group services for the chronically ill and disabled

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GROUP SERVICES FORTHE CHRONICALLY ILLAND DISABLEDJoan K. Parry aa Hunter College School of SocialWorkPublished online: 05 Nov 2010.

To cite this article: Joan K. Parry (1980) GROUP SERVICES FOR THECHRONICALLY ILL AND DISABLED, Social Work with Groups, 3:1, 59-67,DOI: 10.1300/J009v03n01_08

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GROUP SERVICES FOR THE CHRONICALLY ILL AND DISABLED

Joan K. Parry

ABSTRACT. The lives of chronically ill parienrs are marked by dev- as tor in^ changes for both lhemselves and theirfumilies. Physical illness /ha! can cause death ond disabililv is an overwhelminp crisis for rhe hospilalized patient. People experiencing multiple deficits in,functionin~ can cope better with physicolslress when they are involvedin dgroup wirh peers who areexperiencingsimilarproblems. Fear, regression, andstigma can bedealt with in /he orrepring atmosphere of o group where the commonulity of experience and informal supports enable individuals lo examine ~he/ullromificorion r~flheir condition.

This paper encompasses lileralure reloted lo liospilal prorips und describes some hospilal groups briefly. Thepaper examinesin greolerdeplh /he relorionship of group.^ lo chronic disease ondhowsuchser~~icescan assistpalientscoping wilh Iheday-lo-dayproblcmsofchronicillness.

INTRODUCTION The concept of socialization groups, ward morale

groups, intake groups, and adjustment groups for mentally and physically ill members in institutions has been examined extensively in the literature [3,7,8,13,15,16,19]. The specificity of group work to diagnostic categories goes back to the late 1940s and early 1950s and is often related to treatment of aphasia [5, 8,451. Group work with cardiacpa- tients, group work with the blind, and, more recently, group work with hypertensive patients, burn patients, stroke patients, renal dialysis, and sickle cell anemia patients have been described in the literature [2, 9,22,34].

There has been much concern with the physical and psychological problems of chronic illness and the rehabilitation processI1, 10,1< 24, 25,38,43]. While regression is sometimes helpful in acute illness, it be-

Joan K. Parry is currently a faculty member at Hunter College School of Social Work, and was formerly the Director o f the Social Work Department, Community Hospital, Glen Cove, NY. A revised version ofthis paper was prcsenled at the International Con- ferenceof Health Education in Ottawa. Canadain August, 1976.

W a l Work wilh Oroupr. Val. ;(I). Spring 1980 O 1980 by me Hawonh Prar. All rishlr rwwed.

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60 SOCIAL WORK WITH GROUPS

comes maladaptive in chronic illness. The secondary gains achieved by giving up adult responsibilities become very tempting to the chronically ill person. Interventions into these regressive patterns can signifi- cantly effect the eventual integration of the disabled into the community. Group work services offer amethod of intervention that is produc- tive from the time that acute illness subsides until the patient is able to maintain theoptimum health within theconstraints of his disability.

EXCERPTS FROM GROUP MEETINGS A group work program with hospitalized rehabilita-

tion patients has pursued the above methodology with great success.* In early meetings, in-patient group members were able to express feelings of fear, confusion, anger, frustration, and depression at what had happened to them. They were able to focus on the isolation caused by seeing themselves as being (and perhaps remaining) "cripples" and dependent. Each patient had experienced these feelings. However, until members had the group as a forum, they were ashamed or afraid to express such feelings to family or staff.

Joe verbalized his feelings of depression, guilt, and unworthiness. Shirley told him we all have our ups and downs and encouraged him not to give up as she once had. The group as a whole came to Joe'ssupport, and finally helaughedand said "let'sgoon," breaking the tension.

In addition to the formation of a mutual aid network, the group of- fered the opportunity for socialization and easing the reentry process into the community.

Discharged patients often return for weekly group meetings at the hospital and have a powerful impact on newly diagnosed stroke patients.

The social worker iaid. "We have an expert with us today. Joe L. went home last Friday, so he can tell us first hand what it's like to leave the hospital." "lt's great." he said. and everyone nodded andlaughed. "The best thing ahout it issleeping In yourown bed with nobody snoringall night long."

Al, another former in-patient, said, "lt's the retirement that gets me." The men talked about how hardit is to adjust when you are uied to working.

The interaction of the in- and out-patients becomes a powerful asset

"Community Hospital at Glencove isa275 bedshort-lerm general hospital that wvesas themajor facility for anareaof approximately 1CO.QGQpopulation.

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Joan K. Parry 61

for physical therapists, speech therapists, nurses, and physicians in facilitating rehabilitation.

In group meetings, in-patients can interact with people who have been through the same experience. They can observe others who walk with only minimal assistance and speak when they had previously been aphasic. This becomes an important piece of the life-sustaining dimen- sion of health care.

The Social Work Department was also concerned about the problems emphysema patients were having managing their disease. The emphysema victims' social dislocation was exacerbated by both the disab- ling nature of the illness and their enforced isolation (caused by their dependence on their machines).

Charlie brought up panicking due to not being able locatch your breath and members agreedthar i f you had not experienced it, there was no way to really understand the feeling. Parenthetically, no professional could have previewed the same kind of knowing support. Charlie said the closet youcouldcome tothe feeling was toimaginedrowning.

Ollie said that it's especially hard when you have emphysema as it prevents you from doing so many lhings.

Group work services not only helped patients manage their illness, but also provided other needed supports.

Subsequently, other groups were started for hypertensive patients and diabetic patients. The hypertension group is composed of working people with occasional hospitalizations who meet weekly during the evening. The diabetic group is much more disabled with a considerable incidence of blindness and loss of limbs. These members are not in the work force and meet weekly during the day.

In all groups, relatives are urged to attend the group meetings. It is very important for families to be involved in the process of shared feelings, learning about the illness itself and various ways to deal with the illness at home and in the community.

Breathing exercises and postural drainage weredemonstrated. Postural drainage had lo be done for the patient. This seemed to bea particular causeofconcern for Joe whoseemsto feel that he's a burden on his family. Other family members there said they could all do it. Gladys and Julie mentioned how helpiess they felt as family members-particularly when their husbands were in theemergency room and thestaff never told them what wasgoing on.

All members of the health team who are involved with patients having specific chronic illnesses, make a special effort to educate families about the illness and treatment that may be necessary for the patient to

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maintain optimum health when he/she leaves the hospital. There are occasions when the diagnosed member's spouse, minor or adult child, adult siblings, or other "significant other" in the member's family comes to a group meeting without the disabled person. This k n o t encouraged on a regular basis. The group's purpose is clearly identified as incorporating the interactive needs of the disabled "patient and family'' together and not the family alone.

THE MEANING OF GROUP SERVICES IN CHRONIC ILLNESS The rapidity and insistency of change in our society

has been well documented, and we have all experienced it. Those in the population who are chronically ill and disabled are most vulnerable to the demands of change, including its pain. For many, the indetermin- ant piece of chronicity is the most difficult to handle. The chronically disabled individual has to cope with much more than a handicap or a disease process.

Chronic illness is marked by an indeterminateness of closure in the disease process; the undocu- mented nature of costs attendant'to disease reduction or elimination: weak health system ties among organizations serving this group: the interchangeability of treatment sitesand personnel: a strong interplay of medical, social, and cconornic factors: and a pronounced neglect by health personnel [ l l , p . 131.

Chronic illness often results in severe limitations of activity and mo- bility. This means the inability to carry on the usual activity for one's age-sex group, such as working, keeping house, going t o school, rear- ing children, being restricted in the amount and kind of usual activity, or experiencing restriction in relation to other activities [14; 26, p. 611.

Getting together with other people who have similar problems offers informal supports that enable individuals to look at their specific problems more easily [3,9,13]. The group offers the opportunity to explore in a non-threatening environment the impact of their health condition on members' lives [15, 421. Group members realize, perhaps for the first time, that they are not alone with their problems, that other members cope with the same problem that was perceived as unresolvable [19,22]. Another phenomenon that occurs in such a group is the mobil- ization of group effort on behalf of a particular patient who is under- going stress. This, in turn, alerts the social worker, nurse, or other member of the health team to the specific need, and professional input is then lent to the person in need [2] .

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Joan K. Parry 63

The stigma attached to disability whether visible or not has a major impact on individuals who return to their families. As stated, the physically disabled often feel shame and disgrace, while the physically nor- mal feel discomfort being with the physicially disabled and often reject and withdraw from encounters with them [43]. These kinds of problems are more easily dealt with in the accepting atmosphere of a group where the commonality of experience allows the participants t o examine the full ramifications of their disability.

One of the major benefits such a group for chronically disabled can open to its members, is allowing them to come to grips with their feelings, thoughts, fears, and fantasies about death [3, 231. The professional worker uses the special skills needed to deal with such feelings and also to assist with another difficult feeling, that of being "different." Frey points out that in a group there is the chance for people to discover that they are not so ''odd" or different as they think, and the commonality of the experience is a way of universalizing it [13]. One of the major purposes of such a group is to help the members feel as nor- mal as possible within the constraints of the chronic condition or disability.

In physical chronic disability, there is much dependency created. Abrarn points out that the forced dependent position of a patient's illness may make it impossible for him to again be independent, and the regressive, dependent trends become overwhelming [ l , p. 6611. The group focus on peer support and encouragement of concern for each other helps to break down the excessive dependency needs. When a group member can help another member, he is performing an independent action. It is the combination of feeling needed and the need to receive feedback feelings from others that is important in this kind of group.

A significant phenomenon that often occurs among the chronically ill is non-adherence to a medical regimen. This non-adherence can take various forms-from the diabetic who refuses to follow the diet to the emphysema patient who rejects breath-giving machinery. Non-adherence can be caused by denial, anger, acry for help, or a last attempt to withdraw from a painful and seemingly endless situation [I] . In the group, the medical or technical information can be provided by the physical therapist, occupational therapist, speech therapist, respira- tory therapist, nurse, or physician, in conjunction with the social worker and reinforced by group members. One of the major challenges

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for any member of the health team is to encourage the patient to learn self-care and demonstrate that disability does not have to be dysfunc- tional. Self-care taught within the nurturing atmosphere of group members with very similar problems is greatly facilitated.

VALUE OF GROUP WORK SER VICES Physical illness which can cause death, disability,

and become chronic is a crisis for the patient and the patient's family. Social workers in medical hospital settings have traditionally provided individualized services to those patients who were referred in an effort to help them work through their anxiety and make the necessary adjustment to their illness [IS]. There are two questions which underlie the one-to-one approach to a severe physical disease crisis: one is whether the patient will be referred; the other is whether the patient who is referred will accept the service. Berkman and Rehr indicate that the present medical social service case-finding procedures depend heavily on physicians' referral, which then results in a client system based on physician indentification of need. Such a pattern may act to deny service to many patients [6] . There are also those patients who are unable to util- ize individual service because their fear and anxiety lead them to deny the problem or to resort to other forms of resistance [6,9,15].

Both of the above questions are more directly addressed by the pro- vision of group work services to specific diagnostic categories. The referral for service is based on the diagnosis, rather than the physician's need and, in general, physicians, nurses, and other health grofession- als are supportive of thegroup service [3,9,lS].

Chronic diseases tend to result from multiple causes,.some of which are tissue breakdown, trauma, residual effect of acute illness, and un- healthy living patterns. Lydia Rapoport made this observation 15 years ago by pointing out that the search for thecause may be a hopeless pur- suit because most disease states are the indirect outcome of circum- stances rather than the direct result of single determinant factors [29]. The group work method accepts the multiplicity of casuality and is helpful in containing illness along social and economic indices. If the group can help the individual to cope with a particular stress of illness, there is the possibility for resolving the problem in the community rather than the hospital. Woven into the very fabric of the concept of rehabilitation is the goal of return to the community 832). Group work can serve as the linkage for the disabled patients between the hospi- Wmedical systems and the social/community system.

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Joan K. Parry 65

CONCLUSIONS Chronic conditions need to be viewed,in new ways.

Those afflicted cannot be ignored. Health services delivered by interdisci- plinary teams can complement medical treatment and respond to the whole person in his own environment [4, 11, 14, 301. The health of the living is becoming an important measure of the health of a society, and ad- dressing the needs of those with chronic conditions in more holistic ways is to be pursued. Asearly as 1%6 the federalgovernment, through its Center for Health Statistics, noted that the economic and social consequences of illness now receive more attention than formerly in evaluating levels of health and the importance of health problems. The chronic diseases have become relatively more important. Their consequences include not only death, but reduced productivity, prolonged disability, and' the need for care [41]. It is the reduced productivity and continued disability that cause the most severe problems for the afflicted persons. This means that after relief of pain, there is a need for relief from the loneliness, isolation, and uselessness that is an integral part of chronic illness and disability [3, 9, 341.

There has been an increasing realization that health care has to be viewed as a "health service," which takes into account the organiza- tion of medical care for the whole population and the whole person.

If group work services are started on hospital floors to in-patients, then combined with in- and out-patients and subsequently serve the ambulatory patients, the continuity of care theme can be operational- ized. A social-health policy for the chronically ill and the disabled is one'that looks to sustain or restore the individual's capacity for self- sufficiency and self-care; to retard the rate of deterioration in the bio- logical, mental, and social systems on which that capacity depends; and to promote a reasonably independent person in a natural, rather than institutional environment. The after-effects and dislocation of lives caused by chronicity and disability require an imaginative and ex- panding response from the present medical/health care system.

In a society such as the United States which emphasizes health, youth, and vitality. and shies away from the sick, especially those for whom there is no hope of cure, the needs of the chronically disabled are extensive. In order to maintain health and to improve the quality of life for chronically disabled persons, many supports from the health delivery system are needed and health professionals need to develop better collaborative modes of service delivery. Group work services is a com- ponent as well as an integral part of service delivery and, as such, is an

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effective way of involving separate allied health professionals in com- mon work on behalf of patients. The group mechanism helps chronically ill people to accept and then cope with their disability, and move toward once again becoming constructive socially functioning individuals.

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group services for the chronically ill and disabled

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