Counseling Caregivers of Relatives with Schizophrenia: Themes, Interventions, and Caveats

Counseling Caregivers of Relatives with Schizophrenia: Themes, Interventions, and Caveats
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   Fam Proc 34:413-425, 1995 Counseling Caregivers of Relatives with Schizophrenia: Themes,Interventions, and Caveats SIDNEY BLOCH, MBCHB, PhD, FRCPsych, FRANZCP a GEORGE I. SZMUKLER, MD, DPM, FRCPsych, FRANZCP  b HELEN HERRMAN, BMEDSc, MD, FRANZCP, FFPHM, FAFPHM c ANN BENSON, MA, RMN d SILVANA COLUSSA, BSc d a Associate Professor and Reader, Department of Psychiatry, University of Melbourne, St. Vincent's Hospital, Fitzroy Victoria 3065,Australia.  b Consultant Psychiatrist, Bethlem Royal and Maudsley Hospitals, Denmark Hill, London, England. c Professor/Director, Department of Psychiatry, University of Melbourne, St. Vincent's Hospital, Fitzroy Victoria, Australia. d Ann Benson, Acting Director, and Silvana Colussa, Research Assistant, are affiliated with the Institute for Cultural Studies inPsychiatric Nursing Care, Australia.  As part of a controlled study of the effectiveness of a counseling program for family caregivers of patients with schizophrenia, we conducted a comprehensive examination of the process. The particular foci were on themes that aroseduring sessions, principal therapeutic interventions offered, and caveats for counselors working in the field. The most  striking finding was the diverse range of themes, covering personal, coping, family, and social aspects of the caregiving experience. This required a correspondingly broad array of interventions. The implications are clear: confining counseling for caregivers to such traditional dimensions as education or attempts to reduce emotional expressivenessdenies them the opportunity to deal with other equally relevant concerns.  Since the 1950s, the number of hospital beds for psychiatric patients has diminished greatly, but community serviceshave not developed commensurately. All too often patient care has fallen on the shoulders of family members. Thedifficulties they have encountered have been vividly described by Creer and Wing (1974), Hatfield (1978, Hatfield 1990),and Carey and Leggatt (1987). The burden is substantial, as is the impact on physical and mental health (Creer, Sturt,& Wykes, 1982; Fadden, Bebbington, & Kuipers, 1987; Gibbons, Horn, Powell, & Gibbons, 1984). For example, a survey by the Schizophrenia Fellowship in Victoria, Australia, found that 44% of families surveyed experienced "quite serious physical and emotional health problems" (Carey & Leggatt, 1987). Although the link between family and serious mentalillness has been thoroughly researched over recent years, the emphasis has been on the effect of relatives' attitudes onoutcome and course (for example, Falloon and colleagues, 1982; Vaughn & Leff, 1981). The actual experience of caregiving has been understudied, with sparse attention paid to how the caregiver may be helped to cope with an oneroustask.Given this relative lack of knowledge, we sought to evaluate a controlled intervention designed to reduce burden and toincrease physical and emotional well-being in caregivers of patients with schizophrenia. In this report, a companion to oneon outcome (Szmukler, Herrman, Colussa, et al  ., in press), we describe the counseling provided; how we chose the model;an account of the model itself and its application; themes that arose during the sessions; therapeutic interventions; andcaveats for counselors embarking on a similar pursuit. Finally, we discuss lessons learned and suggest recommendations for future work. THE PROGRAM Model Selection Our aim was to reduce the burden experienced by caregivers of schizophrenic patients. We felt it necessary to identifyrelevant features of caregiving, especially problematic and taxing ones, and then to develop an individually tailored program that enhanced coping skills. Although increased patient well-being was obviously desirable, we regarded this assecondary to meeting needs of the caregivers themselves.We considered a range of models (Bloch, Hafner, Harari, & Szmukler, 1994, pp. 109-131; Grunebaum & Friedman,  _____________________________________________________________________________________________________________ 1  1988; Wynne, 1994). Many concentrate on education on the premise that knowledge about the illness, its features, and possible causes, helps caregivers to deal more satisfactorily with their ill relative (Anderson, Reiss, & Hogarty, 1986;Birchwood, Smith, & Cochrane, 1992; Cozolino, Goldstein, Nuechterlein, et al  ., 1988; Tarrier, Barraclough, Vaughn, et al  ., 1988). Other interventions seek to modify social factors thought to influence the course of illness by focusing on The patient's clinical status; a notable example is the attempt to reduce high emotional expressiveness (EE) in family members,with the goal of forestalling relapse (see Hatfield, 1990; Hogarty, Anderson, Reiss, et al  ., 1986; Leff, 1994; MacCarthy,Kuipers, Hurry, et al  ., 1989; Vaughan, Doyle, McConaghy, et al  ., 1992). Yet other interventions have a broader approach,using a range of methods to achieve multiple purposes (Falloon, Boyd, & McGill, 1984; Goldstein, 1981; Smith& Birch-wood, 1990).Ultimately, we selected the approach of Robert Bland (1988), University of Queensland, who had devised a model for families of schizophrenic patients. After scrutinizing his work, we invited him to collaborate with us in order to adapt hisfamily intervention model for our work with an individual caregiver (see below). Although many workers have adoptedmultiple family counseling by composing family groups, we were persuaded that an individual approach might have theinherent advantages of facilitating tailor-made interventions to meet specific needs. Moreover, knowledge gained in earlier research, in which we noted that particular concerns were identifiable, paved the way for this individual orientation(Szmukler, Burgess, Herrman, et al  ., in press).A further decision was taken to counsel the caregiver personally. Advice from several support groups indicated thatmany caregivers felt they had been offered inadequate personal support by professionals; the latter were valued only as asource of information about the illness and treatment. Family members also highlighted a difficulty in speaking candidlyduring a professional consultation when the patient was present. Thus, we decided to make it clear to the caregivers that thecounseling was designed especially for them and not for their ill relative. The plan to see caregivers in their homes was based on our wish to demonstrate that we took their problems sufficiently seriously to "go out of our way."Although the counseling was individually oriented, our overall conceptual framework was decidedly systemic. Thus, weoperated on the premises that systemic issues would be major foci of attention (as they turned out to be), that any benefitswould percolate through the family, and that the schizophrenic relative would be a beneficiary indirectly by dint of a better coping caregiver as well as a more cohesive and understanding family atmosphere. Sessions The program comprised six, one-hour weekly sessions. The first of its two components was educational: the focus on thenature of the relative's illness and treatment (for example, the role of medication and its side-effects). This aspect alsoincluded information about health services and voluntary agencies. The second component was designed to delineatecoping strategies that might help the caregiver to deal more effectively with difficulties identified through a questionnaireand brief interview. An important facet was the enhancement of skills to access services and deal with professional staff.Allowing for some flexibility because of the needs of diverse caregivers, sessions were planned as follows: Session 1:  Establish rapport, explain the program's purpose and features, and discuss major problems in thecaregiver's experience. Session 2:  Focus on education, with an account of the illness, its treatment, and available services (an audiotapedescribing these was prepared and handed out). Sessions 3-5:  Scrutinize coping patterns for problems identified in the first two sessions (for example, negativesymptoms, aggression, suicidal behavior, illicit drug usage, difficulty in accessing services and/or relating to professionals) in order to evaluate their effectiveness and to consider alternative strategies if appropriate. Session 6:  Review and anticipate what more can be done to help the caregiver, including the role of self-helpgroups.The process of each session was recorded by the counselor who also noted the proportion of time allocated to suchaspects as "socializing," active listening, providing information, and examining coping. Implementation Sixty caregivers were recruited. Designation of caregivers was made by the patient after he or she had given informedconsent to their participation. Caregivers were then approached, and their informed consent sought. They were thenrandomly allocated to the intervention or to a control treatment comprised of the administration of questionnaires anddistribution of the educational audiotape. Details of design and results can be found in a companion paper (Szmukler Herrman, et al  ., in press). In brief, relatives in the intervention group were better able to understand the patient and had amore positive relationship with him. All would recommend the program to others caregivers. The groups did not differ   _____________________________________________________________________________________________________________ 2  however in terms of coping style and negative aspects of caregiving.The caregivers were living with a person diagnosed with schizophrenia who had been admitted to Royal Park PsychiatricHospital in Melbourne or was under the care of its community team. They were mothers (50%), fathers (12%), daughters(10%), sisters (12%), and spouses (14%). The proportion of prolonged treatment to first-episode psychosis was 1:3.During the course of the intervention, the two counselors (a psychiatric nurse (AB) and a psychologist (SC), who sharedthe task between them, met regularly with the researchers. Supervision was held weekly with SB. Rather than attempt todirect the counselors, he assisted them to appraise their therapeutic judgments, motivations, and "blind spots." Themes These are divided along four dimensions: personal, coping, family, and social (see Table 1).  Personal   aspects coveredneeds and emotional states related to caregiving. The most frequent (in virtually all cases) was a need to "relate her or hisstory," to describe the saga of caring for the ill relative. This need was reflected in the caregiver typically providing a rich,elaborate picture. Table 1 Themes Arising in Counseling Sessions and Their Frequency Cases ( N = 3O ) ThemesN% A. Personal1.Has intense need to share experience28932. Sense of loss and grief10333. Guilt over supposed transmission of illness8274. Sense of helplessness4135. Concern about not doing enough1137B. Coping1. Concern that coping style harms patient5172. Difficulty dealing with patient's dependency8273. Confused whether patient's behavior is due to illness or to personality1137C. Family1. Involved in multiple demanding, caring roles11372. Conflict in family about how to care for patient10333. Feels criticized by family, or that caring role unappreciated930D. Social1. Dissatisfied with mental health services18602. Troubled by social attitudes toward mental illness1137 The next two most common themes (each in about a third of the cases) concerned grief and inadequacy. In the former,the caregiver was preoccupied with a sense of loss over the changed relative who would never become the person srcinallyhoped for.This grief was a prominent feature in a 21-year-old patient who had returned home after his first admission. His parentshad difficulty in accepting his illness and referred constantly to the "old Tom," a gregarious and pleasant-naturedadolescent. The "new Tom," by contrast, was withdrawn, argumentative, and squandered money. The parents felt saddened by Tom's missed opportunities at work and school, and by his bleak future.A sense of inadequacy might manifest itself as a concern that a caregiver was not doing enough. For example, a mother worried about how to manage in the wake of her son's discharge from hospital. Having made every effort to learn aboutschizophrenia and its treatment, she was still concerned to do everything "by the book" in order to prevent relapse. Despitethese assiduous efforts, she felt she could do more, and arranged to meet with her son's doctor to insure that she had not"missed anything."  _____________________________________________________________________________________________________________ 3  In a quarter of caregivers, invariably a parent, guilt was experienced about the putative transmission of schizophrenia tothe offspring    whether through faulty genes, inadequate parenting, or both. In the case of Mrs. A, she felt that her turbulentfirst marriage had contributed to the onset of her son James's illness. Her husband had abused alcohol and maltreated theentire family. Mrs. A had decided to leave him when James was 16 and to move to another town. She later remarried andworked abroad for several years. It was during this period that James was first hospitalized. Mrs. A felt guilt about not being in the country at the time; she was convinced that had she been more available to care for James, he might haveenjoyed a better prognosis.A final category was a feeling of overwhelming helplessness and hopelessness. Vera and Bob had had consistent troublewith the aggressive behavior of their 24-year-old schizophrenic son. He would frequently threaten them if they failed togive him what he wanted. Attempts by professional staff to arrange independent accommodations had failed becauseMatthew spent his money on illicit drugs. He repeatedly sought his parents' assistance to buy food and pay the rent.Community workers were frustrated with what they saw as the couple's unconditional aid, especially from the mother whocooked and laundered for Matthew. At one point, the son left the family and ended up in a distant city. The parents learnedabout this one early morning when Matthew phoned them to request money. They felt the situation had become hopelessand beyond their control.In the coping   dimension, which manifested itself in the caregiver's self-doubts about being able to manage the situation,three themes emerged. In a third of the cases, the caregiver was baffled by the patient's behavior: was it an effect of theillness or of the personality? Margaret had decided to assume the care of her schizophrenic sister, Rose. She found Rose'sintrusiveness difficult to handle; her related emotional outbursts were putting a strain on Margaret's marriage. Margaret'shusband attributed the "tantrums" to Rose's getting her way too often. Since Rose was the youngest of five children,Margaret had often seen her get away with "things we older kids never did." Margaret was soon unable to determinewhether Rose's behavior was linked to her being "spoilt" as a young child or was a part of her illness.In a quarter of the cases, caregivers felt distress about how to meet the patient's dependency needs; there was acorresponding concern that they might be deprived of any life of their own. The young wife of a patient was particularlyaffected by this dilemma. Penny, a 23-year-old student, had been married for 3 years to Angelo, who had been diagnosed asschizophrenic 5 years ago. He depended on her for all activities. Because he was unemployed, he would meet Penny at theuniversity for lunch or between classes. He insisted on knowing all her plans. Penny found her lack of personal timefrustrating. For example, her attempts to swim alone were thwarted by Angelo who felt he had to come along for theexercise. Moreover, he complained that she swam too fast, leaving him trailing behind.The third theme, in an eighth of the cases, related to the caregivers' anxiety that their ways of coping might hamper the patient's adjustment. Peter, a 40-year-old bachelor with a long history of schizophrenia, was discharged into the care of hiselderly mother who was not enthusiastic about this move. She felt she would not be able to tolerate his poor eating habits,inadequate hygiene, and restlessness. She was also concerned that her impatience might hinder Peter's progress: she wasapt to lose her temper when he made a mess at mealtimes. Although she regarded special accommodation for Peter asunsuitable, she was anxious about her ability to cope for any length of time.The  family  dimensions of caregiving covered three themes, each relevant in about a third of the cases, and each involvinga dimension of the caregiver's experience in the immediate and/or extended family.In the first theme, the caregiver was involved in multiple caregiver roles, providing help not only to the schizophrenicrelative but also to one or more other members of the immediate or extended family who suffered from physical or mentalillness or had an intellectual disability. For example, Joyce cared for her two children, both in their twenties. Jeff had beendiagnosed as schizophrenic at age 16, and Elizabeth was autistic. Jeff did not care to dine with Elizabeth, often eating in his bedroom. Elizabeth commonly had distressing dreams that aggravated Jeff. Joyce had to confront the dilemma of copingwith the conflicting needs of the pair.In some families, the caregiver was burdened with tussles within the family about how best to manage the patient. Mrs.B, a 29-year-old mother with three children all under age four, was caring for her husband John, diagnosed asschizophrenic 5 years previously. Her mother-in-law believed that the illness was inadequately managed because of thenoisy and chaotic household. Moreover, she was convinced that consulting a faith healer twice weekly, at $120 per session,would cure her son. This view created conflict with Mrs. B who struggled to manage on a pension that barely paid for basicsustenance. She felt the money could have been better spent on childcare, which would have allowed her to spend moretime with John.The third family theme entailed criticism or lack of acknowledgment by family members of the caregiver's efforts. Mrs.P, a mother in her 60s, had cared for her daughter who had managed to cope with her schizophrenic illness over the previous 7 years. However, the eldest daughter, Mary, blamed Mrs. P for Elizabeth's illness. Mary would not relate to her mother at family gatherings and did not visit on Mother's Day. Mrs. P found this most painful, especially since Elizabethwas working part-time and contributing to household chores. Mary's children were also denied the chance to visit their grandmother, which caused immense sadness around birthdays because presents for the grandchildren remained unopened  _____________________________________________________________________________________________________________ 4  for months after the event.Two themes comprised the social dimension of caregiving. In 60% of the cases, the caregiver was dissatisfied with thehelp given by mental health services (Grella & Grusky, 1989). In about a third of the group, the caregiver was troubled bycommunity attitudes regarded as stigmatizing to both patient and family. Mrs. W was struggling to come to terms with17-year-old Sarah's first admission. She had spent 6 months in a hospital before her medication had been effective.Although Sarah's return home had been followed by such milestones as her shopping alone and visiting friends, Mrs. Wwas still reluctant to send her back to school for fear of students' ridicule. Furthermore, she avoided Sunday services lestshe would be asked "too many questions" by fellow parishioners. Principal Interventions We were surprised by the range of interventions applied by the counselors since they went well beyond the expectationsinforming our modified model. We had envisaged a predominance of problem-solving and related measures in keeping withthe aim of enhancing robust coping strategies or improving others that were relatively ineffective. Table 2 shows the four categories (identified by scrutinizing the counselor's notes) and their frequency of application: active listening, recognitionof the caregiver's experience, clarification of problems arising in counseling, and educational. Table 2  Principal Counseling Interventions and Their Frequency Cases(N = 30)CounselorN% A. SensitivityListens actively with a "third ear."30100B. Recognition of caregiver experience1. Acknowledges caregiver's experience301002. Draws on concept of universality     that caregiver is notunique301003. Provides a safe forum for catharsis19634. Praises caregiver's strengths and achievements301005. Acknowledges and legitimizes caregiver's personal needs2583C. Clarification of caregiver issues1. Helps to identify and clarify issues important to particular caregiver 10332. Collaborates with caregiver in problem solving16533. Offers guidance, mainly advice1033D. EducationalProvides information about illness, tailored to caregiver's needs1240 Active listening to the caregiver's "story" was a fundamental activity in every case    inherently therapeutic as well as ameans to introduce other strategies. The process depended on the counselor's sensitivity and empathy, both of whichenabled a "third-ear" attentiveness to multiple levels of communication, verbal and nonverbal. Active listening frequentlyfacilitated the emergence of latent caregiver concerns.The second category, the counselor's recognition of the caregiver's experience, comprised five frequent interventionsoccurring in two-thirds to 100% of the cases. In every case, the counselors acknowledged the caregiver's experience, bothits positive and negative features. Also in every case, counselors stressed the concept of universality, that the caregiver wasnot alone: other people in similar situations have comparable experiences. For example, one mother discussed her daughter's tendency to lie in bed until late morning, and the ways she had to nudge her to attend college. That this was acommon feature of the illness and that many other caregivers had made similar observations were explicitly discussed andunderstood.Providing a safe forum for ventilation of intense feelings, such as grief, anger, guilt, and shame, occurred in two-thirds of the cases. Such catharsis was inevitably associated with a measure of relief.Complimenting the caregiver by praising manifest strengths and experiences of mastery occurred in all cases; care wastaken to avoid any patronizing tone. Caregivers were commonly unaware of their strengths or of how well they had copedwith demanding circumstances.  _____________________________________________________________________________________________________________ 5
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