Journal of hychosomorrr Prmted in Great Britain

Research. Vol. 36, No

THE KNOWLEDGE

3, pp 211-217.

0022.-3999/92 $5X0+ .OO G 1992 Pergamon Press plc

AND BELIEFS OF FAMILY

ABOUT

CHRONIC

SIDNEY BENJAMIN,*~ (Receirvd

1992.

18 February

CARE GIVERS

PAIN PATIENTS

JUDITH MAWER? 1991; accepted

and SEAN LENNON+

in revised form

23 July

1991)

Abstract-The knowledge and beliefs of 34 care givers (CGs) of chronic pain clinic patients were assessed regarding the causes of the patients’ disorders, the CGs’ preferred treatment and their contribution to it. Most CGs expressed dissatisfaction with previous investigations. They believed that there might be an undiscovered physical cause and favoured physical treatments, despite unsuccessful multiple past physical investigations and managemenl. They claimed that they had been offered little information by medica! staff or other health professionals concerning causes and treatment and nothing regarding how they could help. However. a few CGs had positive views concerning psychological contributions to aetiology, the potential value of increased activity and their own contribution to this, but these had not been exploited. Almost all CGs had previously been closely involved in the provision of care for invalids. Care givers were more likely to pursue physical explanations and treatments if pain duration was less than two years and preferred rest for female and older patients. We conclude that CGs lack essential information concerning the causes of chronic pain, its appropriate treatment and their own potential contribution. This may be an important impediment to successful rehabilitation.

INTRODUCTION RECENT reviews 1l-41 have explored the interactions between patients suffering from chronic pain and their family members. Although social support has been described as having a beneficial effect on adaptation to chronic disease, recovery and rehabilitation [ 5 ] , the effect on chronic pain appears to be more complex. There is a close negative association between satisfaction with relationships, the severity of pain behaviour and treatment response [ 6, 71. Patients who perceive the family’s attitude as less supportive, more irritated and upset are more likely to complete treatment [S] . Where there is a high concordance between patients and families regarding the nature of pain problems, the outcome of behavioural treatment is worse

193 These findings are inconsistent with the view that social support always has a beneficial effect on chronic pain and favours an operant conditions model [ lo] Thus, family members who are solicitous, satisfied with their relationships and share the patients’ often inappropriate attitudes may reinforce the patients’ pain perceptions and behaviours. Spouses may be particularly motivated to do so when marital difficulties are a primary problem and pain helps to maintain homeostasis [ 11, 121. Although some chronic pain treatment programmes have emphasized the importance of spouses’ participation in treatment [ 13, 141 , often family members are not

*Senior Lecturer, University of Manchester and Honorary Consultant Psychiatrist, Department of Psychiatry, Manchester Royal Infirmary, Oxford Road, Manchester Ml3 9WL, U.K. tRasearch worker, Department of Psychiatry, University Hospital of South Manchester, Nell Lane, West Didsbury, Manchester M20 SLE, U.K. SConsultant Psychiatrist, Department of Psychiatry, University Hospital of South Manchester. Nell Lane, West Didsbury, Manchester M20 SLE, U.K. aAuthor to whom correspondence should be addressed. 211

S. BENJAMIN er al.

212

included but the effects have not been adequately evaluated [ 151. Despite these findings, little is known about the information possessed by family members concerning their relatives’ pain and their attitudes to it. Rowat and Knafl [ 16 ] found that the majority of spouses expressed uncertainty about the cause of chronic pain, thought they were unable to influence it but believed in a ‘cure’. They concluded that the spouses’ ‘ uncertainty precludes the development of appropriate management and renders the spouse impotent’. Management might be enhanced by providing appropriate information, if it is lacking, and by the modification of inappropriate beliefs. This requires assessment of relatives’ knowledge and beliefs about the causes of pain and its appropriate treatment, and of their sources. We present a pilot study of the information that care givers (CGs) say they receive about the causes and treatment of patients’ pain and of their attitudes and beliefs about future treatment. METHOD

The CGs, who were the principle subjects of this study, were a consecutive series of 34 relatives or close friends who accompanied new out-patients to a pain relief clinic, run by an anaesthetist. They were all closely involved in providing care for the patients, resulting in their presence at the clinic and their availability for assessment. A psychiatric social worker (JM), experienced in work with the families of chronic pain patients, used a structured interview with pre-coded responses to assess the CGs. Items in the interview are summarized in Table I (further details available from SB). Items were selected that reflected the range of experiences, attitudes and beliefs encountered in clinical practice. Comparison of data codings by two independent interviewers, followed by minor modifications to the interview, resulted in complete agreement for subsequent assessments. Inter-rater reliability was not assessed because rating scales were not used. Care givers and patients were separated during their assessments, which took place simultaneously. Independent assessments of the patients were carried out by the research psychiatrist (SL) and included socio-demographic data, details of pain and current psychiatric status, based on the Clinical Interview Schedule (CIS) [ 171 Detailed results of the later will be presented separately [ 181 Subsequently, patients were seen by the anaesthetist responsible for the clinical service, who was blind to the results of the research assessments and made a diagnosis of any physical disorder, based on all available clinical information including previous medical records. TABLE I.-CONTENTS

OF INTERVIEW

Items Demographic data History of present episode History of previous episodes Carers’ attitudes to present illness Information received by carers Carers’ beliefs about future treatment Carers’ beliefs about their role in treatment Carers’ history of prolonged illness Carers’ experience of prolonged illness in others Carers’ training or experience in caring

7 4 7 6 4 8 2 2 5 2

RESULTS

The 34 patients yr). Twelve were retired. Registrar nantly class II (5

(22 women and 12 men) had a median age of 51 yr (range 26-88 employed (four on sick leave), fourteen unemployed and seven General’s socio-economic class distribution [ 191 was predomipatients) and III (9 patients). The median duration of pain was

Beliefs

of care givers

about

chronic

213

pain patients

3 yr (range 3 months-6 yr) for the current episode. The site of pain was focal for 23 patients (commonest sites were back, 6 subjects; lower limbs, 6; abdomen, 4) and diffuse for 11 patients. They had consulted a mean of four medical practitioners as well as ‘alternative’ medical practitioners regarding their current disorder. Eleven subjects had had a total of 19 surgical operations, and most had been treated with analgesics, sedatives and/or antidepressants, nerve blocks and trans-cutaneous nerve stimulators. The anaesthetist diagnosed 15 patients as suffering from organic pathology, definitely or probably related to their pain, and the research psychiatrist diagnosed 13 patients as suffering from DSM-IIIR axis I mental disorders (dysthymic disorders, 10; hypochondriasis, conversion disorder and somatoform pain disorder, 1 each) based on the CIS findings. The CGs included 18 spouses, 6 children, 1 parent, 1 sibling and 2 second degree relatives. In addition there were 6 ‘friends’ - either cohabitees or close neighbours. They were all closely involved in providing care, either alone (N = 21) or jointly (N = 13). There were 18 female and 16 male CGs with median age of 45 yr (range 20-74 yr) and median duration of relationship with the patients of 26 yr (range 253 yr). TABLE II.-CARERS’

BELIEFS ABOUT AETIOLOGY AND INVESTIGATIONS (N = 34)

Undiscovered physical cause Possible psychological contribution Distressing life events in 12 months prior Distressing life events in last 12 months Dissatisfaction with investigations

to onset

Yes

No

14 9 19 20 13

11 22 14 II 13

Uncertain 9 3 1 3 8

Asked their views concerning causes of pain and investigations so far (Table II), two-thirds of the CGs thought a definite or possible undiscovered physical cause of pain required further investigation. Similarly, two-thirds rejected psychological factors as a possible contributant to pain, even though the majority believed that the patient experienced one or more distressing life events (independent of the pain) in the 12 months preceding the onset or exacerbation of pain. Nearly two-thirds were definitely or possibly dissatisfied with investigations to date. Ten CGs had contributed, with the patient, to the initiation of consultations and seven had been the sole initiator. When asked an open-ended question about what future treatment they thought would be most helpful, nearly half the CGs suggested further physical treatments (Table III). Only one suggested a psychological treatment, one suggested increased activity and others expressed uncertainty. In response to a list of possibly helpful treatments, those favoured by most CGs were ‘talking more about problems’, ‘rest’ and ‘diet’ but they were almost equally divided about their potential value and over half thought rest would not be helpful. Although only nine CGs definitely favoured surgery, many more expressed uncertainty, and only six definitely ruled this out. Perhaps surprisingly, more than half thought analgesics would not be helpful. There was little enthusiasm for psychotropic medication. Although the majority was opposed to ‘encouragement to do more for him/herself’, eight were definitely in favour and a further five were prepared to consider this. When asked an open-ended

214

S. BENJAMIN

TABLF: III.-CARERS‘ OPINIONS ABOUT

ef al.

FUTURE

TREATMENT

‘Would any of the following help?’ Talking more about ‘problems’ Rest Diet An operation ‘Pain killers’ Encouragement to do more for self ‘Nerve tablets’ ‘Should he/she rest as much as possible?’

Yes

No

14 :4 I3 9 S 3 4 I6

I4 I8 :7 6 I9 21 28 II

34)

(N=

‘What sort of treatment do you think would help now?’ Physical Psychological Activity Qther ‘What do you think you can do to help the patient?’ ‘Care’ as much as possible Nothing Encourage to do more Other

16

1 1 !3 18 IO 3 3 Uncertain 6 2 4 I9 5

2 7

question about their own contribution, the majority of responses fell into a ‘caretaking’ category, and most of the remainder felt that they were unable to contribute. Only three suggested that they might be able to help by encouraging the patient to do more. TABLE W--INFORMATION RECEIVED BY CARERS CONCERNING CAUSE AND ,-REATMJ5N.rOF PAIN (N= 34)

Explanation by doctor: No Yes Advice to carer how to help patient: No Uncertain Advice about the value of rest or activity: No Rest Activity Advice from other health professionals No

TABI.E V.-CARERS'

29 5 33 I 32

1 I 34

PREVIOUS EXPERIENCE OF ‘PHYSITAL' ILLNESS (N=

N Serious Physical Physical Carers’ Carets Carers Any of Family

illness/disability in close relatives (> 3 months) care provided for above care of terminally ill relatives prolonged illness (> 3 months) trained in medicine or nursing trained in voluntary health/social work the above members in ‘caring’ professions

23 8 3 :9 4 6 32 13

34)

Beliefs

of care givers

about

chronic

pain patients

215

Asked about information that they received about the cause and treatment of the patients’ pain (Table IV), only five CGs said they had received any explanation from doctors and two of these had been advised about the benefits of rest or activity. None thought that they had definitely been offered advice about how they could help the patient or had been offered any advice by a health-care professional other than a doctor. Finding for the CGs’ previous experience of physical illness in themselves and in others are shown in Table V. Thirty-two had at least one type of the experiences included and half had at least two. In addition, thirteen CGs had close family members in the ‘caring’ professions. Care givers were more likely to favour physical explanations of cause and treatments if the patients’ pain was of relatively short duration (less than 2 yr). These CGs were more likely to believe that there was no psychological cause (chi square = 7.27, 1 degree of freedom, p < O.Ol), that physical treatment was desirable (chi square = 7.03, 1 degree of freedom, p < 0.01) and that ‘talking’ was less likely to be useful (chi square = 7.04, 1 degree of freedom, p < 0.01). Their views were also related to the patients’ age and sex. They considered rest less likely to be helpful for male than female patients (chi square = 5.72, 1 degree of freedom, p < 0.02) and for younger patients (split-half, Mann-Whitney U = 64.0, p < 0.02). Differences for other causes and treatments were not statistically significant. DISCUSSION

Almost all of the patients had chronic pain for which they had previously received intensive physical investigations and a broad range of physical treatments, which had not resulted in sustained improvement. In many cases the nature of any underlying physical pathology appeared obscure. Their referral to the pain clinic was primarily for symptomatic relief and surgery was not considered to be indicated. In these circumstances it was usually inappropriate to anticipate physical investigations or treatment resulting in ‘cure’. However, the majority of CGs expressed definite or possible dissatisfaction with investigations carried out to date, the idea that there might be an undiscovered physical cause and that surgery was or might be inappropriate. Many of the CGs in our study expressed uncertainty regarding further treatment, a finding previously emphasised by Rowat and Knafl [ 161 . Nevertheless, the majority of our subjects appeared to express confident views about causes, treatment, and their own inability to contribute: many appeared to hold strongly inappropriate views. Most appeared to pursue a curative model of treatment and regarded their role as that of ‘protectoradvocate’ [ 161, providing care and often initiating consultations. Many thought the patients should be encouraged to rest as much as possible and not do more For themselves. Thus the majority of CGs, who were all closely involved and likely to have considerable influence on the patients, had attitudes and beliefs which appeared inappropriate both in the light of past experience of that illness episode, and of available evidence favouring the value of rehabilitation and increased mobility for chronic pain patients [20] . We do not have colateral information to support the CGs’ claim to have received no advice from doctors or other health professionals but it appears to be consistent

216

S. BENJAMIN et al.

with our clinical experience. Possibly some CGs had been given information which they had forgotten or actively rejected. Clearly, if information was provided, it had little impact. Despite this lack of information, a substantial minority of our subjects had beliefs which might have facilitated psychological treatments, including active rehabilitation. Nearly a third thought that psychological factors might have contributed and twothirds that distressing life events preceded the onset but many had not made a connection with their potential contribution to pain. Many favoured the use of some sort of psychotherapeutic approach (‘talking more about problems’), eight thought that the patient should be encouraged to do more for himself and three of the CGs saw this as their role. It might have been relatively easy to involve these CGs in a pain rehabilitation programme but this had not been offered to any of the patients. We do not know the extent to which the attitudes of other CGs might have changed if given appropriate information. In addition to the lack of information, their earlier experience of health and care may have contributed to the inappropriate beliefs and attitudes of the majority of CGs. Our data showing a high level of previous experience of illness and physical care provided by these subjects is uncontrolled but similar to other findings [ 2 1 ] . Care givers of patients with pain of relatively short duration are more likely to favour physical causes and treatments and it seems that subsequently they may become disenchanted with this view. Thus it may be easier to involve some CGs in psychologically based treatments at a relatively late stage, even though in other respects prognosis may then seem worse. Care givers are more likely to favour rest for female and older patients and this accords with stereotypes of their needs. This pilot study is based on a sample of CGs attending a pain clinic offering only physical treatments, a common pattern in the U.K. [22]. Care givers of patients attending multidisciplinary clinics offering psychological treatments might show different responses. The sample is relatively small. We included CGs regardless of their relationship to the patient but the impact of significant others may differ according to their gender and marital status [23] , therefore future work should compare spouses of either sex and also parents and children. Socially desirable responses may have resulted in over-presentation of caring attitudes but this seems unlikely as many CGs were overtly critical of medical management. Observation in a naturalistic setting would help to validate the interview finding but they are consistent with our clinical experience. Our findings may be relevant to patients who have a wide range of chronic disorders apart from pain. These issues require further investigation in the course of development of this relatively new field of research, in which this study represents an exploratory early step. Despite these reservations, we offer some tentative conclusions. Doctors and other health professionals should be taught to provide routine information and relevant advice, not only to chronic pain patients but also to closely involved relatives and friends, about the causes and treatment of their disorders. In particular, CGs should be advised about their potential contribution to treatment. This may make a substantial difference to the completion of treatment [ 83 and its outcome [ 9, 241 The most effective methods of providing information need to be determined. In view of their previous experience of care models and the potential gains for both CGs and families [ 111 , appropriate medical advice, if offered to CGs, might not be accepted.

Beliefs

of care givers

about

chronic

217

pain patients

However, a minority of CGs appear to show potentially constructive attitudes which have not been exploited. If advice has been given but rejected, management might then be directed to determining and changing the CGs’ inappropriate expectations and possible tertiary gains. The potential value of such an approach has not yet been adequately assessed. would like to express our thanks and appreciation to Dr T. Young of the Pain Clinic at Manchester Royal Infirmary for their hospitality and cooperation, particularly generous in view of their limited resources.

Acknowledgemenrs-We

and the staff which was

REFERENCES 1. PAYNE B, NORFLEET MA. Chronic Pain and the family: a review, Pain 1986; 26: l-22. In Proceedings of fhe Vrh 2. ROY R. Impact of chronic pain on marital partners: systems perspective. World Congress on Pain, (Edited by DUBNER R, GEBHART GF, BOND MR) pp. 286-297. Amsterdam: Elsevier, 1988. impact. 3. TURK DC, FLOR H, RUDY TE. Pain and families I. Etiology, maintenance and psychosocial Pain 1987; 30: 3-27. 4. VIOLON A. Family etiology of chronic pain. Int J Family Therapy 1985; 7: 235-246. 5. WALLSTON BS, ALAGNA SW, DEVELLIS BM, DEVELLIS RF. Social support and physical health. Health Psycho1 1983; 2: 367-391. 6. FLOR H, TURK DC, SCHOLZ OB. Impact of chronic pain on the spouse: marital, emotional and physical consequences. J Psychosom Res 1986; 31: 63-71. Pain 1987; 7. GIL KM, KEEFE FJ, CRISSONJE, VAN DALFSON PJ. Social support and pain behaviour. 29: 209-217. in a behavioural therapy programme for 8. FUNCH DP. GALE EN. Predicting treatment completion chronic temporomandibular pain. J Psychosom Res 1985; 30: 57-62. of chronic pain. Pain 1980; 8: 163-166. 9. SWANSON D, MARUTA T. The families viewpoint management of chronic pain: a 10. FORDYCE WE, ROBERTS AH, STERNBACH RA. The behavioural response to critics. Pain 1985; 22: 113-125. pain: a study of marital adjustment. II. HUGHES AM, MEDLEY I, TURNER GN, BOND MR. Psychogenic Acra Psych& Scund 1987; 75: 166-170. perspective of pain behaviour in marriage. Inf J Family Ther 1985; 7: 12. ROY R. The interactional

271-283. Methods for Chronic Pain and Illness. 13. FORDYCE WE. Behuviourul 14. SWANSON D, SWENSON WM, MARUTA T, MCPHEE MC. Program program

description

15. FLOR H, TURK DC,

and characteristics RUDY TE.

of patients.

Pain and families

St. Louis: Mosby, 1976. for managing chronic pain. I. Mayo Clinic Proceedings 1976; 51: 401-408. II. Assessment and treatment. Pain 1987; 30:

29-45. 16. ROWAT KM, KNAFL KA. Living with chronic pain: the spouse’s perspective. Pain 1985; 23: 259-271. 17. GOLDBERG D, COOPER B, EASTWOOD MR, KEWARD HB, SHEPHERD M. A standardised psychiatric interview for use in community surveys. Br J Prevenf Sot Med 1970; 24: 18-23. for first 18. BENJAMIN S, LENNON S, GARDENER G. The validity of the General Health Questionnaire stage screening for mental illness in pain clinic patients. Pain, 1991; 47: 197-202. of Occuparions. London: Her 19. OFFICE OF POPULATION CENSUSES AND SURVEYS. Classification

Majesty’s 20. 21.

Stationery

Department,

1980.

FORDYCE W, MCMAHON R, RAINWATER G, et al. Pain complaint - exercise performance ship in chronic pain. Pain 1981; 10: 311-321. EGAN K, IXTLAHAUC R. Role of the chronic pain patient’s spouse in the maintenance

behaviors.

1987; suppl 4: S325. 22. BROOME A, KHORSHIDIAN C. Are clinical 23.

of pain

Pain

psychologists

Sot 1982; 35: 418-420. FLOR H, TURK DC, RUDY TE. Relationships

pain behaviors: 45-50. 24.

relation-

the mediating

role of gender,

MECHANIC D. Illness behaviour, 1977; 165: 79-87.

interested

in chronic

pain? Bull Br Psycho1

of pain impact and significant other reinforcement of marital status and marital satisfaction. Pain 1989; 38:

social adaptation

and the management

of illness. J Nerv Ment Dis

The knowledge and beliefs of family care givers about chronic pain patients.

The knowledge and beliefs of 34 care givers (CGs) of chronic pain clinic patients were assessed regarding the causes of the patients' disorders, the C...
550KB Sizes 0 Downloads 0 Views