Am. J. Hum. Genet.

48:145-153, 1991

Mothers' Postcounseling Beliefs about the Causes of Their Children's Genetic Disorders
Jon Weil
Program in Genetic Counseling, School of Public Health, University of California, Berkeley, and Department of Pediatrics, University of California, San Francisco

Summary Mothers' postcounseling beliefs about the causes of their children's genetic disorders were investigated by means of a Q-sort consisting of 54 statements of possible beliefs that were sorted into nine groups of six items each on the basis of congruence with the subjects beliefs. The subjects were well educated, knowledgeable about the genetics of their child's disorder, and indicated a high level of belief in genetic causes. Differences in beliefs were associated with differences in genetic etiology, indicating that beliefs were affected by the specific information provided in genetic counseling. Factor analysis identified a cluster of Q-sort items characterized by a highly personal relationship to the cause of the disorder (e.g., personal attributes, being selected and blessed, and God's actions). Subjects who rated these items low had a belief pattern, designated impersonal, that was consistent with a scientific worldview and that indicated psychological distancing from the cause of the child's disorder. Subjects who rated these items high, the personal belief pattern, had a mixture of scientific and nonscientific beliefs that indicated a sense of personal involvement in the cause of the child's disorder. Subjects with the two belief patterns were equally knowledgeable about the genetics of the disorder. Thus, the personal belief pattern did not appear to interfere with acceptance or understanding of the information provided in genetic counseling.
Introduction Genetic counseling, as commonly defined and practiced, addresses the counselee's need for relevant factual information as well as the complex process of psychosocial adjustment to an existing or potential disorder (Ad Hoc Committee on Genetic Counseling 1975; Sorenson et al. 1981). The factual information contributes to an understanding of the cause, nature, and probable

consequences of the disorder and presumably supports the cognitive aspects of decision making. However, its role in the genetic counseling process is also much more complex. The counselee may misperceive, misunderstand, or distort the information, thus altering its intended meaning, and the information may have signifi-

Received July 1, 1987; revision received August 29, 1990. Address for correspondence and reprints: Dr. Jon Weil, Program in Genetic Counseling, Room 221, Building T-7, University of California, Berkeley, CA 94720.
i 1991 by The American Society of Human Genetics. All rights reserved.

0002-9297/91/4801-0020$02.00

cant emotional impact which affects the counselee's adjustment. Among the types of information provided in genetic counseling, that involving etiology has considerable psychological significance. In an investigation of the topics that counselees wished to discuss in genetic counseling, Sorenson et al. (1981) reported that the most frequently cited topic was the etiology of the disorder. Among parents of children with severe, chronic diseases there is frequently an intensely felt need to find an explanation or cause of the child's disorder (Mandelbaum and Wheeler 1960; Tisza 1962). Information concerning the cause of the disorder may influence a number of psychological processes, including feelings of guilt, the coping and defense mechanisms of intellectualization and control through thinking, and the need to perceive the event as part of an orderly and meaningful world (Tisza 1962; Moos 1977; Thompson 1981; Kessler et al. 1984). Investigations of counselees' understanding of the etiology of specific disorders have given varying results. Whereas some studies have reported that a substantial
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Weil postgraduate education, an additional 56% had attended or completed college, and only 2% had not completed high school. At the time of the study, the average age of the affected child was 4.2 years (range 0.5-12.5), and the average time since last clinic visit was 3.2 years (range 0.5-7.5). Forty-nine percent ofthe disorders were monogenic, 34% were chromosomal (23% Down syndrome), 11% were multifactorial, and 6% were unclassified. The study was carried out under a protocol approved by the University of California, San Francisco, Committee on Human Research.
Q-Sort A 54-item Q-sort was utilized to obtain and analyze data on beliefs about the cause of the child's disorder.

majority of counselees knew the etiology (Emery et al. 1972; Leonard et al. 1972; Halloran et al. 1976; Antley 1977), others have found that the majority had inadequate knowledge (Sibinga and Friedman 1971; McCrae et al. 1973). In addition, Sibinga and Friedman (1971) documented significant distortions in the responses of half their subjects. One way to address the broader context within which information about etiology is perceived and processed is to investigate counselees' beliefs about the cause or causes of the disorder. While counselees' beliefs may be influenced by the information provided in genetic counseling, this information may also be rejected or distorted because of denial, repression, or the shock following diagnosis (Leonard et al. 1972; McCrae et al. 1973). In addition, the information may be at variance with other beliefs, such as religious ones, held by the counselee. A variety of investigations indicate that the ability to cope with serious adverse events, including the serious illness of a child, are affected by beliefs about the cause of the event (Thompson 1981). An individual's belief system may be conceptualized as providing the cognitive, affective, and behavioral basis on which the world is perceived and responded to (Rokeach 1968; Bem 1970). Thus an understanding of counselees' beliefs about the causes of the genetic disorder may aid in understanding their responses to the disorder and the information provided in genetic counseling. Previous studies have demonstrated wide variation in beliefs about the causes of diseases and medical symptoms (Abrams and Finesinger 1953; Bard and Dyk 1956; Mabry 1964; Markson 1971; Elder 1973). However, to my knowledge there has been no systematic investigation, after genetic counseling, of beliefs about the cause of genetic disorders. The present paper reports the results of such a study.
Subjects and Methods
Subjects

Each item consisted of a statement of possible belief about the cause. Items were generated from a pool of statements obtained in audiotaped interviews with mothers ofchildren affected with genetic and nongenetic disorders, augmented with statements obtained from interviews with genetic counselors and from the literature on psychosocial responses to genetic and other childhood disorders (Owens 1964; Ross 1964; Butani 1971; Fletcher 1972; Wexler 1979). The Q-sort was constructed from this pool of statements according to standard criteria (Block 1961; Nunnally 1967) and was administered by mail along with a questionnaire and informed-consent form. Subjects were instructed to sort the items into nine groups of six cards each (forced rectangular distribution) on the basis of how well each statement agreed with beliefs about the cause or causes of the child's disorder. Group 9 consisted of the six items most congruent with the subject's beliefs, and group 1 consisted of the six items least congruent with beliefs. Thus each item could be treated as a variable with possible values 1-9, with higher values indicating more strongly held beliefs.
Factor Analysis

Subjects were identified through the Genetics Clinic of the University of California, San Francisco, and its satellite clinics. They consisted of women who had received genetic counseling for a child affected by a disorder of genetic etiology. Each was requested by mail to participate in a study concerning her understanding and beliefs about the cause or causes of her child's disorder. Of 390 who met the criteria for inclusion, 111 (28%) agreed to participate and provided usable data. The subjects were well educated: 19% reported some

The data were analyzed by factor analysis using the method of principal components (Nie et al. 1970; Theil 1971). Factor analysis identifies groups of Q-sort items whose ratings are correlated. The first factor represents that linear combination of all items that accounts for the largest possible proportion of the total variance. Subsequent factors are similarly derived, on the basis of the variance that is unaccounted for by preceding factors. For purposes of data reduction, a first factor score was calculated for each subject, on the basis of her ratings of those Q-sort items that had high loading on (i.e., high correlation with) the first factor. The equation was derived by iterative multiple regression analy-

Mothers' Postcounseling Beliefs

sis in which (a) the principal component was treated as independent variable and (b) relevant Q-sort items were treated as dependent variables (Weil 1984).
Questionnaire

147

volve fate, chance, and lack of knowledge and understanding ofthe cause. Thus, when surveyed as a whole, these women indicated a strong and general belief in a genetic basis for their child's disorder.
Differing Patterns of Beliefs

A questionnaire was used to investigate demographics, sources of emotional and psychological support, knowledge of the child's disorder, and other topics. Knowledge of the child's diagnosis was determined by two questions asking for the name of the disorder and a brief description of its main features. Knowledge of recurrence risk was tested with a multiple-choice question involving recurrence risks of 0%, 1%, 10%, 25%, 50%, and 100%, answered separately for male and female children. Knowledge of etiology was tested with eight true/false questions relevant to different modes of inheritance (e.g., "It is caused by a gene from both of us"), of which only those modes relevant to the specific child's disorder were scored. Answers to the above questions were scored by reference to the written clinic report(s) sent to the subject after genetic counseling, which were obtained from clinic records.
Results

Table 1 lists the 10 Q-sort items (statements) that received the highest average ratings among all subjects. Among these, statements involving genetic causes predominate. The general statement "It happened because of something in the genes or chromosomes" received highest average rating. Three statements involving explicit genetic mechanisms (mutation, chromosomes or genes from the mother, chromosomes or genes from the father) and two that indirectly indicate a genetic cause are also included. The remaining statements in-

Table I
Q-Sort Items with Highest Mean Values
Mean Value
8.85 . 7.68 .

Abbreviated Statement

7.46 . 7.41 . 7.40 . 7.34 . 7.21 . 7.15 . 6.95 . 6.54 .

Something in the genes or chromosomes A change or mutation in the genes or chromosomes For some reason, though I may never know why Chance Chromosomes or genes from me Something was wrong with the egg or sperm I don't know why Something went wrong at conception Chromosomes or genes from the father Fate

To analyze further the Q-sort data and identify groups of covarying items, the data were subjected to factor analysis (see Subjects and Methods). Four factors were identified which accounted for 38% of the total variance. On the basis of the items that they comprised, they were designated, respectively, the "personal;' "uncertainty,' "guilt;' and "genetic" factors. Subsequent analysis was confined to the first, or personal, factor, which accounted for 16% of total variance. Items with high positive loadings included two religious statements plus statements that involve a highly personal relationship to the cause of the disorder. The latter included positive and negative attributes of the mother; being singled out, blessed, and tested; and personal growth and change. The items with high negative loadings involved a wide variety of environmental substances and agents such as pollution, radiation, medication, alcohol, and smoking. The nature of the items comprised by the personal factor suggested that subjects with different responses to these items might have significantly different patterns of beliefs. To investigate this, a personal factor score was calculated for each subject on the basis of her ratings of these items (see Subjects and Methods). The distribution of scores was unimodal and approximately symmetrical, and the responses of subjects whose scores fell in approximately the upper and lower 20% of this distribution (n = 19 and n = 22, respectively) were selected for further analysis. Table 2 presents the Q-sort responses ofthose mothers who had lowest personal factor scores. They believed most strongly in a genetic basis for their child's disorder. Their next most strongly held belief was that the disorder resulted from substances or agents in the environment. They believed least in the actions of God and in causes such as punishment and retribution; thoughts and feelings; personal weakness and vulnerability; and being chosen, singled out and blessed. This pattern of beliefs appears to involve a scientific worldview. Belief in genetic and environmental causes is consistent with scientific explanations for the disorder, and those causes least believed are antithetical to a scientific worldview. Thus the belief in genetics appears to be consistent with the broader pattern of beliefs. Table 3 presents the responses of those mothers who had highest personal factor scores. Among the items

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Table 3
The Personal Belief Pattern: Beliefs of Mothers (n = 19) with Highest Personal Factor Scores

Table 2
The Impersonal Belief Pattern: Beliefs of Mothers (n = 22) with Lowest Personal Factor Scores

Mean Value

Abbreviated Statement

Mean Value

Abbreviated Statement

Highest mean values: 8.91 ....... Something in the genes or chromosomes Chromosomes or genes from me 8.14 ....... 8.05 ....... Something was wrong with the egg or sperm Chromosomes or genes from the father 8.05 ....... I don't know why 7.50 ....... Chemicals or pollution 7.14* ....... Medication I took 6.82* ....... Foods or beverages 6.41 * ....... The father was exposed to radiation 6.32* ....... Something in the father's family 6.32* ....... 6.32* ....... Medication the father took I used alcohol or drugs 5.77* ....... I or the father smoked 5.50* .......
Lowest mean values: I was chosen or selected 2.91* ........ Thoughts I had or things I said 2.73* ....... My feelings during intercourse 2.73 ....... A blessing or gift 2.73* ....... I was weak or vulnerable 2.50* ....... I was singled out 2.41 * ....... To even or balance the score 2.32* ....... 1.82* ....... To punish me God caused it 1.77* .......
NOTE. - In this and table 3, some statements that are redundant or do not differ significantly in the two tables have been deleted to simplify presentation. * P < .006 (t-test for difference of mean value between mothers with lowest [this table] and highest [table 3] personal factor scores).

Highest mean values: 8.74 ....... Something in the genes or chromosomes Chromosomes or genes from me 7.89 ....... I was chosen or selected 7.74* ....... I can take care of a child with such problems 7.63 ....... So I would become stronger 7.58 ....... A blessing or gift 7.53* ....... God caused it 7.37* ....... Fate 7.21 * ....... I don't know why 7.16 ........ So I would become more accepting and 7.05* ....... compassionate A change or mutation in the genes or 7.00 ....... chromosomes Something was wrong with the egg or sperm 6.58* ....... I am being tested 5.95* ....... I was singled out 5.89* ....... Chromosomes or genes from the father 5.68 .......
Lowest mean values: I had an accident or injury 2.95* ....... Child had an accident or injury 2.68* ........ I was exposed to radiation 2.53* ....... The father was exposed to radiation 2.47* ....... Doctor or someone at hospital made a mistake 2.37* ....... or error I used alcohol or drugs 2.21 * ....... 2.16* ....... Medication the father took I or the father smoked 2.05* .......

* P < .006 (t-test for difference of mean value between mothers with highest [this table] and lowest [table 2] personal factor scores).

rated most highly, genetic statements are interspersed with religious statements and with statements that involve being blessed and chosen, the ability to take care of the child, and the opportunity for personal growth. The items with lowest ratings involve environmental agents and external events such as accident, injury, and medical error. Thus this pattern includes a mixture of scientific and nonscientific beliefs. In addition to differences in content, the two patterns of beliefs just described also indicate differences in psychological orientation. The responses of the subjects with high personal factor scores indicate a sense of personal involvement in the occurrence of their child's disorder. Their beliefs include personal attributes and opportunities as well as a special personal place in the scheme of things. Causes that are least believed involve external events that are largely outside personal con-

trol. On the basis of these characteristics, the belief pattern of these subjects is designated "personal." In contrast, the beliefs of subjects with low personal factor scores suggest a more impersonal, psychologically distancing orientation. Causes that are largely outside personal control are believed most strongly, whereas causes that involve thoughts, actions, personal attributes, or a personal place in the scheme of things are least believed. An impersonal orientation is also suggested by the rank order of statements involving environmental agents. Chemicals and pollution, over which there is little personal control, were rated highest. Radiation, medication, foods, and beverages, where personal control is limited by medical necessity or lack of information, were rated next. Drugs, alcohol, and smoking, which are under personal control, were rated lowest.

Mothers' Postcounseling Beliefs

On the basis of these characteristics, this pattern of beliefs is designated "impersonal."
Variables Associated with Personal Factor Scores To assess the subjects' sources of information and emotional support in coping with their child's disor-

149

Table 4
Mothers of Children Who Inherited a Monogenic Disorder: Items with Highest Mean Values

Mean Value

Abbreviated Statement

der, they were asked to rate a variety of potential sources on a scale of 0 (did not seek information or support) to 3 (very helpful). As sources of information, physicians and genetic counselors were rated highest (average rating 2.37), followed successively by books and magazines, family, other parents, parent support groups, friends, and TV and radio (average rating 0.66). Personal factor scores were not correlated significantly with the rating of any of these sources. Among sources of emotional support, family was rated highest (average rating 2.39), followed successively by friends, physicians, genetic counselors, prayer, other parents, parent support groups, church attendance or activities, clergymen, and psychotherapists or counselors (average rating 0.69). Support from prayer was correlated with personal factor scores (Kendall's tau-b = .18; P = .01), as were support from clergymen (tau-b = .15; P = .04) and church attendance or activities (tau-b = .14; P = .05). These data confirm the role of religious beliefs in the personal belief pattern and indicate one aspect of behavior that is associated with these beliefs. There was also a relation between the subject's level of education and personal factor scores, with higher education associated with lower scores (tau-b = -.15; P = .03). The relationship is illustrated by the subjects with personal and impersonal belief patterns (highest and lowest 20% of personal factor scores, respectively): among the former, 42% had a high school education, 53% had attended college, and 5 % had graduate training; among the latter, the frequencies were 23%, 45%, and 32%, respectively.
Etiology and Beliefs

8.88 ......... 8.58* ......... 7.72* ......... 7.42* ......... 7.21 * .........
......... 7.1 7.15* .........

Something in the genes or chromosomes

Chromosomes or genes from me Chromosomes or genes from the father Something in my family I can take care of a child with such problems Chance A change or mutation in the genes or chromosomes

* P < .05 (t-test for difference of mean value in this table and table 5).

mosomal mutations (de novo autosomal dominant and X-linked mutations, sporadic aneuploidy; n = 54). (The number of multifactorial disorders was insufficient for statistical analysis.) Table 4 lists the Q-sort responses of mothers whose children had inherited a monogenic disorder, while table S presents the results for mothers whose children had a new monogenic or chromosomal mutation. Consistent with the information given in genetic counseling, women in the former category believed most strongly in inheritance from the mother or father while those in the latter category believed most strongly in mutation. However, the beliefs of the two groups differed in other respects as well. Mothers of children with a new mutation were more uncertain about the cause of the disorder. In addition, as shown in table 6, they believed

Table 5
Mothers of Children with a New Mutation: Items with Highest Mean Values

The specific information provided in genetic counseling varies with the etiology of the disorder. To investigate whether differences in information were correlated with differences in beliefs, the relationship between beliefs and etiology was analyzed. For this purpose the disorders were divided into two categories: those in which the disorder was inherited from one or both parents (autosomal recessive, autosomal dominant with one affected parent, X-linked with heterozygous mother; n = 33) and those resulting from monogenic or chro-

Mean Value

Abbreviated Statement

8.87 .. Something in the genes or chromosomes A change or mutation in the genes or chromosomes 8.20* * .. 8.04* *.. Something went wrong at conception For some reason, though I may never know why 7.94* .. Chance 7.91 .. 7.87* .. Something was wrong with the egg or sperm 7.78** .. I don't know why

*P <
*

.05. *P < .01

(t-test for difference of mean value in this table and

table 4).

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more strongly in a broad spectrum of causes associated with environmental substances or agents. These differences can also be related to information about the two classes of disorders. The explanation for an inherited disorder is relatively complete, in that it includes the origin and manner of transmission of the abnormal gene. In contrast, a new mutation is a rare, sporadic event whose specific cause and mechanism are unknown. This accounts for the greater uncertainty among mothers of children with new mutations. Their greater belief in environmental causes is consistent with the publicity and information about the mutagenic activity of many environmental agents and may result from information obtained in genetic counseling or from other

Weil
Knowledge of the Child's Disorder The subjects' knowledge of their children's disorders was determined by questionnaire (see Subjects and Methods). All demonstrated knowledge of the diagnosis by answering at least one of two relevant questions correctly, and 97% answered both correctly. Eightyone percent correctly answered a question about etiology, and 65% demonstrated knowledge of the recurrence risk. Neither knowledge of recurrence risk nor

sources.

There was a significant relationship between etioland personal factor scores, with mothers of children with new mutations having, on average, lower scores (P = .006, by t-test). In a further evaluation of the 14 Q-sort items that contribute to the personal factor score, the five items that involve environmental factors made the major contribution to this relationship, and their joint relationship to etiology was highly significant (P < .0001, by t-test). In contrast, the joint relationship of the nine items involving personal attributes and religious causes to etiology was not statistically significant (P = .10). Thus the relationship between etiology and personal factor scores can be primarily explained by the relationship discussed in the preceding paragraph.
ogy

knowledge of etiology was significantly associated with education, nor were they significantly associated with one another. The personal factor scores of women who knew the recurrence risk were not significantly different from the scores of those who did not (P = .1, by t-test), although the average score of those who did was slightly lower. Similarly, there was no significant difference among women who did and did not know the etiology (P = .2), and in this case the average score of those in the former category was slightly higher. Similar nonsignificant trends were found in comparisons of the women with personal and impersonal belief patterns. Thus there is no evidence that the two different belief patterns are associated with different levels of understanding of the information provided in genetic counseling.
Discussion

Previous investigators have reported a wide variety

Table 6
Comparison of Items Involving Environmental Substances: Mutant versus Inherited Etiologies
MEAN VALUE AMONG MOTHERS OF CHILDREN WITH

New Mutation
6.74 5.59 5.56 5.33 4.76 4.74 4.72 4.54 4.54 4.06

Inherited Disorder
4.64* * 4.73 4.15** 4.52* 3.76* 3.45* * 4.06 3.27* 3.09* 3.18

ABBREVIATED STATEMENT

Chemicals or pollution Medication I took I was exposed to radiation Food or beverages Medication the father took I used birth control pills The father was exposed to radiation The father used alcohol or drugs I or the father smoked I used alcohol or drugs

*P < .05.
*

*P < .01;

t-test.

Mothers' Postcounseling Beliefs

151

of beliefs about the causes of medical disorders (Abrams and Finesinger 1953; Bard and Dyk 1956; Mabry 1964; Markson 1971; Elder 1973). The results of the present study differ in that, despite a variety of other beliefs, the subjects uniformly indicated belief in a genetic basis for their child's disorder. This consistency of belief may be a consequence of the fact that all subjects had received genetic counseling for a disorder of genetic etiology, in which they received a genetic explanation based on scientific data and reasoning. However, the subjects were informed that the study was carried out under the auspices of the genetics clinic, and some may have been motivated to conform to assumed expectations of the investigator or clinical personnel in reporting beliefs in genetic causes. Consistent with both their stated belief in genetic causes and their relatively high level of knowledge, the subjects' beliefs were influenced by the specific information provided in genetic counseling. Their beliefs reflected the specific genetic process involved but also indicated sensitivity to the degree of completeness of the genetic explanation and concern about the possible role of environmental agents in causing genic and chromosomal mutations. The latter finding suggests it would be appropriate to investigate and address concerns about environmental agents when counseling parents of a child who has a de novo monogenic or chromosomal disorder. The major source of variation in the present study, the personal/impersonal belief spectrum, may be analyzed in terms of both apparent congruence with scientific explanations and implied psychological distancing from the occurrence of the child's disorder. The beliefs of subjects at the impersonal end of the spectrum appear consistent with a scientific worldview. These subjects believed most strongly in a genetic basis for the disorder and believed least in causes antithetical to a scientific worldview. Their belief in the role of environmental agents is also compatible with the scientific viewpoint. Thus their belief in genetics is consistent with the broader pattern of beliefs. The beliefs of subjects at the personal end of the spectrum were more complex. They believed strongly that their personal attributes played a role in the occurrence of the child's disorder; that they were chosen, selected or blessed; that the disorder occurred as a test or an opportunity for personal growth; and that God's actions were involved. Thus they have a coherent pattern of beliefs that is apparently at variance with the worldview implicit in the genetic explanation for their child's disorder. However, they also believed there was a genetic

basis for their child's disorder, and their factual knowledge was similar to that of mothers with impersonal beliefs. Therefore, although mothers with the personal belief pattern may have beliefs that are at variance with the scientific worldview, these beliefs need not necessarily be in conflict with the scientific worldview, at least where the child's disorder is concerned. A more complete understanding of these results must take into account the psychological implications of the belief patterns designated "personal" and "impersonal'" Subjects with the personal belief pattern attributed their child's disorder to their personal attributes, actions, and place in the world, thus indicating a sense of psychological responsibility. In contrast, subjects with the impersonal belief pattern attributed the disorder to causes largely outside personal control, a fact suggesting psychological distancing from the occurrence of the child's disorder. This interpretation is, in general, supported by the causes that were least believed. Thus, mothers who believed most in impersonal causes believed least in causes that are personal, and vice versa. The one apparent exception involves the very low rating given by mothers with personal beliefs to causes involving smoking, alcohol, and drugs. Information relevant to this was obtained during the interviews conducted for development of the Q-sort (see Subjects and Methods). Of 15 mothers interviewed, four expressed strong religious beliefs. Three of these spontaneously rejected smoking, drinking, and/or drugs as causes of their children's disorders because neither they nor their husbands used these substances. In contrast, among the remaining mothers, one rejected all three causes while three indicated that two or three of these substances were of concern because they had been used before or during pregnancy. If these results apply to the subjects of the main study, they suggest that many subjects with the personal belief pattern may have rated causes involving smoking, drinking, and drugs lowest because they did not use these substances. Viewed this way, their responses are consistent with a sense of personal involvement in the occurrence of their child's disorder. A number of studies have investigated the role of beliefs in adapting to adverse events. Chodoffet al. (1964), studying parents of children with fatal cancers, found that the search for meaning in the child's disease was an important part of the coping process. Bulman and Wortman (1977), studying paraplegic and quadraplegic accident victims, concluded that coping was facilitated when the victims believed there was an orderly relationship between behavior and outcome, which repre-

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sents a need to experience the world as orderly and meaningful. In reviewing-the literature, Thompson (1981) concluded that the meaning assigned to an adverse event significantly affects the individual's ability to cope with it. Coping is facilitated when the individual believes the event was part of an orderly and meaningful world, that it had positive as well as negative consequences, or that it provided a means for achieving desired outcomes. These aspects of meaning are represented in the personal belief pattern, suggesting that these beliefs play an important role in the adjustment of those mothers who hold them. However, the presented data in no way indicate that subjects whose beliefs lie at the impersonal end of the spectrum adjust less well. Further investigation of the relationship between the personal/ impersonal belief spectrum and adjustment to the child's disorder would be valuable, especially since the personal factor identifies one of the major sources of variation in beliefs. The findings reported here are subject to several methodological considerations. First, the subjects were self-selected and may not be representative of the genetics clinic population as a whole. Their agreement to participate may have been influenced by a variety of factors associated with beliefs, of which a strong belief in genetic causes may be one of the most relevant. Second, as discussed above, their responses, especially with respect to belief in genetic causes, may have been influenced by their knowledge of the association between the investigator and the genetics clinic. These factors may have contributed to the uniform belief in genetic causes and to the presence of scientific as well as nonscientific beliefs in the personal belief pattern. They are also relevant to the high rating given physicians and genetic counselors as sources of information. They appear less likely to have influenced the differences between the personal and impersonal belief patterns, unless to reduce them, and they presumably do not compromise the observation that knowledge of the child's disorder is not correlated with personal factor scores. Third, differences in knowledge of the child's disorder were only assessed with two questions. More detailed evaluation might have revealed a relationship between beliefs and knowledge. Finally, each subject's beliefs were investigated at a single time, and the interval since the last genetic counseling session was quite varied. As a consequence, the data provide no information about changes in beliefs over time, possible relationships between beliefs and knowledge at specific time intervals, or the relative importance of genetic counsel-

ing compared with other sources of information or beliefs. The findings reported here may have practical implications for genetic counseling, at least among welleducated counselees such as those represented in the current sample. The results suggest that, within appropriate limits, counselee's personal and religious beliefs concerning the cause of the disorder should be accepted and supported. This assumes that the counselee's psychological defense mechanisms are functioning in an optimal midrange that facilitates coping and adaptation (Chodoff et al. 1964; Froeber 1964). It does not preclude the need to identify and address beliefs that are grandiose, delusional, or otherwise dysfunctional. In addition, beliefs that initially facilitate coping may, in the face of continuing adverse events, lead to disillusionment and less effective coping (Zuk 1962; Lowery and DuCette 1976; Bulman and Wortman 1977). However, within these limits, support ofpersonal and religious beliefs would appear to facilitate coping and adaptation, without seriously limiting acceptance and understanding of the factual information provided in genetic counseling.

Acknowledgments
I wish to thank Stephen Pittel and Seymour Kessler for their advice and assistance and Charles Epstein for his personal and institutional support throughout the course of this project. I also thank Beth Crawford for many useful discussions and Richard Juster for consultation concerning the statistical analysis. This work is part of a dissertation presented to The Wright Institute, Berkeley, CA, in partial fulfillment of the requirements for the Ph.D. degree in Social-Clinical Psychology. It was supported in part by Grant MCJ-445 from Maternal and Child Health Services, Bureau of Health Care Delivery and Assistance, Department of Health and Human Services, to the Department of Pediatrics, University of California, San Francisco.

References
Abrams RD, Finesinger JE (1953) Guilt reactions in patients with cancer. Cancer 6:474-482 Ad Hoc Committee on Genetic Counseling (1975) Genetic counseling. Am J Hum Genet 27:240-242 Antley RM (1977) Factors influencing mothers' responses to genetic counseling for Down syndrome. In: Lubs HA, de la Cruz F (eds) Genetic counseling. Raven, New York, pp
97-108

Bard M, Dyk RB (1956) The psychodynamic significance of beliefs regarding the cause of serious illness. Psychoanal Rev 43:146-162

Mothers' Postcounseling Beliefs

Bern DJ (1970) Beliefs, attitudes, and human affairs. Brooks/ Cole, Belmont, CA Block J (1961) The Q-sort method in personality assessment and psychiatric research. CC Thomas, Springfield, IL Bulman RJ, Wortman CB (1977) Attributions of blame and coping in the "real world": severe accident victims react to their lot. J Pers Soc Psychol 35:351-363 Butani P (1971) Reactions of mothers to the birth of an anomalous infant: a review of the literature. Matern Child Nurs J 3:59-76 ChodoffP, Friedman SB, Hamburg DA (1964) Stress, defenses and coping behavior: observations in parents of children with malignant disease. Am J Psychiatry 120:743-749 Elder RG (1973) Social class and lay explanations of the etiology of arthritis. J Health Soc Behav 14:28-38 Emery A, Watt M, Clack E (1972) The effects of genetic counseling in Duchenne muscular dystrophy. Clin Genet 3:147150

153
Markson EW (1971) Patient semiology of a chronic disease. Soc Sci Med 5:159-167 Moos R (ed) (1977) Coping with physical illness. Plenum, New York Nie NH, Hull CH, Jenkins JG, Steinbrenner K, Bent DH (1970) Statistical package for the social sciences, 2d ed. McGraw-Hill, New York Nunnally JC (1967) Psychometric theory. McGraw-Hill, New York Owens C (1964) Parents' reactions to defective babies. Am J Nurs 64:83-86 Rokeach M (1968) Attitudes. In: Sills DL (ed) International encyclopedia ofthe social sciences. Vol 1. MacMillan, New York, pp 449-458 Ross AO (1964) The exceptional child in the family. Grune & Stratton, New York Sibinga MS, Friedman CJ (1971) Complexities of parental understanding of phenylketonuria. Pediatrics 48:216-224 Sorenson JR, SwazeyJP, Scotch NA (1981) Reproductive pasts, reproductive futures: genetic counseling and its effectiveness. AR Liss, New York Theil H (1971) Principles of econometrics. Wiley, New York Thompson SC (1981) Will it hurt less if I can control it? a complex answer to a simple question. Psychol Bull 90: 89-101 Tisza VB (1962) Management of the parents of the chronically ill child. Am J Orthopsychiatry 32:53-59 Weil J (1984) The role of belief systems in understanding genetic information: a study of mothers of children with genetic disorders. PhD thesis, The Wright Institute, Berkeley, CA Wexler NS (1979) Genetic "Russian roulette": the experience of being "at risk" for Huntington's disease. In: Kessler S (ed) Genetic counseling: psychological dimensions. Academic Press, New York, pp 199-220 Zuk GH (1962) The cultural dilemma and the spiritual crisis of the family with a handicapped child. Except Child 28:405-408

Fletcher J (1972) The brink: the parent-child bond in the genetic revolution. Theol Stud 33:475-485 Halloran KH, Hsai YE, Rosenberg LE (1976) Genetic counseling for congenital heart disease. J Pediatr 88:1054-1056 Kessler S, Kessler H, Ward P (1984) Psychological aspects of genetic counseling. III. Management of guilt and shame. Am J Med Genet 17:673-697 Kroeber TC (1964) The coping functions of the ego mechanisms. In: White RW (ed) The study of lives: essays on personality in honor of Henry A. Murray. Atherton, New York, pp 179-198 Leonard CO, Chase GA, Childs B (1972) Genetic counseling: a consumer's view. N Engl J Med 287:433-439 Lowery BJ, DuCette JP (1976) Disease-related learning and disease control in diabetics as a function of locus of control. Nurs Res 25:358-362 Mabry JH (1964) Lay concepts of etiology. J Chronic Dis 17:371-386 McCrae WM, Cull AM, Burton L, Dodge J (1973) Cystic fibrosis: parents' response to the genetic basis of the disease. Lancet 2:141-143 Mandelbaum A, Wheeler ME (1960) The meaning of a defective child to parents. Soc Casework 41:360-367