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Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20
SOCIAL WORK PRACTICE AND CHRONIC PEDIATRIC ILLNESS a
b
Anne S. Bergman LCSW, MPH , Norman J. Lewiston MD & Aleda M. West MSW
c
a
Director of Social Services, Children's Hospital at Stanford, Palo Alto, CA, 94304 b
Chief, Allergy Pulmonary Disease Service, Children's Hospital at Stanford c
Oncology Social Worker, Children's Hospital at Stanford Published online: 26 Oct 2008.
To cite this article: Anne S. Bergman LCSW, MPH , Norman J. Lewiston MD & Aleda M. West MSW (1979) SOCIAL WORK PRACTICE AND CHRONIC PEDIATRIC ILLNESS, Social Work in Health Care, 4:3, 265-274, DOI: 10.1300/J010v04n03_02 To link to this article: http://dx.doi.org/10.1300/J010v04n03_02
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/ page/terms-and-conditions
SOCIAL WORK PRACTICE AND CHRONIC PEDIATRIC ILLNESS
Downloaded by [University of Glasgow] at 04:53 20 December 2014
Anne S. Bergman, LCSW, MPH Norman J. Lewiston, MD Aleda M. West, MSW
ABSTRACT. The role of social workers in a pediatric chronic illness setting is presented. The difference between acute and chronic illness is explored, with emphasis on the ramifications of these differences for social work pmctice. Early assessment ofpatients and families provides the social worker with a data base from which to select an appropriate intentention with families. Ofprimary importance is the amelioration of feelings of helplessness, dependency, and isolation This may be accomplished by helping families anticipate problems, mobilizing resources to help, and encoumging families to share their experiences with other families. Because the medical system, particularly in a teaching hospital, may not provide continuity of care for patients, the rekitionship of the social worker to patient and family, and resulting knowledge of the family, becomes an important resource in the provision of high-quality care.
Much has been written about the role of social workers in various settings. There has been ongoing discussion about the "mission" of social work. Most recently an entire issue of Social Work (September 1977) was devoted to conceptual frameworks and a discussion of purpose. Scott Briar noted a t the meeting reported on that the "inescapable conclusion a t this time in the history of social work is that there is not a widespread consensus about the profession's mission and purpose." For social workers not in primarily mental health or social welfare settings, this mission appears to be particularly clouded. In the medical setting, starting from Dr. Richard Cabot's introduction of the use of social workers into the Massachusetts General Hospital in 1906 to the present, social workers have found themselves torn between the medical model of care and whatever their own professional objectives might be. I n a study undertaken in 1975 by Pfouts and McDaniel(1977,p. 282) it was clear that the most important social work role in the pediatric department of 28 teaching hospitals was the demonstration through direct service. This study apparently supported the data by Ullmann, Ms. Bergman is Director o f Social Services, Children's Hospital at Stanford. 520 Willow Road. Pa10 Alto, California 94304. Dr. Lewiston is Chief. AUergy Pulmonary Disease Service. Children's Hospital at Stanford. Ms. W e s t is former oncology social worker at Children's Hospital a t Stanford. Swiel Work in Healthcare. Vol. 4131. Spring 1979 0 1 9 7 9 by The Heworth Press.AU rights reserved
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Goss, Davis, and Mushinski (1971) which indicated that there was more emphasis on direct service to clients than on other roles such as consultation, teaching, research, or systems change. Mow successful is the demonstration of direct service provided by social workers to patients in a medical setting? I t has been noted by Eleanor P. Soroker (1977) in her "Analysis of Pediatric Outpatient Care" that "even when referrals to the social senrice department were made, they were nonspecific rather than precisely directed at the particular problem observed" (p. 101).In addition, in Ms. Soroker's study of parents' compliance, the large number of return appointments to medical clinics kept by parents reflected this tendency to stress the physical aspects of illness and not recognize the emotion& components. In those cases that were referred to the social service department, only one half o f the parents kept their appointments. When they were interviewed at the time of follow-up, these parents reported that they had not understood the problem and its treatment and did not recall an explanation of the reason for the referral (p. 102)
These studies plus the study by Gentry et al. (1973)all add weight to the evidence that not only are social workers not clear about their mission in medicine but physicians and families are equally unclear. Because of the continuing discussion of the mission of social work, and the fact that social work practice varies from setting to setting, this paper explores some of the characteristics of social work practice in a pediatric setting with chronic disease. This type of practice will then be discussed in the context of the current debate over the mission of social work. CHRONIC ILLNESS IN CHILDREN Chronic illness is defined as a condition persisting for more than 3 months (Green& Haggerty, 1968a).The total cumulative prevalence in children under 18is between 10% and 20% (Green& Haggerty, 1968bk. In spite of the relatively large number of children affected by chronic illnesses, our health care system is primarily oriented toward the care of acute illness. Because of this, children with long-term disease and their parents face certain obstacles in their attempt to receive adequate health care. In recent years, there have been significant changes in the manage ment of children with chronic illnesses. Poliomyelitis and rheumatic fever have virtually disappeared. Many other chronic disorders such as bronchial asthma, rheumatoid arthritis, and cerebral palsy are now treated intensively as outpatient diseases. The children now spend most of their time a t home and in the community-not in the hospital.
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Long-term convalescent hospitals for children are almost extinct. In 1971, the average length of stay a t the Children's Hospital a t Stanford (formerly Convalescent Hospital), a hospital for chronic and catastrophic illness, was 24 days. In 1975, the average length of stay was 9.6 days, and in 1976, 8.21 days, clearly a trend toward shorter inpatient stays. Chronic illnesses are of long duration. Months and years of interactions between a patient, the family, and the health care system may encompass a patient's childhood, adolescence, and adulthood. For the health care system to be responsive to the needs of families over a long period of time is extremely difficult. Most hospitals are oriented exclusively to the care of short-term illness, and outpatient clinics follow patients in an episodic, crisis oriented fashion. In addition, continuity of care is lost because of high turnover of health professionals. Particularly in teaching institutions, the system of rotation from service to service guarantees that a family will have little opportunity to establish a long-term relationship with a physician (Strauss, 1971). The problem in acute illness is proper diagnosis and the delivery of treatment. I t is assumed that the patient will be relatively well within a few days or weeks and will be able to return home and parti$pate in normal activities. Insurance companies are more generous in their coverage of acute illness, and there is little involvement with ancillary medical services. In contrast, chronic illnesses are not cured; they are managed. This creates a special set of circumstances for the patient and the physician which lead to behaviors on the part of both groups that are different from behaviors when a child is acutely ill. Some of the differences between chronic illness and acute illness will be discussed in this paper, with a particular emphasis on the ramifications of these differences for the role of the social worker. SOCIAL WORK SERVICES At the Children's Hospital a t Stanford, social workers are assigned to cover one or more services. Each social worker, in essence, becomes an expert on the impact of a given illness on both families and staff working with it. In an academic system where rotation of medical staff is the rule, frequently the only two persons on a service who are able to provide continuity of care to patients are the medical service chief and the social worker. One of the major functions of the social worker is the psychosocial assessment of the patient and his or her family. The social worker routinely explores with each new family a t an appropriate time after the diagnosis:
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1. Family structure and relationships: (a)stability of family relationships; (b) relationship between parents; (c) relationship between siblings; (d)availability of extended family and other supportive persons; (e) family attitude toward illness; (f) understanding of illness; and ( g ) past experience with illness. 2. For the patient: (a)prognosis; (b)age at diagnosis; (c)restrictions in activities; (d) impact on school experiences; (e) degree of pain; (f) spent in the hospital; and (g)premorbid personality of the child.
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A noteis placedin thechart for twopurposes: 1.To help the physician understand the patient better and to tailor a treatment plan that will be most acceptable. 2. To help the social worker determine how well the family members may cope with the diagnosis and to determine what would be most helpful to them throughout the course of the illness. Indications for further involvement with the family might be: (a)families expressing a need to be seen; (b) families with few supportive persons available to them (a recent study of satisfaction with social work services a t the hospital revealed that those most satisfied with social work services were those with the fewest community and family supports); (c)farnilies in transition (parents separating, new babies, etc.); (d)families who demonstrate an inability to comply with the medical regimen; (e)families who have previously had bad experiences with a physician; (f) school problems in the child; (g)parents who perceive problems with siblings; and (h)cultural or ethnic barriers to benefiting from medical care.
Typically, spontaneous interviews with parents will be brief and evaluative, allowing patients or parents to ventilate their concerns and helping them anticipate future events. Much anxiety is expressed, particularly around issues of uncertainty about the future, loss of control, and isolation. Support is given to reassure families that their feelings are normal and to be expected. Other issues that are commonly raised by parents are: -How -How -How -How -Mow -How -How
to discipline a sick child. not to spoil the patient. to alleviate the parents' guilt. to handle restrictions in activity of both patient and family. to work with the school system. to handle conflicts between physicians. to find baby-sitters for an ill child.
Anne S. Bergman etal.
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-How to tell family and friends about the illness. -How to pay for medical bills. -How to handle siblings' feelings about the patient's illness. All of the above are considered reasonable and expected issues for parents to raise. Of critical importance is understanding the spectrum of normal responses to the stress of coping with chronic illness, and allowing the family to return to an equilibrium. I t is helpful to view these families as normal families in a process of adjustment to a longterm and frequently unpredictable illness that will have an impact on every aspect of their life. Thus, the social worker is there to help the family members maintain their equilibrium. Feelings of independence and helplessness can be alleviated by helping them anticipate problems and plan for their resolution. Practical factors affecting a social worker's intervention with patients and their families are: (a) where the family resides (many of our patients come from distant counties in California); (b) local alternatives for care; (c)the family's preference regarding the nature and location of intervention; (d) the frequency of the patient's return to Children's Hospital a t Stanford; and (e)physician support of social service intervention. The social worker will either make a scheduled appointment with the patient or, ore frequently, will "drop in" to see the family in the clinic or hospital. This may happen a t the request of a physician, nurse, or other staff member, of may happen because the social worker has reason to believe that the family may be in need of help.
Because of the large number of ancillary services involved in the care of a chronically ill child-from special school settings to vocational rehabilitation counselors-there is a significant coordinating function needed to assure communication and agreement on goals of treatment. Although it is in fact the physician who determines the medical goals, the social worker is the staff member whose responsibility it is to monitor the progress of a patient in areas other than the medical. It is only with both medical and psychosocial information that reasonable goals for treatment can be set. This is particularly important in chronic illness where, once again, cure is not the outcome, but rather helping the child to fulfill as much of his or her potential as possible. This is most clearly a role that is quintessential to social work: "to enable individuals to develop their capacities fully in the actualization of their social roles in the personal, familial or group con-
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text" (Gershenson, 1977). Perhaps even more significant is working with the family and the child to help them accept reasonable measures of progress for a child and to rejoice in those, rather than to mourn continuously what can never be achieved.
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COMPLIANCE In chronic illness, the search for a proper diagnosis may take a family to several primary physicians and then to a tertiary care setting. Doctor shopping, after a proper but hard-to-accept diagnosis, adds even more physicians to the picture. The result is that a patient with chronic illness will be seen by several physicians, many of whom give contradictory advice and from whom a family must choose one who will eventually manage the patient's care. The development of trust and rapport between the physician and the patient is of primary importance. Korsch, G o d , and Francis (1968) and others have noted that a positive relationship between physician, patient, and family is a key to successful treatment. Compliance with the medical regimen is a major issue of chronic illness. Komaroff (1976) reviews factors affecting compliance. He reiterates that the patientpractitioner relationship influences compliance: "Patients are more likely to be noncompliant if their expectations in seeking care are not met, if they perceive lack of warmth in their practitioner, or if they fail to receive an explanation of their illness." In noting what practitioners can do to encourage compliance, a knowledge of the patient's social and personality risk factors is important. "The therapeutic regimen should be prescribed with an appreciation of a patient's life style in mind" (Komaroff, 1976).That is, the hospital regimen of giving medicine every 6 hours throughout the day and night is not likely to be followed a t home. The social worker's knowledge of the family may be helpful to the pediatrician in determining a treatment regimen. Frequently, the social worker can be a reinforcing person, to allow a family to ventilate fears that are difficult to express to a physician, and to support good compliance and coping. A social worker may also be an intermediary between family and physician, when the family members just need to talk. TEACHING At Children's Hospital a t Stanford, the social worker participates with physicians and other staff in exploring other effects of working with children with chronic illness on staff. House staff and other physicians in training just beginning to experience a sense of competency may be threatened by a family's depth of knowledge and
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understanding of a chronic disease. I t may be difficult to accept that a 21-year-old with cystic fibrosis may know more about the illness than a new physician rotating through the hospital. In this situation, the social worker may help the patient to teach the physician to accept the patient as an expert on the illness and its effects on the patient's personal life. One particularly articulate and sensitive patient with cystic fibrosis contributed, a t the request of the social worker, to occasional teaching conferences with the house staff, expressing her feeling about the illness and allowing the kind of questions that were perhaps not easily asked by the house staff under other circumstances. Teaching conferences with social workers, house staff, and medical students focus on the epidemiology of chronic illness, the impact of chronic illness on patients and families, and community resources available for pediatricians working with the chronically ill. It has been frequently noted by the house staff that this information had not been part of their preparation in medical school (Holdaway, 1963). STAFF SUPPORT Social workers function in a variety of ways to support other staff. At the Children's Hospital, these range from meeting to discuss the impact of working with chronically ill children, to having regular rounds with nursing staff to acquaint them with psychosccial problems of patients and their families. Of particular importance is helping the staff to understand their own feelings and needs when working with such patients. A typical meeting might focus on issues revolving around "giving and taking" in the context of the patients' and the staff members' needs. Hospital staff may experience certain problems: 1. Their personal life is sacrificed to meeting patients' needs (seeing patients on days off, etc.). 2. Early burnout. 3. At certain times, too close relationships with patients may inhibit staff from performing professional roles (problems with confidentiality or overidentification). 4. Staff have no giving left for deserving family and friends.
These problems seem to be ongoing in a children's hospital which sees ~rimarilvchronicallv ill children. The following rough guidelines were ;eveloped from these meetings to help staff. should:
he^
-Be aware of their feelings and of those of the patient. -Give of themselves: time, caring, attention, listening, support, and professional skills.
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-Be creative with their giving. -Recognize special events. -Provide opportunities for a child to give to the other patients, the family, or the hospital. -Give a s a group (e.g., all nurses, all occupational therapists). -Give things of sentimental, not financial, value.
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THE TEAM As part of the team approach for care of patients a t the Children's Hospital, social workers on each service meet with nurses, occupational and recreational therapists, and others to review progress with patients with whom the staff are familiar. This is helpful both for the social worker, who receives many referrals from knowledgeable and concerned staff, and for staff, who learn about patients who are outpatients or patients previously referred. Good patient care requires effective and open communication between other staff and social workers. PROGRAM The social workers have found it useful to develop a programmatic role with the services to which they are assigned. This may include group work with patients or parents, participation in a summer camp program for certain children, or involvement with local chapters of voluntary agencies (e.g., American Lung Association, Cystic Fibrosis Foundation). Determination of the best approach to meeting the psychosocial needs of the patient will be made by the social worker, with the patient and the family participating. Information may also be obtained from physicians, nurses, and others interested or involved with the patient. For instance, an isolated adolescent with cystic fibrosis who is denying the illness may be referred to the Cystic Fibrosis Young Adult Group run by the social worker, or it may be suggested that an asthmatic child and his or her parents attend their respective portions of "Camp Wheeze." The programmatic role has been especially helpful in encouraging families and patients to get together t o share their experience and expertise in handling chronic illness. This has enabled the social worker to act a s a catalyst to help patients and families help themselves. Thus our work provides a dual role for the social worker: work with individual patients and their families, and preventive, programmatic work. Each year we maintain statistics regarding the nature of our clinical
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contacts with patients and families. During 1977,67.6% of our patient contacts were related to emotional adjustment, 14.8% to socioeconomic problems, 6.6% to explanation of physical illness, and 11% to complexities in the community living plan. Approximately half of our working time is spent in face-to-facecontact with patients; the rest is spent in recording, follow-upwork, conferences, or meetings.
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DISCUSSION Clearly, the role of the social worker in a pediatric chronic illness setting is determined by the needs of the population served. The striking features of chronic illness are the long-term contact with the health care system, the magnitude of the intrustion of the illness on the patient and family's life-style, and the current attempt to treat the patient as much as possible as an outpatient, in the home and as part of a community. All of this has great ramifications for the role of the social worker: a need to provide some of what the health care system apparently cannot-continuity and understanding of the dynamics of a long-term relationship, beginning with a tremendous dependence and ultimately evolving to a partnership between the patient and professional staff; an effort to mobilize the increasingly complex community resources. both financial and concrete; and the need to enable a patient to mobilize internal strengths to cope and grow. All of this implies that a social worker must be acutely aware of the three systems that have an impact on the patient: the health care system; the community in which the patient resides; and the family, the internal and external support system of the patient. Particularly challenging is to allow patients to develop as individuals, even if on a slightly different timetable than their not chronically ill peers, and concomitantly to allow patients to develop in the context of their relationship with the health care system, a parallel of their personal growth. Inherent in all this is an understanding of the unique role of the social worker in a medical setting-being in a host setting that may conceive its goals in a much narrower framework, and being part of an interdisciplinary team with an almost "automatic" entree into the care of the patient-and an understanding of the three "employers" of the social worker-the hospital, the physician, and the patient. I t is to the great credit of social workers that they can maintain sight of their ultimate goal: to work with the health care system to enable the patient to achieve the highest possible level of functioning. As Gershenson (1977) notes: "This may be accomplished through direct services or through a focus on institutional change which significantly alters the ecology."
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I t is the unique knowledge of the social worker of the many forces at work that becomes crucial in the choice of intervention for the treatment and successful adaptation of the patient to chronic pediatric illness.
REFERENCES Gentry et el. American Journal of Public Health Febmary 1973.63. Gershenson. C. P.Child maltreatment, family stress and ecological insult. American Journal ofpublic Health, July 1977.p. 602. Green, M.. & Haggerty. R. J. Ambulatory pediatrics. Philadelphia: W. B. Saunders. 1968.(a) Green. M., & Haggerty, R. J. Edidemiology of chronic disease. Ambulato y pediatrics. Philadelphia: W. B. Saunders, 1968.(bl Holdaway. Educating the handicapped child and his parents. Clinical Pediatrics. 1963.
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11.
Komaroff. A. L. American JournalofPublic Health. September 1976,66.833. Korsch. B.. Gozzi, E.. & Francis, V. Gaps in patient-doctor communication, doctorpatient interaction and patient satisfaction. Pediatrics. 1968.42.855, Pfouts, J . H.. & McDaniel. B. Medical handmaidens or professional colleagues: A survey of social work practice in the pediatrics departments of twenty-eight Leaching hospitals. Social Work in Health Care. Spring 1977.2(3),275-283. Soroker, E. P. Analysis of pediatric outpatient care. Health and Social Work, May 1977,z.101-102. Strauss. A. L.The rotational system: I t s impact upon teaching, learning and the medical service: Professions, work and careers. San Francisco: San Francisco Sociology Press. 1971. Ullmann. A,. Goss, M. M.. Davis. M. S.. & Mushinski, M. Activities, satisfaction and problems of social workers in hospital settings. Social Seruice Review. March 1971. 45. 17-29.
Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20
SOCIAL WORK PRACTICE AND CHRONIC PEDIATRIC ILLNESS a
b
Anne S. Bergman LCSW, MPH , Norman J. Lewiston MD & Aleda M. West MSW
c
a
Director of Social Services, Children's Hospital at Stanford, Palo Alto, CA, 94304 b
Chief, Allergy Pulmonary Disease Service, Children's Hospital at Stanford c
Oncology Social Worker, Children's Hospital at Stanford Published online: 26 Oct 2008.
To cite this article: Anne S. Bergman LCSW, MPH , Norman J. Lewiston MD & Aleda M. West MSW (1979) SOCIAL WORK PRACTICE AND CHRONIC PEDIATRIC ILLNESS, Social Work in Health Care, 4:3, 265-274, DOI: 10.1300/J010v04n03_02 To link to this article: http://dx.doi.org/10.1300/J010v04n03_02
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/ page/terms-and-conditions
SOCIAL WORK PRACTICE AND CHRONIC PEDIATRIC ILLNESS
Downloaded by [University of Glasgow] at 04:53 20 December 2014
Anne S. Bergman, LCSW, MPH Norman J. Lewiston, MD Aleda M. West, MSW
ABSTRACT. The role of social workers in a pediatric chronic illness setting is presented. The difference between acute and chronic illness is explored, with emphasis on the ramifications of these differences for social work pmctice. Early assessment ofpatients and families provides the social worker with a data base from which to select an appropriate intentention with families. Ofprimary importance is the amelioration of feelings of helplessness, dependency, and isolation This may be accomplished by helping families anticipate problems, mobilizing resources to help, and encoumging families to share their experiences with other families. Because the medical system, particularly in a teaching hospital, may not provide continuity of care for patients, the rekitionship of the social worker to patient and family, and resulting knowledge of the family, becomes an important resource in the provision of high-quality care.
Much has been written about the role of social workers in various settings. There has been ongoing discussion about the "mission" of social work. Most recently an entire issue of Social Work (September 1977) was devoted to conceptual frameworks and a discussion of purpose. Scott Briar noted a t the meeting reported on that the "inescapable conclusion a t this time in the history of social work is that there is not a widespread consensus about the profession's mission and purpose." For social workers not in primarily mental health or social welfare settings, this mission appears to be particularly clouded. In the medical setting, starting from Dr. Richard Cabot's introduction of the use of social workers into the Massachusetts General Hospital in 1906 to the present, social workers have found themselves torn between the medical model of care and whatever their own professional objectives might be. I n a study undertaken in 1975 by Pfouts and McDaniel(1977,p. 282) it was clear that the most important social work role in the pediatric department of 28 teaching hospitals was the demonstration through direct service. This study apparently supported the data by Ullmann, Ms. Bergman is Director o f Social Services, Children's Hospital at Stanford. 520 Willow Road. Pa10 Alto, California 94304. Dr. Lewiston is Chief. AUergy Pulmonary Disease Service. Children's Hospital at Stanford. Ms. W e s t is former oncology social worker at Children's Hospital a t Stanford. Swiel Work in Healthcare. Vol. 4131. Spring 1979 0 1 9 7 9 by The Heworth Press.AU rights reserved
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Goss, Davis, and Mushinski (1971) which indicated that there was more emphasis on direct service to clients than on other roles such as consultation, teaching, research, or systems change. Mow successful is the demonstration of direct service provided by social workers to patients in a medical setting? I t has been noted by Eleanor P. Soroker (1977) in her "Analysis of Pediatric Outpatient Care" that "even when referrals to the social senrice department were made, they were nonspecific rather than precisely directed at the particular problem observed" (p. 101).In addition, in Ms. Soroker's study of parents' compliance, the large number of return appointments to medical clinics kept by parents reflected this tendency to stress the physical aspects of illness and not recognize the emotion& components. In those cases that were referred to the social service department, only one half o f the parents kept their appointments. When they were interviewed at the time of follow-up, these parents reported that they had not understood the problem and its treatment and did not recall an explanation of the reason for the referral (p. 102)
These studies plus the study by Gentry et al. (1973)all add weight to the evidence that not only are social workers not clear about their mission in medicine but physicians and families are equally unclear. Because of the continuing discussion of the mission of social work, and the fact that social work practice varies from setting to setting, this paper explores some of the characteristics of social work practice in a pediatric setting with chronic disease. This type of practice will then be discussed in the context of the current debate over the mission of social work. CHRONIC ILLNESS IN CHILDREN Chronic illness is defined as a condition persisting for more than 3 months (Green& Haggerty, 1968a).The total cumulative prevalence in children under 18is between 10% and 20% (Green& Haggerty, 1968bk. In spite of the relatively large number of children affected by chronic illnesses, our health care system is primarily oriented toward the care of acute illness. Because of this, children with long-term disease and their parents face certain obstacles in their attempt to receive adequate health care. In recent years, there have been significant changes in the manage ment of children with chronic illnesses. Poliomyelitis and rheumatic fever have virtually disappeared. Many other chronic disorders such as bronchial asthma, rheumatoid arthritis, and cerebral palsy are now treated intensively as outpatient diseases. The children now spend most of their time a t home and in the community-not in the hospital.
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267
Long-term convalescent hospitals for children are almost extinct. In 1971, the average length of stay a t the Children's Hospital a t Stanford (formerly Convalescent Hospital), a hospital for chronic and catastrophic illness, was 24 days. In 1975, the average length of stay was 9.6 days, and in 1976, 8.21 days, clearly a trend toward shorter inpatient stays. Chronic illnesses are of long duration. Months and years of interactions between a patient, the family, and the health care system may encompass a patient's childhood, adolescence, and adulthood. For the health care system to be responsive to the needs of families over a long period of time is extremely difficult. Most hospitals are oriented exclusively to the care of short-term illness, and outpatient clinics follow patients in an episodic, crisis oriented fashion. In addition, continuity of care is lost because of high turnover of health professionals. Particularly in teaching institutions, the system of rotation from service to service guarantees that a family will have little opportunity to establish a long-term relationship with a physician (Strauss, 1971). The problem in acute illness is proper diagnosis and the delivery of treatment. I t is assumed that the patient will be relatively well within a few days or weeks and will be able to return home and parti$pate in normal activities. Insurance companies are more generous in their coverage of acute illness, and there is little involvement with ancillary medical services. In contrast, chronic illnesses are not cured; they are managed. This creates a special set of circumstances for the patient and the physician which lead to behaviors on the part of both groups that are different from behaviors when a child is acutely ill. Some of the differences between chronic illness and acute illness will be discussed in this paper, with a particular emphasis on the ramifications of these differences for the role of the social worker. SOCIAL WORK SERVICES At the Children's Hospital a t Stanford, social workers are assigned to cover one or more services. Each social worker, in essence, becomes an expert on the impact of a given illness on both families and staff working with it. In an academic system where rotation of medical staff is the rule, frequently the only two persons on a service who are able to provide continuity of care to patients are the medical service chief and the social worker. One of the major functions of the social worker is the psychosocial assessment of the patient and his or her family. The social worker routinely explores with each new family a t an appropriate time after the diagnosis:
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1. Family structure and relationships: (a)stability of family relationships; (b) relationship between parents; (c) relationship between siblings; (d)availability of extended family and other supportive persons; (e) family attitude toward illness; (f) understanding of illness; and ( g ) past experience with illness. 2. For the patient: (a)prognosis; (b)age at diagnosis; (c)restrictions in activities; (d) impact on school experiences; (e) degree of pain; (f) spent in the hospital; and (g)premorbid personality of the child.
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A noteis placedin thechart for twopurposes: 1.To help the physician understand the patient better and to tailor a treatment plan that will be most acceptable. 2. To help the social worker determine how well the family members may cope with the diagnosis and to determine what would be most helpful to them throughout the course of the illness. Indications for further involvement with the family might be: (a)families expressing a need to be seen; (b) families with few supportive persons available to them (a recent study of satisfaction with social work services a t the hospital revealed that those most satisfied with social work services were those with the fewest community and family supports); (c)farnilies in transition (parents separating, new babies, etc.); (d)families who demonstrate an inability to comply with the medical regimen; (e)families who have previously had bad experiences with a physician; (f) school problems in the child; (g)parents who perceive problems with siblings; and (h)cultural or ethnic barriers to benefiting from medical care.
Typically, spontaneous interviews with parents will be brief and evaluative, allowing patients or parents to ventilate their concerns and helping them anticipate future events. Much anxiety is expressed, particularly around issues of uncertainty about the future, loss of control, and isolation. Support is given to reassure families that their feelings are normal and to be expected. Other issues that are commonly raised by parents are: -How -How -How -How -Mow -How -How
to discipline a sick child. not to spoil the patient. to alleviate the parents' guilt. to handle restrictions in activity of both patient and family. to work with the school system. to handle conflicts between physicians. to find baby-sitters for an ill child.
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-How to tell family and friends about the illness. -How to pay for medical bills. -How to handle siblings' feelings about the patient's illness. All of the above are considered reasonable and expected issues for parents to raise. Of critical importance is understanding the spectrum of normal responses to the stress of coping with chronic illness, and allowing the family to return to an equilibrium. I t is helpful to view these families as normal families in a process of adjustment to a longterm and frequently unpredictable illness that will have an impact on every aspect of their life. Thus, the social worker is there to help the family members maintain their equilibrium. Feelings of independence and helplessness can be alleviated by helping them anticipate problems and plan for their resolution. Practical factors affecting a social worker's intervention with patients and their families are: (a) where the family resides (many of our patients come from distant counties in California); (b) local alternatives for care; (c)the family's preference regarding the nature and location of intervention; (d) the frequency of the patient's return to Children's Hospital a t Stanford; and (e)physician support of social service intervention. The social worker will either make a scheduled appointment with the patient or, ore frequently, will "drop in" to see the family in the clinic or hospital. This may happen a t the request of a physician, nurse, or other staff member, of may happen because the social worker has reason to believe that the family may be in need of help.
Because of the large number of ancillary services involved in the care of a chronically ill child-from special school settings to vocational rehabilitation counselors-there is a significant coordinating function needed to assure communication and agreement on goals of treatment. Although it is in fact the physician who determines the medical goals, the social worker is the staff member whose responsibility it is to monitor the progress of a patient in areas other than the medical. It is only with both medical and psychosocial information that reasonable goals for treatment can be set. This is particularly important in chronic illness where, once again, cure is not the outcome, but rather helping the child to fulfill as much of his or her potential as possible. This is most clearly a role that is quintessential to social work: "to enable individuals to develop their capacities fully in the actualization of their social roles in the personal, familial or group con-
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text" (Gershenson, 1977). Perhaps even more significant is working with the family and the child to help them accept reasonable measures of progress for a child and to rejoice in those, rather than to mourn continuously what can never be achieved.
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COMPLIANCE In chronic illness, the search for a proper diagnosis may take a family to several primary physicians and then to a tertiary care setting. Doctor shopping, after a proper but hard-to-accept diagnosis, adds even more physicians to the picture. The result is that a patient with chronic illness will be seen by several physicians, many of whom give contradictory advice and from whom a family must choose one who will eventually manage the patient's care. The development of trust and rapport between the physician and the patient is of primary importance. Korsch, G o d , and Francis (1968) and others have noted that a positive relationship between physician, patient, and family is a key to successful treatment. Compliance with the medical regimen is a major issue of chronic illness. Komaroff (1976) reviews factors affecting compliance. He reiterates that the patientpractitioner relationship influences compliance: "Patients are more likely to be noncompliant if their expectations in seeking care are not met, if they perceive lack of warmth in their practitioner, or if they fail to receive an explanation of their illness." In noting what practitioners can do to encourage compliance, a knowledge of the patient's social and personality risk factors is important. "The therapeutic regimen should be prescribed with an appreciation of a patient's life style in mind" (Komaroff, 1976).That is, the hospital regimen of giving medicine every 6 hours throughout the day and night is not likely to be followed a t home. The social worker's knowledge of the family may be helpful to the pediatrician in determining a treatment regimen. Frequently, the social worker can be a reinforcing person, to allow a family to ventilate fears that are difficult to express to a physician, and to support good compliance and coping. A social worker may also be an intermediary between family and physician, when the family members just need to talk. TEACHING At Children's Hospital a t Stanford, the social worker participates with physicians and other staff in exploring other effects of working with children with chronic illness on staff. House staff and other physicians in training just beginning to experience a sense of competency may be threatened by a family's depth of knowledge and
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understanding of a chronic disease. I t may be difficult to accept that a 21-year-old with cystic fibrosis may know more about the illness than a new physician rotating through the hospital. In this situation, the social worker may help the patient to teach the physician to accept the patient as an expert on the illness and its effects on the patient's personal life. One particularly articulate and sensitive patient with cystic fibrosis contributed, a t the request of the social worker, to occasional teaching conferences with the house staff, expressing her feeling about the illness and allowing the kind of questions that were perhaps not easily asked by the house staff under other circumstances. Teaching conferences with social workers, house staff, and medical students focus on the epidemiology of chronic illness, the impact of chronic illness on patients and families, and community resources available for pediatricians working with the chronically ill. It has been frequently noted by the house staff that this information had not been part of their preparation in medical school (Holdaway, 1963). STAFF SUPPORT Social workers function in a variety of ways to support other staff. At the Children's Hospital, these range from meeting to discuss the impact of working with chronically ill children, to having regular rounds with nursing staff to acquaint them with psychosccial problems of patients and their families. Of particular importance is helping the staff to understand their own feelings and needs when working with such patients. A typical meeting might focus on issues revolving around "giving and taking" in the context of the patients' and the staff members' needs. Hospital staff may experience certain problems: 1. Their personal life is sacrificed to meeting patients' needs (seeing patients on days off, etc.). 2. Early burnout. 3. At certain times, too close relationships with patients may inhibit staff from performing professional roles (problems with confidentiality or overidentification). 4. Staff have no giving left for deserving family and friends.
These problems seem to be ongoing in a children's hospital which sees ~rimarilvchronicallv ill children. The following rough guidelines were ;eveloped from these meetings to help staff. should:
he^
-Be aware of their feelings and of those of the patient. -Give of themselves: time, caring, attention, listening, support, and professional skills.
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-Be creative with their giving. -Recognize special events. -Provide opportunities for a child to give to the other patients, the family, or the hospital. -Give a s a group (e.g., all nurses, all occupational therapists). -Give things of sentimental, not financial, value.
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THE TEAM As part of the team approach for care of patients a t the Children's Hospital, social workers on each service meet with nurses, occupational and recreational therapists, and others to review progress with patients with whom the staff are familiar. This is helpful both for the social worker, who receives many referrals from knowledgeable and concerned staff, and for staff, who learn about patients who are outpatients or patients previously referred. Good patient care requires effective and open communication between other staff and social workers. PROGRAM The social workers have found it useful to develop a programmatic role with the services to which they are assigned. This may include group work with patients or parents, participation in a summer camp program for certain children, or involvement with local chapters of voluntary agencies (e.g., American Lung Association, Cystic Fibrosis Foundation). Determination of the best approach to meeting the psychosocial needs of the patient will be made by the social worker, with the patient and the family participating. Information may also be obtained from physicians, nurses, and others interested or involved with the patient. For instance, an isolated adolescent with cystic fibrosis who is denying the illness may be referred to the Cystic Fibrosis Young Adult Group run by the social worker, or it may be suggested that an asthmatic child and his or her parents attend their respective portions of "Camp Wheeze." The programmatic role has been especially helpful in encouraging families and patients to get together t o share their experience and expertise in handling chronic illness. This has enabled the social worker to act a s a catalyst to help patients and families help themselves. Thus our work provides a dual role for the social worker: work with individual patients and their families, and preventive, programmatic work. Each year we maintain statistics regarding the nature of our clinical
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contacts with patients and families. During 1977,67.6% of our patient contacts were related to emotional adjustment, 14.8% to socioeconomic problems, 6.6% to explanation of physical illness, and 11% to complexities in the community living plan. Approximately half of our working time is spent in face-to-facecontact with patients; the rest is spent in recording, follow-upwork, conferences, or meetings.
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DISCUSSION Clearly, the role of the social worker in a pediatric chronic illness setting is determined by the needs of the population served. The striking features of chronic illness are the long-term contact with the health care system, the magnitude of the intrustion of the illness on the patient and family's life-style, and the current attempt to treat the patient as much as possible as an outpatient, in the home and as part of a community. All of this has great ramifications for the role of the social worker: a need to provide some of what the health care system apparently cannot-continuity and understanding of the dynamics of a long-term relationship, beginning with a tremendous dependence and ultimately evolving to a partnership between the patient and professional staff; an effort to mobilize the increasingly complex community resources. both financial and concrete; and the need to enable a patient to mobilize internal strengths to cope and grow. All of this implies that a social worker must be acutely aware of the three systems that have an impact on the patient: the health care system; the community in which the patient resides; and the family, the internal and external support system of the patient. Particularly challenging is to allow patients to develop as individuals, even if on a slightly different timetable than their not chronically ill peers, and concomitantly to allow patients to develop in the context of their relationship with the health care system, a parallel of their personal growth. Inherent in all this is an understanding of the unique role of the social worker in a medical setting-being in a host setting that may conceive its goals in a much narrower framework, and being part of an interdisciplinary team with an almost "automatic" entree into the care of the patient-and an understanding of the three "employers" of the social worker-the hospital, the physician, and the patient. I t is to the great credit of social workers that they can maintain sight of their ultimate goal: to work with the health care system to enable the patient to achieve the highest possible level of functioning. As Gershenson (1977) notes: "This may be accomplished through direct services or through a focus on institutional change which significantly alters the ecology."
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I t is the unique knowledge of the social worker of the many forces at work that becomes crucial in the choice of intervention for the treatment and successful adaptation of the patient to chronic pediatric illness.
REFERENCES Gentry et el. American Journal of Public Health Febmary 1973.63. Gershenson. C. P.Child maltreatment, family stress and ecological insult. American Journal ofpublic Health, July 1977.p. 602. Green, M.. & Haggerty. R. J. Ambulatory pediatrics. Philadelphia: W. B. Saunders. 1968.(a) Green. M., & Haggerty, R. J. Edidemiology of chronic disease. Ambulato y pediatrics. Philadelphia: W. B. Saunders, 1968.(bl Holdaway. Educating the handicapped child and his parents. Clinical Pediatrics. 1963.
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Komaroff. A. L. American JournalofPublic Health. September 1976,66.833. Korsch. B.. Gozzi, E.. & Francis, V. Gaps in patient-doctor communication, doctorpatient interaction and patient satisfaction. Pediatrics. 1968.42.855, Pfouts, J . H.. & McDaniel. B. Medical handmaidens or professional colleagues: A survey of social work practice in the pediatrics departments of twenty-eight Leaching hospitals. Social Work in Health Care. Spring 1977.2(3),275-283. Soroker, E. P. Analysis of pediatric outpatient care. Health and Social Work, May 1977,z.101-102. Strauss. A. L.The rotational system: I t s impact upon teaching, learning and the medical service: Professions, work and careers. San Francisco: San Francisco Sociology Press. 1971. Ullmann. A,. Goss, M. M.. Davis. M. S.. & Mushinski, M. Activities, satisfaction and problems of social workers in hospital settings. Social Seruice Review. March 1971. 45. 17-29.
