Evaluation of counseling services for people with physical disability is still in the early stages of development. One of the difficulties lies in the question of reflexivity in the service in that Patient Satisfaction Questionnaires frequently yield highly positive results as the respondents usually form a self-selected sample. This may lead to the perpetuation of ineffective practices. 1 In addition, adherence to traditional psychodynamic models could make outcome measurement a problematic undertaking as the counselor and the client might not share the goals of therapy. For example, if the counselor believed that adjustment to an acquired physical disability could be achieved only through a bereavement process, but the client was prepared to accept the situation from the outset, the counselor might view the client as needing to deal with denial before progress could be achieved.
Reeve 2 notes that the assumptions of loss and grief lead to pervasive stereotypical ideas of people with acquired disabilities failing to come to terms without counseling. The exact definition of coming to terms, or a measure of the end point by which this might be recognized, is not easily identified in the literature. Fisher and Hanspal 3 were able to show that, in a group of people with amputations, the experience of depression was lower than that assumed to be the base rate in the population, and they concluded that it is difficult to sustain the concept of grief in the absence of depression on objective measures.
Among people with amputations, the most well researched aspect of adjustment seems to be concerned with body image. This in itself is a concept with many different definitions. Although Schoenberg and Carr 4 report that disruption of body image such as may follow from amputation will invariably lead to emotional responses which may be expressed as phantom pain or other somatic symptoms, Stensman 5 was able to show that people with acquired and congenital severe mobility impairment did not show differences in their satisfaction with their body from those with normal mobility. Frank et al. 6 found that older amputees may be more prepared to alter their body images after amputation because of previous adaptation to the ageing process, thus showing less overall distress. Fisher and Hanspal 7 were able to show that body image disruption was an issue in a subgroup of younger people with traumatic amputation, but it was not generally problematic in a population of 107 established limb wearers.
Thus, there remains ambiguity as to the role of counseling and emotional support in facilitating adjustment to amputation. Further exploration of the necessity to define potential sources of distress needs to be undertaken to enable resources to be targeted appropriately and to provide evidence of concerns relevant to the individual without the “burden” of traditional nonempirically based assumptions.
The counseling service in the Disablement Services Center at Stanmore has existed on a one-day-per-week basis for seven years, and approximately 200 patients have been seen. This project was undertaken to explore the nature of emotional problems if presented by these patients and to evaluate the effect of counseling.
Two studies are described; the first is an attempt to categorize emotional reactions to amputation as defined by the patients, and the second evaluates counseling at the primary (first postoperative limb fitting) appointment and at 4 to 6 months into the limb fitting process.
SUBJECTS AND MATERIALS
Counseling is potentially available to all patients attending the Stanmore Disablement Services Center. Information about the counseling service is distributed and patients may request the service themselves or their Rehabilitation Consultant or other members of the team may refer them. Confidential records are kept of the content of sessions, though no attempt has been made at formal discourse analysis, the Counselor recording only what the patient raises spontaneously.
From 1995 to 1999, 133 consecutive patients with amputation referred to the service had at least one counseling session. A large majority of these patients were seen within the first 2 years post amputation. Thirty-three patients raised only practical issues, leaving 100 patients who raised emotional problems. These were 58 men and 42 women, mean age 56.5 years (range, 17–93). Eighty-six (86%) had lower limb amputation and 56 (56%) had vascular illness. The remainder had their amputations because of trauma, tumors, or infections.
The records of the 100 patients who raised emotional problems were scrutinized to assess what problems were most frequently brought out in the counseling session. These were then categorized according to main subject headings and the most frequently raised issues are summarized in Table 1.
In study 2, to assess the impact of counseling on or shortly after the first visit to the Center on the subsequent experience of problems, 134 patients filled in a questionnaire which asked them whether they were worried about various aspects of daily living. Twelve of these questionnaires were inadequately completed, so they were eliminated, which left 122 valid responses. These patients were then contacted again 4 to 6 months later and asked to return a second questionnaire to the Center. Fifty-eight participants (48%) replied. These patients were: 44 (76%) male, 14 (24%) female, mean age, 64 (range, 23–91), mean time from amputation, 2.8 months. Six (10%) had lost one arm, 49 (85%) one leg, and 3 (5%) two legs. The causes of amputation were vascular illness, 23 (40%), diabetes, 21 (36%), trauma, 8 (14%), tumor, 3 (5%), and infection, 3 (5%).
A questionnaire was designed to ask about whether patients experienced problems with:
- doing tasks in the house
- the effect on their relatives
- problems with limbfitting
- phantom pain
- body image
- personal relationships
The response categories were Yes or No.
The patients were also asked whether they wished to see a counselor. After 4 to 6 months the same patients were sent a similar form to return by post to an administrator at the Center. This form included a question on their perceived or predicted usefulness of counseling. In assessing the returned forms, an occasional lack of an entry was assumed to be a negative response.
The recording of issues raised spontaneously by 100 patients during counseling sessions showed that the main emotional problems were depression, which encompassed distress, sleeplessness, and anxiety, raised by 42 (42%), and body image disruption experienced by 20 (20%). Other problems such as recollection of previous difficulties, worries about relationships and sex, and feelings of anger and resentment were raised by fewer patients. These results are summarized in Table 1.
The average ratios between the number of patients raising these problems and the number of times depression and body image disruption were raised were only 1:1.5 and 1:1.6 respectively. Conversely, relationships/sex and anger/resentment, raised by relatively few patients in the sample, were nevertheless raised more frequently, and the ratios between the number of patients and the number of times they occurred were higher than those for the issues more often raised, being 1:2 for relationships/sex and 1:3 for anger/resentment.
Of the patients with emotional problems, 37 (37%) returned for further counseling after the initial session compared to 2 (6%) of those with only practical problems. The percentages of those with emotional problems who returned, allocated according to cause of amputation, site, time since surgery, age, and sex, are summarized in Table 2.
The records of patients returning for further counseling indicate that the most emotionally affected are those amputated on account of tumor (on a small sample) and trauma (including infection) and also included those who are upper limb amputees. Men were less likely to return than women, though there was no significant difference in the ages of the patients seeking further sessions. Results would indicate that in this sample between six months and 2 years is the period when most patients are likely to seek help for emotional problems. The apparently high percentage of patients who returned and who had had amputations more than 10 years previously is not significant, as it relates to only 3 patients who had experienced recent health changes.
Of the122 patients who responded to the questionnaires, 45 patients (37%) initially requested counseling—19 of those 45 (15% of the total 122) later declined....Seventy-seven patients (63%) initially declined—4 of those 77 (3% of the total 122) later requested it.
Finally, 30 patients were counseled following the initial questionnaire. Eighteen (60%) of the patients responded to the follow-up four to six months later, and 40 (43%) of those who were not counseled responded to the follow-up. The perception of the usefulness of counseling is summarized in Table 3.
The aspects of living which worried patients at the initial stage (1st response) and after 4 to 6 months (2nd) are summarized in Table 4.
The response after 4 to 6 months showed that the patients who had been counseled were less worried about undertaking tasks and housing matters than they had been at first, whereas those who had not been counseled expressed greater concern about these issues at the later stage. Phantom pain was felt to be unchanged by those who had counseling but was reported as significantly worse by the other patients. All patients at the follow-up stage indicated greater concern about employment and their prostheses (though initial reactions to prostheses would not have been based on experience). The increase by the counseled was slightly greater than for the rest. Generally, on practical issues, the patients who had been counseled showed better adjustment than did their counterparts (Figure 1).
On the emotional issues of depression, body image, and anger, concern by all respondents showed an increase at the follow-up stage; the increase by the counseled is larger for depression and body image and smaller for anger than were the results for those who were not counseled. For effect on relatives, there was a positive reduction in concern by the counseled and a clear increase by the rest. Conversely, concerns about relationships and sex increased in the counseled and decreased slightly for the rest. The reaction to emotional issues appears mixed, but with a marked preponderance to increased concern at the follow-up stage by both groups (Figure 2).
In Study 2 the relatively low percentage (25%) of patients who opted for counseling showed a limited perceived need for this service within the first few weeks after surgery. This result incorporated a change of mind by 21% of the total who initially requested counseling and by 3% of those who did not, which indicates that there was significant initial uncertainty. The follow-up at 4 to 6 months showed that the perception of the value of counseling by those who experienced it was high, so there is clearly a perceived benefit to patients from the counseling process. Of those who were not counseled 53% later considered that it would have been of some value which may indicate a failure to predict, soon after surgery, the emotional distress that may follow.
In Study 1, the issue raised by the largest number of patients, and also that raised the most frequently, was depression, which, in this context, encompassed distress, sleeplessness, and anxiety. However, only 42 (42%) of the patients raised this, which indicates that amputation is not damaging to emotional well-being in the majority of cases even though they were selected in the first place because of experiencing at least one emotional problem listed in Table 1. The second most frequently raised problem was body image, raised by one in five patients. This again shows that this is not a problem that afflicts all those who lose limbs, though it should be noted that this study does not measure the intensity of feeling experienced by those suffering emotional problems. The difference in ratios between the number of patients raising the problems and the number of times they were raised between depression and body image on the one hand and relationships/sex and anger/resentment on the other showed that these latter problems may be more persistent than the more commonly raised ones.
In this study it appears that patients who had lost an arm and those whose amputations were caused by tumor and trauma (including infection) were shown to be the most vulnerable to emotional disruption on the assumption that those who return after the first session have the greatest need.
Complaints of emotional distress in the early stages of rehabilitation seemed to be most apparent some 6 to 24 months after surgery, possibly because the initial frequency of hospital attendances have reduced as have some of the support from friends and relatives. This time period was confirmed by study 2 since problems seemed to be more apparent at the 4 to 6 month period. This also indicated that counseling at the primary stage did not appear to reverse the trend, although practical matters such as concern about daily tasks and housing may have been alleviated by early counseling.
There is support for the theory that those who received counseling showed greater distress than the uncounseled group at the start, and they might indeed have shown even steeper increases without intervention, as suggested by Richardson et al. 8 The significant increases in concern over effect on relatives and phantom pain by those who were not counseled may indicate that discussion of these problems reduced the impact in the counseled group. However, those who elected for counseling recognized more concern over their issues at an earlier stage after surgery. There is a consistent lower baseline rate of concern for every issue (except employment where the difference is negligible) in those who did not opt for counseling. This may indicate that those who accept counseling have a greater awareness of the impact of amputation and indicates a degree of self-selection following some initial uncertainty.
The high levels of perceived and predicted benefits of early counseling, and its apparent contribution to the reduction of practical problems, suggests that the opportunity should be available to all interested patients, while recognizing that the main emotional impact may emerge some months after surgery.
The authors would like to thank the patients who provided the information for this project and the staff of the Center, in particular, Sue Walker, for administrative help. The authors would also like to thank to Margaret Piper for preparation of the manuscript.