OBSESSIVE-COMPULSIVE DISORDER: Effects on Family Members

OBSESSIVE-COMPULSIVE DISORDER: Effects on Family Members
[Brief Report]
Cooper, Marlene Ph.D.1,2
1Fordham University Graduate School of Social Service, New York
2For reprints: Marlene Cooper, Ph.D., Fordham University Graduate School of Social Service, 113 West 60th Street, Room 72IF, New York, NY 10023
A revised version of a paper submitted to the Journal in June 1994.
Abstract
A study of 225 family members of individuals with obsessive-compulsive disorder, explored the greatest concerns of family members, examining the extent to which they found different kinds of OCD-linked behavior disturbing, and various resources helpful. Services to enhance family functioning are discussed.
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Obsessive-compulsive disorder (OCD) is a devastating illness that alters the lives of both patients and their family members. People with the disorder are plagued by repeated obsessions or compulsions, as well as by thoughts and behavior that seem senseless and frequently repugnant, and greatly restrict their occupational and social func-tioning. Many are completely dependent on their family members for care.
Estimates of the incidence of OCD in the United States range from four to six million people, making it one of the most common mental disorders (Rapoport, 1989). The prevalence rate of 2%(Steketee & White, 1990) is higher than that of schizophrenia, which is approximately one per 1,000 population (Kaplan & Saddock, 1992). Foa et al. (1983) reported on a sample of 72 patients who, at the time of the study, had experienced symptoms for a mean period of 11.1 years.
It has been suggested that OCD has a biological basis. Rapoport (1989) linked it to epilepsy, Tourette's syndrome, and Sydenham's chorea, reporting in her National Institute of Mental Health study on the promising effects of the drug clomipramine (Anafranil), which blocks the uptake of serotonin in the brain.
In the view of learning theorists, OCD is a set of learned forms of behavior that is a consequence of experience and is acquired through classical conditioning procedures. Behavioral therapy consists of exposure and response prevention, a treatment aimed at breaking the bond between feelings of discomfort and ritualizing (Foa & Kozak, 1986).
While psychopharmacology and behavioral therapy have proved helpful for many patients, others have not responded well. Many patients are misdiagnosed, frightened of change, or have obsessions and compulsions that are resistant to treatment. Unable to care for themselves because of the severity of their symptoms, they rely heavily on their families, whose lives are significantly altered by the misery of their loved ones.
Most of the literature on OCD addresses the individual with the disorder, but largely neglects the caregiving family. Anecdotal reports from families reflect their high levels of stress and the disruption of personal and social life. The literature on families of the mentally ill in general has often ascribed blame to parents (Lefley & Johnson, 1990; Terkelson, 1987; Walsh, 1985), and OCD families have not been exempt.
Rachman (1976) cited critical and perfectionist parental behavior as contributing to the pathogenesis or promulgation of OCD, and suggested that “checkers” (those OCD patients who must repeatedly verify stereotyped actions) were found in families where parents had high standards and were overcontrolling and critical. Other literature on families of persons with OCD offers strategies for parents to avoid upsetting their children, or techniques to prevent relapse. Steketee (1990) reported that negative responses by immediate family members (e.g., perceived criticism, angry reactions, and belief that the patient could control symptoms and was using them for manipulation) were associated with poor gains for the patient. A study by Livingston-Van Noppen and colleagues (1990) concluded that families with high affective responsiveness interfered with positive treatment gains for the patient. Tynes, Sains, and Win-stead (1990), in an uncontrolled small sample, suggested that significant others in the patient's social group too frequently responded with verbal criticism (mainly out of frustration), which has been associated with relapse.
Only in the very recent literature has the suffering of the family of an OCD patient received notice. MacGregor (1994) enumerated the many losses experienced by families of the mentally ill. In the external sphere, these include loss of income, privacy, normal family activities, pleasure, and freedom for caregivers. Internally, and more subtly, the losses are of self-esteem, sense of competence, and control; pleasure in a child's success; hope, security, and certainty about both the illness and the future; religious faith; and a positive sense of the past life of the family. MacGregor concluded that families of the mentally ill need validation for their grief if they are to overcome helplessness. The present author's own work with an ongoing psychoeducational group for families of OCD patients supports this belief (Cooper, 1993).
What distinguishes OCD families from other families of the mentally ill is the inextricable way that they are brought into the illness. OCD symptoms are all-encompassing, and the compulsions involve family members and the home itself. Nearly all affected children involve their parents, and sometimes siblings, in their rituals, thus dominating family life. Obsessive doubting and indecision also lead to family involvement, and the patient's search for reassurance leads to an ultimately dependent state (Marks, 1987).
Conflict is rife between spouses and siblings on how to respond to their OCD relative's behavior, particularly in the handling of the rituals endemic to that behavior (Livingston-Van Noppen et al, 1990). Family members frequently find themselves manipulated into co-dependent, enabling behavior, such as participating in rituals, in order to keep the peace (Cooper, 1994). Acts of violence are not uncommon among teenagers with OCD, and fear of their child often has parents walking on eggs. Relatives and extended family who do not understand the problem are often critical, adding to the parental burden (Rapoport, 1989).
Rapoport described mothers, especially, as feeling responsible for their sick children because they are closer to the situation and tend to approach it less intellectually than do their spouses. Marital discord, divorce, and substance abuse have been reported as a response to stress by Livingston-Van Noppen et al. (1990). Similar factors were reported by Hatfield (1978) in her seminal work on families of schizophrenics. Although the stress on family members seems obvious, mental health professionals do not routinely involve them in the patient's treatment and, when they do, it is often unhelpful. Grosser and Vine (1991), in a survey of family members of individuals with psychiatric disabilities, noted that two-thirds of the sample reported a lack of understanding by professionals of the problems faced in caring for the mentally ill, a perception that was also reported by Hatfield (1978).
METHOD
Sample
Families (the term includes fiancées) were recruited for the study through a request for volunteers in a nationally circulated newsletter published by the Obsessive Compulsive Foundation. A questionnaire was sent to 450 respondents, and this self-selected sample was cut off at 225 participants approximately three months after returns began to arrive. (Thanks to the large number of responses, only one mailing was necessary.)
Of the 225 participants, 181 had a relative aged 18 or over with OCD, while 44 had a child under age 18 with the illness. Almost 75% of the participants were women, of whom more than 50% were mothers of OCD patients; in fact, more than half the participating family members were parents of OCD patients. The rest of the participants were spouses (32%, N = 71), children (6%, N = 13), siblings (3%, N = 6), and fiancées (2%, N = 5) of people with OCD.
Only 16% of participants indicated yearly earnings less than $25,000; 40% reported earnings of $25,000-$50,000.
Of the relatives with OCD, 55% were reported to be male, and 36% to have contracted the illness before age 17 (50% of them before age 10). For 17% of OCD relatives aged 18 and over, onset of OCD was after age 30. Information about race was not elicited.
Measure
Respondents received a ten-item questionnaire that requested information on the characteristics of the family, the most troublesome behavior of their OCD relative, helpful resources, specific kinds of stress placed on them, help they had found for themselves and their OCD relative within the community, and their concerns about their loved ones.
They were asked to select types of behavior and problems (from a list including poor grooming, poor handling of money, lack of employment, depression, inflicting harm on self or others, and common OCD rituals) that had disturbed them during the past two years, and to rank the severity of the disturbance (ranging from “some” to “a great deal”). Respondents were also asked to select (from a list that included clergy, friends, relatives, support groups, lectures and reading) resources that had been helpful to them during the past two years.
From a list that included hospitalization, medication, and various therapeutic modalities, participants were asked to indicate those used by their ill relative during the last two years, and to what degree they had been helpful. Respondents were asked to signify their three major concerns about their OCD family member. Some options were: “What will happen to my relative when I am gone?” “How can I enjoy life when my relative has so much pain?” and “How can I let go of my anger/stop envying normal families/tell the truth to others about my relative's disorder?” Open-ended questions sought anecdotal responses about impact on family life and lessons from the experience that would benefit others facing the same situation.
Data Analysis
Responses were coded and analyzed using the Statistical Package for the Social Services. Multivariate techniques were used to identify patterns of association and correlations among the variables, and to develop a profile of the respondents. Data for participants were analyzed in two groups, depending on whether the ill relative was under 18 or over 17 years of age. Only data on the group with OCD relatives over 17 are reported here since their status as adults probably affects their relationships with family members both legally and emotionally, differentiating them from the younger group. Where responses of parents with OCD children under 18 differed significantly from those of participants with adult OCD relatives, they are noted.
RESULTS
Behavior Problems
TABLE 1 provides data on the disturbance occasioned to family members by various kinds of behavior associated with OCD. (It should be noted that not every respondent answered every question.)

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Table 1 DISTURBANCE TO FAMILY MEMBER CAUSED BY OCD BEHAVIOR
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The most frequently reported problem was that of depression; 90% of the participating family members reported that it caused them some or a great deal of disturbance. From the anecdotal responses of participants, it appeared that depression caused patients to withdraw in apparent emotional distress, and that this was very painful for families to witness. Attempted suicide was reported for 12% of relatives with OCD; in consequence, 41% of respondents indicated great stress and 59% some stress upon family members.
Obsessive ruminating (turning a thought over and over again in one's head), which caused much the same reactions as depression in patients and families, was the next most frequently disturbing behavior (N = 156). However, more than twice as many of these respondents were greatly (69%) than somewhat (30%) stressed, whereas the distribution was more equal (47% vs. 53%) in the case of depression.
Performing rituals, which troubled 82% of the respondents, was the third most upsetting type of behavior, followed by self-involvement, lack of motivation, manipulating behavior, inconsiderate behavior, and excessive arguing. Being drawn into ritualizing behavior troubled 58% of respondents with adult OCD relatives, compared to more than 75% of the respondents with OCD children under the age of 17.
More than half the respondents were disturbed by poor task performance, such as grooming, handling of money, and lack of employment. Noncompliance with medication was noted by 27%, and substance abuse by more than 10% of the respondents, the latter causing a level of distress similar to those of ruminating and unemployment, problems that were both considered highly disturbing by those family members reporting them.
Effects on Family Members
The extent to which the effects of OCD disturbed family members can be seen in TABLE 2. More than four-fifths of respondents reported disruption in the personal life of a family member, and the same percentage noted that the burden of care fell on one family member. Disruption of family social life was experienced by 75% of the sample, and 72% noted a loss of interpersonal relationships. Only 31% of the families did not cite marital discord as a result of OCD in the family. Loss of leisure was noted by 64% and almost as many mentioned hardship to siblings.

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Table 2 EFFECT OF OCD ON FAMILY MEMBERS
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Resources Helpful to Family Members
Data on the helpfulness of a variety of services to OCD families appear in table 3.

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Table 3 HELPFULNESS OF RESOURCES USED BY FAMILY MEMBERS
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Nearly four-fifths of family members said they attended lectures and read about the disorder, and only 4% who used them did not find these sources helpful; in contrast, all respondents with OCD children under 17 found lectures and reading materials helpful, 77% greatly and 23% somewhat, compared to 49% and 47%, respectively, among respondents with adult OCD relatives. Only about one-fifth of the sample found relatives and friends unhelpful, compared to 40% those with OCD children under 18. Group therapy was used by 69% of respondents, and it was as valuable to them as was family therapy to the 68% who used it. Family support groups, used by 71% of respondents, were found helpful by over 90% of attendees. Of the 80% of respondents who turned to the clergy, 42% found them of no help and 40% of only some help, making them the least valuable resource.
Resources Helpful to Patients
Medication was deemed to be the most significant and helpful resource for the OCD patient (89% of respondents reported that it was beneficial). Individual therapy was reportedly used by nearly as many OCD patients as used medication (84%), for most of whom it was evidently advantageous. Nearly half the respondents reported that their OCD relative used behavior therapy, and only 10% of these did not find it helpful. All the respondents with OCD children under age 18 reported that their children used individual therapy, but fewer than in the adult sample found it valuable.
Family therapy, self-help groups, and group therapy, which were reportedly utilized by 25% of the OCD relatives, were helpful to almost 95% of them. Twenty-four percent of OCD patients had been hospitalized, but it seemed to have helped only 15% of them.
Few respondents in the adult population noted a lack of availability of appropriate resources; those with OCD children were more likely to report unavailability of a service. Self-help groups were the least available resource for both groups.
Services Most Needed by Family Members
Respondents reported classes and workshops on how to cope with difficult OCD behavior to be the most needed service (57%) for families. Nearly half the sample said support groups for the family were necessary. Comprehensive health insurance and help in understanding the behavior of their OCD relative were both cited as necessary by over 40% of participants. One-quarter of the responding family members wanted greater understanding from family and friends, relief from financial distress, and therapy for themselves. Eleven percent said they needed respite care or wanted the OCD person removed from the home.
Greatest Concerns of Family Members
Forty-five percent of respondents listed their greatest concern as coming to terms with the lost potential of their OCD relative. Nearly 40% cited worry over what would happen to their relative once they themselves were unable to care for them. In this category, those with OCD children under age 18 showed significantly more (59%) concern. The third greatest concern (32%) was how to deal with their own anger. Twenty-nine percent noted that they could not enjoy life in face of the pain suffered by their OCD relative. Envy of “normal” families was listed by more than 25% of respondents, and how to heal the rifts in the family was listed by only slightly fewer. Although most families did not feel that they were to blame when their relative was not doing well, nearly 25% were still grieving for the relative they had known before the onset of OCD, or said that they could not tell the truth about the illness to extended family and friends. The potential for serious harm concerned 12%, and 6% were worried about serious legal problems
Sharing Experiences
Families were asked to discuss what they had learned from their experiences, and what they might tell others who were confronting OCD for the first time. They urged membership in the Obsessive Compulsive Foundation, openness and honesty about the problem, reading, becoming educated, and seeking out an OCD mental health specialist. Many spoke of their anger at mental health professionals for misdiagnosis of loved ones, inappropriate medication that worsened symptoms, therapy that was not helpful, and lack of (or disappointing) responses to the plight of the family. The unpredictability of the illness, pain experienced by family members, and uncertainty of outcome were themes about which they wrote in great detail.
DISCUSSION
Families ranked depression as the most disturbing behavior in their relatives, pointing up one of the risks inherent in this illness. The report of suicidal behavior by 12% of OCD relatives conforms to statistics on suicide among depressed persons in the general population (Kaplan & Sadock, 1988). However, it contradicts earlier reports by Turner and Michelson (1984) that OCD does not involve the risk of suicide. The relationship of OCD to depression has been investigated since the 1940s, and the incidence of depression has been estimated both in the range of 17% to 35% (Vaughn, 1976), and to involve virtually all patients (Turner & Michelson, 1984). Rasmussen and Eisen (1992) noted that two-thirds of OCD patients have a life-time history of major depression, while one-third have a major depression at the time of first evaluation. They also noted that the majority (85%) of those who are depressed have a mood disorder secondary to their OCD, while 15% appear to have a coexisting primary unipolar recurrent depression.
One of the participants, speaking of depression in her ill husband, wrote:
Panic sets in when I know my husband is heading toward a bad OCD episode, and then I have the anxiety of waiting for the depression to hit him The depression is worse than the OCD. The OCD is just irritating, but the depression blunts his personality, and he starts to look physically sick.
A husband, aged 64, stated:
OCD can be debilitating, destructive, dehumanizing to the patient beyond belief No one who does not have OCD can begin to understand the degree of suffering to one with the disorder. The condition causes pain of the highest magnitude, and is probably as bad or worse than any physical illness It's like getting cancer—you don't want it but you can't wish it away or make it go away.
Depression was a problem for participant family members themselves in this sample. Mourning for the child lost because of the illness was a common theme, as is illustrated by one mother's comment:
My pain will never go away…for the child who is gone—I know he's inside there somewhere but I'm afraid that he'll never be let out again My pain is for the life that he has lost, the experiences of his childhood that he'll never have, and for the future that is so uncertain.
Misdiagnosis of the disorder, therapy and medication that were not helpful, and noncompliance with medication were problems encountered by many of the respondents; all these factors were listed by Jenike (1990) as among the common reasons for treatment failure in OCD. Co-morbidity with depression (reported by 90% of the current sample) and substance abuse (reported by 10%) can only add to the difficulty of establishing a correct diagnosis. The importance of diagnosis is illustrated by a case (Cooper, 1990) in which the change from an ego-modifying therapeutic approach to one of behavior modification in an OCD client originally misdiagnosed with borderline personality disorder led to rapid improvement in eight weeks. If training in the detection of OCD were improved, it would help screening for a range of symptoms, and early intervention for obsessions and compulsions might help eliminate the need for patients to use drugs and alcohol for self-medication.
The value of support groups for OCD family members has been documented in the literature (Cooper, 1993; Livingston-Van Noppen, et al, 1990). Participants in the present study listed support groups as the second most helpful service, yet only 35 of them utilized this service. While the prospect of a group experience may be threatening to families, mental health professionals need to be aware of its benefits so that they can counteract this initial reaction and encourage its use by members of families with OCD relatives.
An important finding of the present study was the large number of adults with OCD who were unemployed and living at home, a probable factor in the financial difficulties listed by 66% of respondents. For adult patients diagnosed with schizophrenia, well-established community services (including day treatment centers, sheltered workshops, and residences that foster independent living skills) are available. Adults with OCD lack these resources; the family burden thus receives no amelioration, and the ill relative is left ultimately dependent on the family.
Previous reports of age of onset for OCD were not supported by findings from the present study. Research over the last 40 to 50 years has consistently found the average age of onset to be late adolescence or the early 20s, earlier for males (17.5 years) than for females (20.8 years) (Rasmussen & Eisen, 1990). The present investigation found late adolescence or early adult (ages 18–20) onset in only 8% of OCD patients. It is possible that increased public awareness about the disorder in recent years has resulted in earlier detection, Alternatively, the diagnosis of OCD in these families may have been made retrospectively.
While they wrote in great detail of the great hardships and emotional pain experienced by their families, these participants also made clear their love and devotion to their ill relative. In view of the devastating effects of the illness on family life, more family members might have been expected to resent the burden of care. However, only 11% of the sample expressed a wish that the OCD patient would move out of the house, or indicated that respite care was a needed service.
Limitations of the Study
Data regarding the ethnic and cultural profile of the respondents was not gathered, leaving questions about the diversity of the sample. At a recent conference of the Obsessive Compulsive Foundation, held in Minnesota, only one of 400 attendees was African-American. The lack of ethnic diversity among diagnosed OCD patients has been studied by Lewis-Hall (1991), who cited different utilization of mental health resources, potential differences in presentation of the problem, and cultural influences as reasons for overlooking OCD among minority populations. Grosser and Vine (1991), in a survey of characteristics and service needs of families of the mentally ill, found their respondents to be largely restricted to parents, primarily from white, middle-class backgrounds, who were involved in an advocacy organization. They concluded that a self-selection process might have been associated with membership in the organization, and that the resultant group might not be representative of all families involved in the care of mentally ill persons.
This self-selection process may also effect the generalizability of the present study, as the sample was selected from families receiving an Obsessive Compulsive Foundation newsletter, indicating a population searching for information about the disorder. While there is no reason to believe that this group's profile would not be similar to that of the larger population of OCD families, it is possible that its members have a somewhat higher incidence of problems, hence their search for help. However, this has yet to be determined.
Another study limitation was the lack of specificity in the questionnaire regarding substance abuse. As a result, respondents may have interpreted the question to mean drug use, drug and alcohol use, or even prescription drug use. Because OCD is easy to misdiagnose, data regarding co-morbidity with alcoholism and drug use would be useful.
A further limitation was a lack of specifity about the model of individual therapy utilized by OCD patients. More information about why it was considered successful is needed so as to gain a better under-tanding of the efficacy of various treatment options.
CONCLUSION
The impact of OCD on family members is clear from the findings of the present study. Especially striking about these respondents was their great interest in participating. Abundant personal comments on questionnaires and numerous telephone responses testified to their sense of urgency and desperation
The preponderance of depression and the risk of suicide are findings that demand attention. Financial problems, hardship to siblings, marital discord, and disruption of the personal and social lives of the family members are part of the overall devastation wrought by this illness. The fact that so many families were directly involved in bizarre rituals for the sake of harmony is relevant to issues of co-dependency and family dysfunction.
Of greatest concern to participants—listed by 45% of them—was their inability to come to terms with the lost potential of their loved one. Two-fifths of the families said that they could not enjoy life when their relative was in so much pain. It is essential that families be helped to overcome these negative reactions. They need to know what to expect. They need specific information about treatment resources and demonstrated outcomes so that they can gain access to the right kind of help. They need to know of effective strategies for dealing with OCD behavior, and how to extricate themselves from participation in rituals. They need help in expressing their anger, grief, and sense of loss, as well as with managing stress and enjoying life. Families will be better able to come to terms with this illness if the mental health professionals whose help they seek are well informed and have themselves come to terms with OCD's potential to destroy family life. Only then can the needs of these families be adequately addressed.
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