Working Collaboratively with Families

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This article was downloaded by: [University of Wisconsin-Milwaukee]On: 07 October 2014, At: 18:32Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number:1072954 Registered office: Mortimer House, 37-41 Mortimer Street,London W1T 3JH, UKSocial Work in Health CarePublication details, including instructionsfor authors and subscription information: Collaborativelywith FamiliesAgnes B. Hatfield PhD aa University of Maryland , USAPublished online: 12 Oct 2008.To cite this article: Agnes B. Hatfield PhD (1997) Working Collaborativelywith Families, Social Work in Health Care, 25:3, 77-85, DOI: 10.1300/J010v25n03_07To link to this article: SCROLL DOWN FOR ARTICLETaylor & Francis makes every effort to ensure the accuracy ofall the information (the Content) contained in the publicationson our platform. 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Terms & Conditions of accessand use can be found at by [University of Wisconsin-Milwaukee] at 18:32 07 October 2014 Collaboratively with Families Agnes B. Hatfield, PhD SUMMARY. Research studies indicate that significant tension char- acterizes the relationships between providers and families whose relative is being treated in the mental health system. The author recommends that genuinely collaborative relationships be developed in order that people receiving treatment receive optimal care. Collab- oration is defined, barriers identified, and ways to overcome these barriers suggested. [Arlicle copies available for afee fmm The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinjb@] The role that families play in the support and care of their relative with mental illness has gained increased attention in the past two decades. It is now generally recognized that people with mental illnesses do substantial- ly better in life if they have the interest and concern of their families. It is also recognized that the personal cost to the family in providing support and care can be high and burnout is likely if providers do not provide appropriate support and information. The way families of mentally ill relatives are viewed has shifted so markedly in the past few years that it has often been called a paradigm shift. Providers have shifted from seeing families as causing mental illness to viewing them as victims of it with their suffering being almost as great Agnes 8. Hatfield is Professor Emeritus, University of Maryland. This paper was presented at the First International Conference on Social Work in Health and Mental Health Care, The Hebrew University of Jerusalem, Jerusa- lem. January, 1995. [Hawonh co-indexing entry note]: "Working Collaboratively with Families." Hatlield. Agnes B. Co-published simultaneously in Social Work in Health Cam (The Hawonh Press, Inc.) Vol. 25. No. 3, 1997, pp. 77-85; and: Social Work in Menlal Health: Tiends and Issues (ed: Uri Aviram) The Haworih Press, lnc.. 1997, pp. 77-85. Single or multiple copies of this article are available for a fee from The Hawonh Document Delivery Service [I-800-342-9678. 9:00 a.m. - 500 p.m. (EST). E-mail address:]. O 1997 by The Haworth Press, Inc. All rights reserved. 77 Downloaded by [University of Wisconsin-Milwaukee] at 18:32 07 October 2014 78 SOCIAL WORK IN MENTAL HEALTH: TRENDS AND ISSUES as that of their disabled relatives. Instead of seeing families as a part of the problem, they are now seen as part of the solution. No longer do profes- sionals focus on the pathology of families, but rather on their strengths. The view that families need treatment has given way to the view they need support, information, and practical assistance. The goal is to empower families, not diagnose and label them as clients or patients. SOCIAL CHANGES LEADING TO ATTITUDINAL CHANGES The recent profound attitudinal changes toward families were a result of a number of interrelated social changes. Of special importance were: (1) A shift from psychological to biological explanations of mental illness. Through modem technology much progress has been made in understanding the nature of the brain and the way that certain brain anom- alies explain the symptoms of mental illnesses (Andreason, 1984). Well designed psychosocial research has not supported earlier notions of family causation of mental illness (Howells & Guirguis, 1985; Hirsch & Leff, 1975). (2) A shift in the locus of care of mentally ill individuals from institu- tions to communities. During the period of the asylum, it was possible to keep families at arms length, but once people were returned to the comrnu- nity, professionals began relying on families for much of the necessary caregiving. It was no long tenable to view families as competent in care- giving and at the same time consider them pathological and noxious to their relative. (3) The growth of the family consumer movement. The National Al- liance for the Mentally Ill (NAMI) in the United States has grown rapidly in sophistication and influence since its beginnings in 1979. For the first time in history, there was a vocal group of families insisting that their voices be heard. For the first time providers came to understand the tre- mendous burden of mental illness to the family and how families defined their problems and needs. They made clear that they wanted: (1) empath- ic understanding; (2) information and education rather than treatment; (3) partnership with professions in the treatment of their ill relatives (Hat- field & Lefley, 1987; Hatfield, 1990; Lefley & Johnson, 1990; Marsh, 1992). PROFESSIONAL RESPONSES TO FAMILY NEED Of the three family demands noted above, probably most progress has been made on the first two. Understanding of the family dilemma has been Downloaded by [University of Wisconsin-Milwaukee] at 18:32 07 October 2014 Agnes 6. HaiJield 79 significantly enhanced by a plethora of studies about the way that mental illness affects the whole family (Cooke, Lefley, Pickett, & Cohler, 1994; Hatfield, 1978, 1979; Hoenig & Hamilton, 1955; Lefley, 1987; Tessler, Killian, & Gubman, 1987). Numerous educational programs and a variety of support groups have been created in all parts of the country as a response to the problems and needs identified by families (Hatfield, 1990, 1994; Marsh, 1992). While not yet available everywhere, there is growing evidence that families value these programs a great deal (Hatfield, Coursey, & Slaughter, 1994). The third concern of families for genuine partnerships with providers in the treatment of their relatives, however, has not been fully realized. In fact, several studies have reported consistently negative feelings about fami- ly relationships with providers (Hatfield, 1978, 1979; Holden & Lewine, 1982; Johnson, 1984; Terkelsen, 1990). Johnson found that families were not satisfied with either the information that professionals provided them or with the services received. Holden and Lewine (1982) reported that a majority (74%) of families were dissatisfied with mental health services and Lefley (1985) noted that mental health professionals who had mentally ill relatives were as dissatisfied as other families. Additional studies have suggested that professionals were unaware of the degree of dissatisfaction of families. These studies demonstrated wide ' discrepancies between the way that families evaluated services and the way professionals viewed them. Families surveyed by Hatfield (1983) reported that there was essentially no relationship between their needs and what professionals chose to address in sessions with them. McElroy (1987) found significant differences between families' and nurses' perceptions of the degree to which families were stressed by vari- ous aspects of their relative's illness. Other researchers (Spaniol, Jung, Zipple, & Fitzgerald, 1987) reported that 82 percent of professionals in their study felt that families were satisfied with services whereas 45 per- cent of families reported being dissatisfied. Discrepancies in perception were found in many areas: medication, family therapy, crisis intervention, social and vocational rehabilitation, hospitalization, day treatment, and educational services. More recent studies suggest that some of the dissatisfaction with ser- vice providers may be beginning to diminish. Bernheim and Switalski (1988b) surveyed 350 inpatient and outpatient staff and 250 families about ' their attitudes toward each other. Generally, staff were disposed to value families and felt that they should be involved in their relative's treatment, but the majority reported spending less than an hour a week in contact with Downloaded by [University of Wisconsin-Milwaukee] at 18:32 07 October 2014 80 SOCIAL WORK IN MENTAL HEALTH: TRENDS AND ISSUES families. Staff said that conflict among themselves as to the proper role of families and lack of time were impediments to working with families. Solomon and Marcenko (1992) interviewed families one month after the patient was released from the hospital and a year later to determine family satisfaction with services. Families were more satisfied with outpa- tient than inpatient services and more satisfied with services to their rela- tive than to themselves. Greenburg, Greenley, and Brown (in press) re- ported that psychological stress decreased as the provision of mental health services to clients increased and as families experienced an in- creased sense of being collaborators in the treatment process. The authors felt that through collaboration, providers foster feelings of competence and predictability and they validate the family's experiences and its role as primary support to the client. They said that when families are excluded from the process, their distress is intensified, they feel less confident and more helpless. These findings suggest that the desire for collaboration may be grow- ing, but there are still many barriers to overcome. THE MEANING OF COLLABORATION Although the word "collaboration" is frequently used to characterize desirable relationships between families and providers, the word is not always used with uniform meaning. We use the word "collaboration" here to mean working together in such a way that the needs of each individual in a situation are given due consideration. Everyone affected by a decision participates in making it. It assumes that people are more likely to cooper- ate and carry out a decision when they have participated in making it (Hatfield, 1994). Collaboration involves shared problem definition, shared decision mak- ing, and shared responsibility by all participants. In this process, the pro- vider, family, and consumer relate as equals. Final decisions must reflect a balance of the needs of all. OVERCOMING BARRIERS TO COLLABORATION It takes more than positive attitudes and determination to develop col- laborative relationships. It takes understanding of the barriers that hamper the process and the development of effective interpersonal skills. It takes: (1) Respect for the unique perceptions of each individual. Each person Downloaded by [University of Wisconsin-Milwaukee] at 18:32 07 October 2014 Agnes B. Ha field 81 brings a unique perception to an issue under consideration. Successful collaboration involves understanding the perspective of others and re- specting it as valid for these persons at this particular time. Often profes- sionals come to the situation with many preconceived notions about fami- lies. Some of them originate in professional training and current theories about families. Such labels as "dysfunctional," "codependent," "noxious," and "high expressed emotion" tend to stereotype families and preclude empathic understanding. Although there is a large volume of studies on family perception of burden now available, there are still many gaps in our knowledge. We need studies to show how burden differs depending upon the relationship of the caregiver (parent, spouse, adult child, sibling, etc.) to the ill mem- ber. We need to know to what extent the age, length of illness, gender, and diagnosis of the mentally ill member as well as the age and gender of the caregiver make a difference. A recent study of over three thousand mem- bers of the National Alliance for the Mentally I11 suggests that such factors do influence caregiver burden (Hatfield, Coursey, & Slaughter, 1994). Professionals need considerable cross-cultural training related to men- tal illness and the family. Ours is a rapidly evolving society made up of an increasing variety of ethnic groups with differing views about mental illness and the appropriate roles for families. Lefley's extensive work in this area are an excellent resource (Lefley, 1984, 1985, 1986, 1987). (2) Equality of relationships. The idea of collaboration calls for a depar- ture from traditional hierarchical relationship in which families play a passive role. The new direction calls for empowering families and work- ing with them in cooperative alliances. The power of professionals in the past lays in the fact that they defined the problem, determined the solu- tions, and evaluated safety and efficacy. In a collaborative approach, the family, consumer, and provider would be equal partners in this process. Therapeutic relationships for which most professionals have been trained are inherently unequal. Traditionally it has been a doctor-patient relationship in which the expert knows best. Professionals have been trained in a mental health ideology which stresses that problems lie in people; people who cannot cope with their environment are by definition the problem. They have personal deficits, sickness, or pathology for which treatment is needed. Some professionals find it difficult to understand how the demands of mental illness can overwhelm the resources of the most competent of persons. (3) New interpersonal skills. Whereas therapy was once considered the major skill needed to deal with all personal problems, a collaborative model requires skill in communication, problem solving, negotiation, and Downloaded by [University of Wisconsin-Milwaukee] at 18:32 07 October 2014 82 SOCIAL WORK IN MENTAL HEALTH: TRENDS AND ISSUES consensus building. Certain beliefs must guide this process: Everyone affected by the decision must be involved in making it. There is no one right answer; the goal is to find a solution that all can agree to. The process may be slow but it is more likely to result in a stable solution than one which is arbitrarily imposed. Professionals will need skill in dealing with conflict and developing consensus (Hatfield, 1994). Bernheim and Switalski (1988b) reported professional difficulty in agreeing on appropriate roles for families. Just as providers and consumers each have roles specific to them, families have roles that they can best play: Providing support. The family is the most basic sociological unit in our culture. People with mental illnesses have their earliest and most continu- ous associations with their families. They are particularly dependent on - their families because they have dificultydeveloping support networks on their own. However committed thev mav be. staff members cannot substi- . , tute for the family. Every effort must bc made to support families in this role for there is no adequate substitute. Providing information. Families have a uniquely important role in pro- viding information about their relative with mental illness. They knew the person before the illness and they know the chronology of the illness over time. They are often in a position to observe day to day changes in behav- ior that can be invaluable to providers. Monitoring services. Even though providers have mechanisms for qual- ity control in their agencies, families have the right and responsibility to observe the progress of their particular relative and to report these ob- servations to those in charge. Although some providers feel defensive about this kind of oversight, it is not that different from the role that families play when their elderly relative is in a nursing home. Advocating for services. One of the most powerful voices for the sup- port of new programs and resources comes from members of the family movement. The role of professionals, while important, is limited because of their perceived self-interest. Providers play a special role in providing expert knowledge generated from years of study and experience in dealing with mental illness. It is important that families respect thc value of this kind of knowledge as well as their professional experience in treating thesc disorders. Professionals have an obligation to stay on the cutting edge of new knowledge in their fields and be able to translate academic expertise into terms that families can use in decision making. Downloaded by [University of Wisconsin-Milwaukee] at 18:32 07 October 2014 Agnes B. Harjield FAMILY INVOLVEMENT AS AN INTEGRAL PART OF THE SYSTEM As we have noted the verbal commitment to work with families is growing, but actual policies and programs for canying out this commit- ment are spotty at best. We are unaware of any state in which there is a comprehensive plan for involving families. Rather there are isolated ef- forts by well-meaning professionals in generating occasional activity in work with families in selected agencies. While these sporadic efforts are to be commended, they do not translate into a concrete plan upon which families can depend nor do they insure predictable relationships with providers. There are probably duplication of effort in some places and huge gaps in others resulting in poor use of resources. CONCLUSIONS Institutional change is an evolutionary process, Bernheim and Switalski (1988a) noted after being involved in a process of change in a psychiahic hospital in Buffalo, New York. Institutional change involves a set of shared values, assumptions, and goals. Families and professionals must participate equally in this process. Attention must be given to staff needs, as well as to family needs, so that professionals do not see working with families as an additional burden. Considerable system change will be necessary before families are ap- propriately involved in the various agencies and institutions which serve their relatives with psychiatric disabilities. REFERENCES Andreason. N. 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