188
HEALTH AND SOCIAL WORK
Group Therapy with Multiple Sclerosis Couples PAMELA G. WITTE AND LYNN BAKER
Through the years, social work and nursing have developed a cooperative interest in providing comprehensive patient care. This includes a concern not only for the patient's physical symptoms but also for his social and emotional status, his family, and the community in which he lives. 1 This orientation is especially valuable when dealing with patients who are faced with sudden physical disability or chronic or terminal illness. Multiple sclerosis (MS) is a debilitating and unpredictable disease that has no known cause or cure. The MS patient is unsure what the course of the illness will be, whether permanent damage will result, and whether any treatment will be beneficial. Because these uncertainties affect the patient's day-to-day family life, medical and social service intervention should include the spouse as wel1. 2 With this realization, the mental health division and the public health nursing division of the DuPage County Pamela G. Witte, MSW , is Director, Social Service Department, Home Health Agency of Olympia Fields, Illinois. Lynn Baker, MSN, is a public health nurse, DuPage County Health Department, Addison, Illinois.
PROGRAM NOTES
189
Health Department in Addison, Illinois, experimented with providing multidisciplinary group therapy to the MS patient and his family. Interest expressed by the patient's spouse, the significant lack of services geared to the family of the MS patient, the health department's mandate to offer comprehensive care on both preventive and educational levels, and the proved value of joint nursing—social service intervention all provided the impetus for undertaking this project.3 Group work was chosen in preference to individual treatment because it allowed peer support and problem-solving mechanisms in addition to providing education through discussion.4 Treatment goals for the group included the following: (1) increasing and broadening the couples' knowledge of multiple sclerosis, (2) assisting couples to focus on the patient's abilities rather than on his disabilities, (3) broadening the couples' social involvement and use of community resources, (4) increasing the self-sufficiency, independence, and self-esteem of the patient, (5) improving communication between the patient and his or her spouse and helping them in their joint role as parents, and (6) assisting couples to express their feelings in order to work through the grief process. Couples were referred to the group leaders from the case loads of the public health nurses. Husband and 1 Elizabeth P. Rice, "Medical and Health Services," in Encyclopedia of Social Work (New York: National Association of Social Workers, 1965), pp. 470-475. 2 C. A. Kisly, "Striking Back at Stroke," Hospitals, 47 (November 1973), pp. 64-72. 3 Stanley P. Yolles, Foreword to Gerald Caplan, The Theory and Practice of Mental Health Comultation (New York: Basic Books, 1970), pp. vii-x; and R. A. Perkins, J. B. Parker, and B. M. Daste, "Multiple-Influence Paradigms in Illness," Social Casework, 56 (November 1975), pp. 531-537. 4 Rice, op. cit.
190
HEALTH AND SOCIAL WORK
wif e were seen together for pregroup interviews. Among the criteria both for referral and group membership were that the diagnosed patient be married and attend meetings with his or her spouse and that patients be in touch with reality and be able to verbalize intelligibly. In addition, it was thought important that the couples realize that they needed help in broadening their knowledge of the progression of the disease and in adjusting to the disability and to the accompanying changes in role. Contracts were drawn up for 12 weekly sessions, and participants had the option to renew. Only one referred client was excluded and that was because of her psychotic condition. The group included three women and two men with multiple sclerosis and their spouses. The authors—a public health nurse and psychiatrie social workerserved as coleaders. The age range of the clients was from 30 to 38 years and the duration of the illness had been from 6 months to 10 years. All the couples had children who ranged in age from 3 to 16. With the exception of one male patient who had only recently been diagnosed, all had observable motor difficulties. GROUP SUPPORT
The primary focus of the first group session was on establishing relationships among the participants and explaining the general purposes of the group. As Mally and Strehl observed previously, this meeting forced participants to confront the realities of the disease. 5 5 Mary A. Mally and Charles B. Strehl, "Evaluation of a Three-Year Group Therapy Program for Multiple Sclerosis Patients," International Journal of Group Psychotherapy, 13 (July 1973), pp. 328-334.
PROGRAM NOTES
191
Group members spent the first session surveying the others, showing nonverbal signs of discomfort and a reluctance to talk. When members did begin to talk, the patients spoke of the diagnosis and the onset of the disability. Spouses alluded to a number of financial and emotional stresses. No one, however, expressed his feelings directly. When the level of anxiety seemed to rise, members began asking numerous questions about the physical aspects of the disease. These questions took the form of an unvarying ritual. At the onset of each meeting, one member would, without fail, initiate one or more questions and then turn to the nurse for an evaluation or response. To move the group beyond this level, as well as to further their knowledge of the physiological aspects of multiple sclerosis, the group leaders decided to spend three sessi-ons discussing such topics as the general statistics of the disease, changes in the nervous system, signs and symptoms, diagnosis, treatment, causes, course of the disease, factors precipitating exacerbations, sexual changes, problems in elimination, and nutrition and hygiene. Structuring the sessions in this way helped members to further relationships, increase their involvement, and shift the focus of the group beyond discussion of the physical aspects of the disease. One issue that emerged from these discussions was the patient's acceptance of his or her illness. For one woman, a cceptance of multiple sclerosis came only when she was confined to a wheelchair. Loss of independence, the revocation of his driver's license, and recent unemployment made one man confront the realities of the disease. Another woman only accepted the diagnosis when her physician recommended a tubal ligation. Having to undergo this medical procedure
192
HEALTH AND SOCIAL WORK
made the patient recognize that she was at the end of her child-bearing years and the inherent pleasures motherhood had given her. Discussion of such concerns precipitated a host of reactions that had to be dealt with by the group as a whole. These included depression on the part of patients over the loss of their physical ability to function, anger and resentment about their stigmatized condition, low self-esteem because of their altered body image, and hopelessness over the chronic nature of the disease. Mrs. D had had the tubal ligation some years before, but she and her husband still harbored unresolved feelings because of their religious beliefs. To resolve the issue, the coupje used the group for support and to help them come to terras with the positive ramifications of the medical procedure. In contrast, Mr. W verbalized his resentment over Mrs. W's strong religious objections to any form of birth control and her present inability to care for her five children. Whereas the spouses of some patients offered support, others revealed feelings of anger and helplessness toward their mates and appeared especially frustrated with the patient's physical complaints and their own inability to alleviate his or her distress. The group spent some time clarifying patients' complaints and the couples' expectations of one other. Patients voiced their embarrassment about being in public places—even many years after the onset of multiple sclerosis—and feared that their spouses were similarly embarrassed. The spouses, however, denied this feeling and insisted on their need for companionship and family activities. An interesting issue that the group helped resolve for Mr. P, a recently diagnosed MS patient, concerned
PROGRAM NOTES
193
his inability to clarify his illness to his 5-year-old daughter. At the same time, Mr. P withdrew from all social activities, saying nothing to the child but "We can't go because Daddy is sick." The group confronted him and pointed out that his refusal to explain could provoke anger and anxiety in the child, some of which was already evident. Mr. P continued to refuse, however, stating his belief that by explaining he would be burdening a child with adult problems. The group again confronted him, pointing out that multiple sclerosis was not an adult problem but a family probIem. In addition, the group was supportive and provided Mr. P with suggestions on how best to explain MS to the child. The daughter's anxiety lessened after discussion of the matter, and, at the same time, Mr. P began focusing on his strengths and became less withdrawn. A major effort on the part of the group leaders was to help patients increase their self-sufficiency as well as to emphasize their abilities rather than their disabilities. Group time was spent in identifying requests that patients made on members of the family that they could, in f act, have handled independently, as well as in recognizing the difficulties patients had because of their physical limitations. DISCUSSION
Group members contributed positive feedback regarding this 12-session program. They mentioned their interest in the program's continuation and expressed the wish that such a group had existed when the condition was first diagnosed. This raises the question of whether such groups should be provided for couples in the early
194
HEALTH AND SOCIAL WORK
stages of the disease. On the premise that a diagnosis of a chronic, irreversible disease could precipitate crisis, it appears certain that groups such as these have value.° In reviewing the group's overall structure it appears that the spouses' involvement had numerous advantages. Without them, such issues as the patients' unrealistic fears of their spouses' embarrassment could not have been explored. In addition, the group experience gave spouses the opportunity to share mutual problems and to obtain support from people outside their family constellation. Because of the number of responsibilities he or she handled, in addition to the expectations other family members had, it occasionally appeared that it was the spouse and not the patient who was most in need. To increase the patients' self-esteem and to meet the social needs of their families, activities were set up and couples were asked to choose one activity to attend during the coming week. These included picnics, a backyard barbecue, a theater party, and the like. Patients were also urged to pursue such independent activities as involvement in the MS society's swimming program, daily physical therapy exercises, and weekly appointments with a hairdresser. Not only did the family respond positively to such events, but the patients gained a sense of mastery in handling these activities. The group leaders thought that there was a definite advantage in having a nurse and social worker act as cotherapists, because of their ability to see the total person. This meant that they looked at the patient's personal, physical, and psychological well-being, in addi° Donna C. Aguilera, Janice M. Messick, and Marlene S. Farrell, Crisis Intervention: Theory and Methodology (St. Louis, Mo.: C. V. Mosby Co., 1970), pp. 73-77.
PROGRAM NOTES
195
tion to the adjustment of other members of the family. The nurse's experience was valuable in that she was able to provide information about the disease and define realistic goals for the patients. The social worker's involvement facilitated the group process and her experience was valuable in dealing with disturbed patients or family members. Some of the literature on MS groups indicates that patients tend to build a defense against their feelings of anxiety with denial, projection, and apparent indifference or resistance.7 Although these defense mechanisms were frequently present, they seemed no more prevalent than in other therapy groups. In addition, this group had the benefit of an ongoing public health program that provided nursing care in the patient's home. When the group terminated, leaders gave each nurse a summary of the couple's progress along with suggestions for continued treatment. Based on the feedback group participants have given, the authors believe the group met its goal of helping couples to deal more effectively with the complexities of multiple sclerosis. Further thought must be given to expanding and evaluating such programs for MS patients and their families
7 M. Day, E. Day, and R. Hermann, "Group Therapy of Patients with Multiple Sclerosis," Archives of Neurology and Psychiatry, 69 (February 1953), pp. 193-196; and Mally and Strehl, op. cit.
HEALTH AND SOCIAL WORK
Group Therapy with Multiple Sclerosis Couples PAMELA G. WITTE AND LYNN BAKER
Through the years, social work and nursing have developed a cooperative interest in providing comprehensive patient care. This includes a concern not only for the patient's physical symptoms but also for his social and emotional status, his family, and the community in which he lives. 1 This orientation is especially valuable when dealing with patients who are faced with sudden physical disability or chronic or terminal illness. Multiple sclerosis (MS) is a debilitating and unpredictable disease that has no known cause or cure. The MS patient is unsure what the course of the illness will be, whether permanent damage will result, and whether any treatment will be beneficial. Because these uncertainties affect the patient's day-to-day family life, medical and social service intervention should include the spouse as wel1. 2 With this realization, the mental health division and the public health nursing division of the DuPage County Pamela G. Witte, MSW , is Director, Social Service Department, Home Health Agency of Olympia Fields, Illinois. Lynn Baker, MSN, is a public health nurse, DuPage County Health Department, Addison, Illinois.
PROGRAM NOTES
189
Health Department in Addison, Illinois, experimented with providing multidisciplinary group therapy to the MS patient and his family. Interest expressed by the patient's spouse, the significant lack of services geared to the family of the MS patient, the health department's mandate to offer comprehensive care on both preventive and educational levels, and the proved value of joint nursing—social service intervention all provided the impetus for undertaking this project.3 Group work was chosen in preference to individual treatment because it allowed peer support and problem-solving mechanisms in addition to providing education through discussion.4 Treatment goals for the group included the following: (1) increasing and broadening the couples' knowledge of multiple sclerosis, (2) assisting couples to focus on the patient's abilities rather than on his disabilities, (3) broadening the couples' social involvement and use of community resources, (4) increasing the self-sufficiency, independence, and self-esteem of the patient, (5) improving communication between the patient and his or her spouse and helping them in their joint role as parents, and (6) assisting couples to express their feelings in order to work through the grief process. Couples were referred to the group leaders from the case loads of the public health nurses. Husband and 1 Elizabeth P. Rice, "Medical and Health Services," in Encyclopedia of Social Work (New York: National Association of Social Workers, 1965), pp. 470-475. 2 C. A. Kisly, "Striking Back at Stroke," Hospitals, 47 (November 1973), pp. 64-72. 3 Stanley P. Yolles, Foreword to Gerald Caplan, The Theory and Practice of Mental Health Comultation (New York: Basic Books, 1970), pp. vii-x; and R. A. Perkins, J. B. Parker, and B. M. Daste, "Multiple-Influence Paradigms in Illness," Social Casework, 56 (November 1975), pp. 531-537. 4 Rice, op. cit.
190
HEALTH AND SOCIAL WORK
wif e were seen together for pregroup interviews. Among the criteria both for referral and group membership were that the diagnosed patient be married and attend meetings with his or her spouse and that patients be in touch with reality and be able to verbalize intelligibly. In addition, it was thought important that the couples realize that they needed help in broadening their knowledge of the progression of the disease and in adjusting to the disability and to the accompanying changes in role. Contracts were drawn up for 12 weekly sessions, and participants had the option to renew. Only one referred client was excluded and that was because of her psychotic condition. The group included three women and two men with multiple sclerosis and their spouses. The authors—a public health nurse and psychiatrie social workerserved as coleaders. The age range of the clients was from 30 to 38 years and the duration of the illness had been from 6 months to 10 years. All the couples had children who ranged in age from 3 to 16. With the exception of one male patient who had only recently been diagnosed, all had observable motor difficulties. GROUP SUPPORT
The primary focus of the first group session was on establishing relationships among the participants and explaining the general purposes of the group. As Mally and Strehl observed previously, this meeting forced participants to confront the realities of the disease. 5 5 Mary A. Mally and Charles B. Strehl, "Evaluation of a Three-Year Group Therapy Program for Multiple Sclerosis Patients," International Journal of Group Psychotherapy, 13 (July 1973), pp. 328-334.
PROGRAM NOTES
191
Group members spent the first session surveying the others, showing nonverbal signs of discomfort and a reluctance to talk. When members did begin to talk, the patients spoke of the diagnosis and the onset of the disability. Spouses alluded to a number of financial and emotional stresses. No one, however, expressed his feelings directly. When the level of anxiety seemed to rise, members began asking numerous questions about the physical aspects of the disease. These questions took the form of an unvarying ritual. At the onset of each meeting, one member would, without fail, initiate one or more questions and then turn to the nurse for an evaluation or response. To move the group beyond this level, as well as to further their knowledge of the physiological aspects of multiple sclerosis, the group leaders decided to spend three sessi-ons discussing such topics as the general statistics of the disease, changes in the nervous system, signs and symptoms, diagnosis, treatment, causes, course of the disease, factors precipitating exacerbations, sexual changes, problems in elimination, and nutrition and hygiene. Structuring the sessions in this way helped members to further relationships, increase their involvement, and shift the focus of the group beyond discussion of the physical aspects of the disease. One issue that emerged from these discussions was the patient's acceptance of his or her illness. For one woman, a cceptance of multiple sclerosis came only when she was confined to a wheelchair. Loss of independence, the revocation of his driver's license, and recent unemployment made one man confront the realities of the disease. Another woman only accepted the diagnosis when her physician recommended a tubal ligation. Having to undergo this medical procedure
192
HEALTH AND SOCIAL WORK
made the patient recognize that she was at the end of her child-bearing years and the inherent pleasures motherhood had given her. Discussion of such concerns precipitated a host of reactions that had to be dealt with by the group as a whole. These included depression on the part of patients over the loss of their physical ability to function, anger and resentment about their stigmatized condition, low self-esteem because of their altered body image, and hopelessness over the chronic nature of the disease. Mrs. D had had the tubal ligation some years before, but she and her husband still harbored unresolved feelings because of their religious beliefs. To resolve the issue, the coupje used the group for support and to help them come to terras with the positive ramifications of the medical procedure. In contrast, Mr. W verbalized his resentment over Mrs. W's strong religious objections to any form of birth control and her present inability to care for her five children. Whereas the spouses of some patients offered support, others revealed feelings of anger and helplessness toward their mates and appeared especially frustrated with the patient's physical complaints and their own inability to alleviate his or her distress. The group spent some time clarifying patients' complaints and the couples' expectations of one other. Patients voiced their embarrassment about being in public places—even many years after the onset of multiple sclerosis—and feared that their spouses were similarly embarrassed. The spouses, however, denied this feeling and insisted on their need for companionship and family activities. An interesting issue that the group helped resolve for Mr. P, a recently diagnosed MS patient, concerned
PROGRAM NOTES
193
his inability to clarify his illness to his 5-year-old daughter. At the same time, Mr. P withdrew from all social activities, saying nothing to the child but "We can't go because Daddy is sick." The group confronted him and pointed out that his refusal to explain could provoke anger and anxiety in the child, some of which was already evident. Mr. P continued to refuse, however, stating his belief that by explaining he would be burdening a child with adult problems. The group again confronted him, pointing out that multiple sclerosis was not an adult problem but a family probIem. In addition, the group was supportive and provided Mr. P with suggestions on how best to explain MS to the child. The daughter's anxiety lessened after discussion of the matter, and, at the same time, Mr. P began focusing on his strengths and became less withdrawn. A major effort on the part of the group leaders was to help patients increase their self-sufficiency as well as to emphasize their abilities rather than their disabilities. Group time was spent in identifying requests that patients made on members of the family that they could, in f act, have handled independently, as well as in recognizing the difficulties patients had because of their physical limitations. DISCUSSION
Group members contributed positive feedback regarding this 12-session program. They mentioned their interest in the program's continuation and expressed the wish that such a group had existed when the condition was first diagnosed. This raises the question of whether such groups should be provided for couples in the early
194
HEALTH AND SOCIAL WORK
stages of the disease. On the premise that a diagnosis of a chronic, irreversible disease could precipitate crisis, it appears certain that groups such as these have value.° In reviewing the group's overall structure it appears that the spouses' involvement had numerous advantages. Without them, such issues as the patients' unrealistic fears of their spouses' embarrassment could not have been explored. In addition, the group experience gave spouses the opportunity to share mutual problems and to obtain support from people outside their family constellation. Because of the number of responsibilities he or she handled, in addition to the expectations other family members had, it occasionally appeared that it was the spouse and not the patient who was most in need. To increase the patients' self-esteem and to meet the social needs of their families, activities were set up and couples were asked to choose one activity to attend during the coming week. These included picnics, a backyard barbecue, a theater party, and the like. Patients were also urged to pursue such independent activities as involvement in the MS society's swimming program, daily physical therapy exercises, and weekly appointments with a hairdresser. Not only did the family respond positively to such events, but the patients gained a sense of mastery in handling these activities. The group leaders thought that there was a definite advantage in having a nurse and social worker act as cotherapists, because of their ability to see the total person. This meant that they looked at the patient's personal, physical, and psychological well-being, in addi° Donna C. Aguilera, Janice M. Messick, and Marlene S. Farrell, Crisis Intervention: Theory and Methodology (St. Louis, Mo.: C. V. Mosby Co., 1970), pp. 73-77.
PROGRAM NOTES
195
tion to the adjustment of other members of the family. The nurse's experience was valuable in that she was able to provide information about the disease and define realistic goals for the patients. The social worker's involvement facilitated the group process and her experience was valuable in dealing with disturbed patients or family members. Some of the literature on MS groups indicates that patients tend to build a defense against their feelings of anxiety with denial, projection, and apparent indifference or resistance.7 Although these defense mechanisms were frequently present, they seemed no more prevalent than in other therapy groups. In addition, this group had the benefit of an ongoing public health program that provided nursing care in the patient's home. When the group terminated, leaders gave each nurse a summary of the couple's progress along with suggestions for continued treatment. Based on the feedback group participants have given, the authors believe the group met its goal of helping couples to deal more effectively with the complexities of multiple sclerosis. Further thought must be given to expanding and evaluating such programs for MS patients and their families
7 M. Day, E. Day, and R. Hermann, "Group Therapy of Patients with Multiple Sclerosis," Archives of Neurology and Psychiatry, 69 (February 1953), pp. 193-196; and Mally and Strehl, op. cit.
