. 4). The individual with pain described herself ~s not expressing emotions fully but being reasonably well understood by her CO and by her Doctor. Her pain was more serious and she was more worried about illness and more depressed than the Physically II! Person. The Physically I11 Person was halfway between Self and Ideal. This subject described herself as bottling feelings and having more severe illness than the Physically II! Person (grid 7). Her husband saw things quite differently (grid 8). The Self was clustered with the Hypochondriac and Doctor. According to her husband she was a Hypochondriac with a strong emotional component to her pain and her Doctor was aware of this. The Physically I!1 Person was characterised by less emotional disturbance and other problems. The CO element, where the husband predicted he would be in her grid, was described as underestimating the severity of problems, and overestimating the emotional component to pain and the bottling of emotions. Certainly he does overestimate the emotional component to her pain as she described it. Review of their comments confirmed this lack of understanding and his emphasis on the role o| emotions in pain. Pert'on with pain Wc cannot enjoy going out. Sexual relations very difficult. Just generally feel 1 have spoilt our relationship, as social events are very tiring for me.
Person to whom she feels closest G R I D 8. C L O S E S T O T H E R 4, I S C R G
EXPRESS FEELINGS
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IRRITABLE PAIN ¢3FRIOUS
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(Positive changes) getting a waterbed. More difficult to communicate. Doesn't believe attitude or positive thinking can help at all. Doesn't think I can understand what she is going through. I feel further away because of inability to communicate properly. Outings being restricted mainly due to inability to sit for very long. Dancing impossible. Sex life very restricted. Going out and activities very restricted. Tension increased. Travel more difficult. I feel that a change in attitude would make a great deal of difference to the healing process and if she was able to believe this real progress would be made.
EMOTIONS IMPORTANT
Fig. 4. ISCRGs from Subject Pair Four. Here the pain subject suggested that Physical lllness may be a positive option (grid 7~ and the CO grid (grid 8) suggested that the person with pain was a Hypochondriac.
In summary, the individual with pain ~believed her CO had a reasonably accurate view of her illness. However, his view of her pain did not correspond with
269
GRID 9. PAIN SUBJECT 5, ISCRG
OTIIER PROBI.EMS EMOTIONS IMPORTANT DEPRFSSFD
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The CO grid (grid I0) described the element Self as slightly less irritable and less emotionally expressive than her CO or Doctor saw her. The Ideal and Physically II! Person were associated. The Hypochondriac was again at the extreme of the distress scales. The CO did not believe that his wife felt well understood. He placed the Physically 111 Person and Ideal togcther suggesting she was not physically ill but would like to be. The individual with pain described a classical physical illness pattern. This suggested she was not completely happy but might find it difficult to change from the position where she felt understood by her CO and her Doctor. Her CO placed the Ideal in the central cluster. He has implied that the individual with pain may be comfortable in her current circumstances and not strongly wishing for change. Their comments outlined frustration related to illness.
GRID 10. CLOSEST OTHER 5, ISCRG
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EMOTIONS IMPORtANt
/
• SELF
t IRRITABLE ~
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¢ PAIN SERIOUS EXPRESS f EEl INOS~
Fig. 5. ISCRGs from Subject i)air Five. The pain subject (grid q) indicated that evenjone understood her and thai she was physically ill. The ('(), however, (grid 10) again showed an association of the Ideal and Phy.~ical illness, suggesting that illness was tlesirable liar the pain subjecl.
hers. The CO was more aware of limitations to their lives which he attributed to her pain. On the ISCRG he described her as a Hypochondriac and in the questionnaire responses he describes problems in her attitude to the pain. Subject Pair Fit'e. Subject Five was 44 years old. She had left shoulder and arm pain and also pain in her chest and right shoulder. The pain had been present for 18 months. She was unable to work as a farmer because of this pain. Her husband completed the CO forms (Fig. 5). Subject Five described a close cluster of Self, CO, Doctor, and the Physically I11 Person (grid 9). The Ideal was less distressed, less irritable, and less seriously ill. The Hypochondriac was described as emotionally disturbed with other problems and bottled feelings. She saw herself as physically ill, well understood by her CO and Doctor, but far from her Ideal.
Person with pah~ Cannot work, cannot get dressed without help, cannot play sport. Short tempered, impatient, frustrated. Person to whom she feels closest The important thing is to get rid of the pain. Inability to do things for herself, e.g., getting dressed. Frustration of her not being able to do things with me that she used to do. In summary, the placement of Ideal within the primar5' cluster of the CO grid indicated a communication problem between these subjects. While the subject with pain said that she felt understood, her husband's perception of her illness was quite different. The quality of their relationship may be limited by the CO's suspicions that his wife was content as a Physically !11 Person.
Discussion
This study evaluated whether the information derived from the ISCRG was more or less useful than that obtained from an open-ended questionnaire. The ISCRG provided information on the framework of illness for each subject. The combination of the ISCRG and questionnaire data was very effective in identifying issues in the dyads understanding of iilncss and communication about the pain. COs often believed the pain was more central to the perception of self of the individual with pain than that person described. They wrote of limitations in their own lives because of the other person's pain and of distress at not being able to enjoy shared activities in the same way as previously. The responsibilities associated with caring for their partner were discussed. The
270 COs" perception of pain as central to the subject's life may relate to the spouse and family research reports that distressed spouses overestimate their partner's pain and assume a protective role in the relationship (Gil et al. 1987). However, ours was a highly selected sample and it would not be appropriate to generalise these findings to all pain sufferers. People referred to AHPC tend to be severely distressed and disabled by their pain. The literature suggests that their spouses and families would also be emotionally distressed and dissatisfied with the relationship. There was evidence of frustration and distress in the comments from the COs. However, given the major alteration in their lifestyles, which may include financial, social, and emotional changes, many of them appear to be coping remarkably well. In many of the dyads discussed, there were issues which could have been explored within a treatment setting. Sometimes these issues were as simple as both respondents seeing illness in the same way but not being aware that they agreed about their perception of illness. It may be that for these subjects who suffer from severe, disabling, chronic pain a pattern of not discussing illness had developed and this pattern now limits the general communication between them. However, the incongruity between the understanding of illness of the CO and the person with pain may be an encouraging sign. Swanson and Maruta (1980) found agreement between spouse and patient on the severity of illness was related to poor outcome. It may be that, given appropriate intervention, these subjects will do well in improving their understanding of each other. Incongruities in the perception of illness might also provide a useful therapeutic focus for initiating change and rehabilitation. Anyone living with, or offering social support to, an individual with chronic pain must be affected by that pain and have some influence on the pain sufferer's self-concept and coping. Selecting the spouse as the most appropriate individual to study does not take into account other living arrangements or social support networks. In this project subjects were given the opportunity to discuss the person to whom they felt closest. When the subject was married, the spouse was chosen as the CO; however, siblings, friends, children, and lovers were chosen as the CO by non-married subjects. Using COs thus secms to include more subjects and a wider range of lifestyle arrangements without significantly altering the trend of the results. Repertory grid technique was useful because of the subtlety of the response derived. The grid portrayed the individual's relationship to their CO more comprehensively and perhaps with less screening for social acceptability. The ISCRG had both advantages and disadvantages. Several of the grids revealed differences between the pain respondent's grid and tile CO's per-
ception of illness. These differences may not have been obvious from the questionnaire comments. However, using the ISCRG meant imposing the researchers' perception of illness on the individual. A modified ISCRG or purpose designed grid could be developed for evaluating relationships and understanding of illness. This technique is most useful with small numbers of subjects and requires interpretation. The most appropriate application may be with small groups of individuals who are participating in intensive pain management programmes. The other purpose of this study was the search for positive outcomes from the experience of pain. Few positive changes were described. Perhaps people attending the Pain Clinic have had overwhelmingly negative experiences, and it is the severity of their distress which is an initial referring factor. Alternatively, having gained the attention of a clinician, they may be wishing to present the problem rather than describe how well they cope. This seems to be a pragmatic response to the high demands on the medical system. Some subjects did mention positive changes and these generally included greater understanding of self, others, and relationships, or the discovery of new options in life because of the pressure to change their lifestyle which stemmed from the pain. Subjects also mentioned, often sadly, the appreciation of things which they had once taken for granted, particularly in terms of physical and social abilities. These aspects of positive change are factors unlikely to enter a medical interview. This may be one reason for the overwhelming negative impression gained by clinicians: their interviews do not focus on or encourage discussion of the positive changes which may have occurred following pain onset. If they did, they may encounter anger from the patient being interviewed, as the person may feel their suffering is being trivialised. Investigation of the effect of pain upon relationships with COs using open-ended questionnaire and the ISCRG indicated CO responses and patterns of relationship were similar to those found in research on family and spouse relationships. The advantage of the category CO seemed to be in including a wider range of relationships within the research findings. Questionnaire responses tended to describe negative effects of pain, although some positive changes were discussed. The ISCRG revealed subtleties in relationships which would be fertile ground for therapeutic work.
Acknowledgement We would like to thank the Health Research Council of New Zealand (formerly the Medical Research Council) for providing Frances James with a Postgraduate Scholarship for this research.
271
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