Journal of Child and Family Studies, Vol. 7, No. 3, 1998, pp. 333-352

Cuban Mothers' Schemas of ADHD: Development, Characteristics, and Help Seeking Behavior Emily Arcia, PhD.,1,3 and Maria C. Fernandez, Ph.D.2

Parents play a crucial role in the diagnosis and treatment of Attention-Deficit Hyperactivity Disorder (ADHD), one of the most prevalent developmental disorders of young children We report the findings of a qualitative study of Cuban-American mothers of 7 to 10 year old children with ADHD. Results suggest that mothers lacked a cultural model for ADHD and held a cultural model of normal child development which hampered their development of a schema of ADHD. Development of ADHD schemas were motivated by perplexity at their children's behavior and by the high value mothers ascribed to academic achievement. Although the schemas developed by the mothers were labeled as ADHD, their behavioral characterizations of their children, their attributions for the condition and for its causes, and their management strategies were not always in agreement with those of the biomedical model for the condition. However, once mothers classified their children's behavior as atypical, they actively sought assistance from the professional sector. KEY WORDS: Cuban-American mothers; ADHD; schemas; cultural models.

Parents play a key role in the diagnosis and treatment of AttentionDeficit Hyperactiviy Disorder (ADHD). As gatekeepers to services, parents must procure, or at least consent to the clinical assessment. Also, the reports they provide on their children's behavior are a major aspect of the 1Assistant

Research Professor, Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, NC. 2Research Assistant Professor, Mailman Center for Child Development, University of Miami, Miami, FL. 3Correspondence should be directed to Emily Arcia, Mailman Center for Child Development, University of Miami, P.O. Box 16820 (D820), Miami, FL 33101. Electronic mail may be sent to [email protected].

333 1062-1024/98/0900-0333$15.00/0 © 1998 Human Sciences Press, Inc.

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diagnostic process and can substantially affect diagnostic validity. In addition, parents are responsible for implementing treatment options, of which, even the least demanding requires substantial commitment. However, despite the important role played by parents, little is known of their schemas of ADHD and of the factors that shape these. Schemas are an individuals' cognitive codifications of experience that includes particular organized ways of perceiving cognitively and of responding to a complex situation. Schemas of the basic nature of things such as those of human nature, or of the maternal role, may be so intrinsic as to be highly resistant to change. Indeed, alternative views may not even be recognized (Quinn & Holland, 1987). These schemas may be viewed as "what one sees with, but seldom what one sees" (Hutchins, 1980, p. 12). On the other hand, there is evidence to suggest that in the development of schemas, people choose from the models they know, abandon one for another, combine them, or even use contradictory ones in order to explain a situation at hand (Kay, 1987). As such, the models that are available in people's culture may be critical to the development of schemas of ADHD. Cultural models are folk theories of reality. They "frame experience, supplying interpretations of that experience and inferences about it, and goals for action" (Quinn & Holland, 1987, p. 6). As is the case with scientific theory, folk theories explain events and are used to make projections, but unlike its scientific counterparts, cultural models are not consistent, comprehensive nor testable. They are tools (Kay, 1987) that can be used by individuals in the construction of their schemas. Because of the transparency of one's own cultural models, this use may be most readily observable in a cultural group that differs from the mainstream. Latinos are the largest growing ethnic minority in the United States. Whereas in 1990, Latinos constituted 9% of the Nation's population, estimates suggest that they will represent 21% by the year 2050 (U.S. Bureau of the Census, 1993). Far from being homogeneous, Latinos include socially, economically, and culturally diverse groups of which Cuban-Americans are the third largest, after Mexican-Americans and Puerto Ricans. Most of the research on Latino health behavior, parenting practices, and child development has focused on Mexican-Americans. Of the three largest Latino groups, Cuban-Americans have the highest family income and educational attainment (National Council of la Raza, 1993). As legal immigrants who migrated for political reasons, the CubanAmerican community has a sense of entitlement to residence that is reinforced by the large number present in South Florida; in primarily Cuban-American communities or in multi-cultural communities (Perez, 1990). In 1995, 55% of Dade County residents were Latino, and in 1990 approximately half of the Latino population was of Cuban extraction. Thus, of all

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ethnic minorities, Cuban-American help-seeking behavior is least likely to be affected by the sense of social marginality and discrimination that can beset other ethnic groups. This fact provides an opportunity to study the development of schemas of Attention-Deficit/Hyperactivity Disorder (ADHD) and the impact of cultural models on these without the confounding effects of social marginality. METHOD Participants Seven Cuban American mothers with children with ADHD participated in the study. Demographic characteristics are presented in Table 1. Mean maternal age was 41 years and mean educational attainment was 13.3 years. All the mothers were in the labor force in clerical or professional jobs. In addition, two mothers were enrolled in educational programs. Of the two mothers who were divorced and had not re-married, one lived with her parents and the other one shared childrearing responsibilities with her former husband. All were living in Dade County, Florida, primarily in Latino neighborhoods. All the mothers were bilingual and bicultural. They identified themselves as "Cuban-American" and all but one, who selected "American" ethnicity for her child, indicated that they wished their children would identify themselves similarly. Four reported speaking all or mostly Spanish at home. All the mothers were happy with the ethnicity of their social contacts which they described roughly as half Cuban and half Anglo-American. All the participants had one offspring between 7 and 10 years of age who had a prior diagnosis of ADHD. With one exception, whose symptoms were noted in the first grade, problems with behavior started in the preschool years and were brought to the mother's attention by teachers or caregivers. In all cases, the ADHD diagnoses were deemed by the investigators to be appropriate on the basis of Conners Teacher Rating Scale scores and on the basis of telephone interviews with the children's teachers. The target children included six boys and one girl. All but one child had siblings or step-siblings. Procedures Mothers were recruited through flyers posted in health centers and in private and public schools. Because a major aim of the study was to include mothers who were in the process of developing a schema of ADHD, an

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established diagnosis was not required for mothers to participate in this study. Instead, recruitment was aimed at mothers who were concerned about their children's activity level or ability to attend to task or sustain attention. An initial telephone screen ascertained the appropriateness of interested participants. All the mothers provided informed signed consent in person. Interviews were conducted in the mother's language and place of choice. Of the initial interviews, four were conducted primarily in English and three were conducted primarily in Spanish. Given that all mothers were bilingual, a considerable amount of switching between languages was evident in most of the interviews. All interviews were audiotaped. Audiotapes were transcribed verbatim and all transcriptions were checked for accuracy by a native speaker of the language. Analysis followed standard procedures for qualitative data. The transcripts were coded according to the topics and sub-topics under study and according to emergent themes. Case summaries for each mother were written and salient emergent themes were identified. These initial emergent themes were summarized in a letter that was mailed to all participants. Mothers were then contacted by telephone for one or two follow-up telephone interviews. Follow-up interviews were conducted approximately 13 months after the first interview in order to assess the validity of the emergent themes, expand on these as appropriate, and to collect an updated report on the children's status and on maternal experience. As before, interviews were transcribed, checked, and coded. Case summaries were updated, and final themes were developed and verified from the transcribed data. The findings reported below include only the themes that were consistent across all the interviews. Instruments The interview, which took approximately one hour to complete, was designed with two purposes in mind. First, for the purpose of validity, it was deemed essential that mothers tell their stories in their own way. However, it was also necessary to elicit information on the same set of topics and sub-topics across all mothers. Thus, the interviewers followed a protocol of 13 general questions (i.e., "Tell me how you first became aware of your child's problem") which included multiple subtopics (i.e., age, who first noted, others noted). But, the interviewers asked questions and prompted for details only as necessary. The topics included: symptoms, identification, diagnosis, behavior management, help-seeking (information, social-emotional, services), school behavior and performance, and relationship with school personnel.

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Immediately following the semi-structured interview, parents were administered the Cultural Integration Interview. This structured interview, adapted from the questionnaire designed by Szapocnik, Kurtines, and Fernandez (1980), assesses cultural orientation, ethnic identity, and social marginality. Demographic information was collected last. The children's teachers were asked to complete a Conners Teacher Rating Scale (Conners, 1989) and a telephone interview. Six of the seven teachers complied with both requests. RESULTS Findings are described and illustrated in three parts. Part 1 presents maternal development of ADHD schemas, the driving force behind their development, and the impact of cultural models. Part 2 is a summary of the characteristics of maternal schemas of ADHD. It includes child-centered and causal attributions made by mothers as well as maternal behavioral response to the condition, their discipline strategies, and their use of medication. In part 3, an account of help-seeking behavior is presented and linked to the characteristics of maternal schemas. The Development of Schemas of ADHD Maternal schemas of ADHD arose from mothers' need to understand their children's behavior and academic underachievement. In the process of developing appropriate schemas, mothers unsuccessfully attempted to apply cultural models that would explain their children's deviance. Attempts to rely on cultural models were unsuccessful because none appeared to explain the ADHD behaviors. Also, the cultural model of normal child behavior that mothers seemed to employ was primarily composed of two basic elements which did not enable an explanation of the condition. The development of maternal schemas is described and illustrated below. Each quote opens with a letter number pair that identifies the participant and closes with an indicator of whether the quote appeared in the initial (1) or follow-up (2) interview.

Perplexity Perplexity was one of the most salient themes that emerged from the interviews with mothers. Expressions of bewilderment and expressions of stress in relation to the difficulty mothers had in understanding their chil-

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dren's behaviors were numerous in the interviews. To mothers, their children's behavior appeared highly contradictory. They couldn't explain the behavior in light of their assumptions about how and why children generally behave as they do. Mothers experienced loving, affectionate children who were noncompliant, and/or intelligent children who had extraordinary difficulty learning to read. (m6)...before he was assessed and diagnosed, I'd say {think}, it can't be that he is delayed, because he is so intelligent for some things. However, at school they would tell me that he couldn't learn to read; that was the first time that 1 had a shock of that kind, when they told me. "No, we can't manage to teach this child to read, this child can't learn to read." I'd say, my God, how is it possible? He is not retarded. What could he possibly have? What could it possibly he? (2)

In Search of an Explanation By the time that mothers first heard of ADHD, mothers had attempted to apply two familiar Cuban labels for children with atypical behavior: "retardado" (retarded), and "malcriado" (spoiled, poorly raised) or "nono" (pampered). They had also considered labels from the mainstream Anglo culture such as "learning disabled" and "dyslexic." None was appropriate. In addition, attempts to explain their children's behaviors in terms of: attention seeking, immaturity, a hearing deficit, "vaguitis" (laziness), and an extreme in the range of normal behavior, were also inadequate because they failed to explain the whole constellation of child behaviors. Mothers' initial lack of an explanatory model for ADHD suggests that none exists in the Cuban culture. None of the mothers had attempted nor had heard of a folk remedy for the condition. This finding is significant because, effectiveness aside, cultures have remedies for the conditions that they recognize. Neither did mothers mention friends or family as sources of information. Actually, both in the initial and in the feedback interviews, mothers themselves alluded to the lack of an appropriate cultural model. Instead of relying on cultural models, mothers drew upon their own experience with their children, their interactions with teachers, occasionally from printed material, and later from the clinicians who provided assessment and/or treatment. Generally, the development of ADHD schemas was a slow and stressful process. (m6) ... Or maybe it is something inherited through my family or through, I don't know. I honestly don't know because people didn't use to think about those things. Children used to be "good" or "spoiled." That was the only classification available. No, learning disabilities and traumatized children didn't exist. They used to be spoiled or great children. That was the only division. So, no, I don't know. I still don't know where, I don't know if that is the only cause or if it is something, I don't know. (1)

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In addition to lacking a cultural model appropriate to ADHD, the cultural model of normal child development and behavior that could be deduced from mothers' reports appeared to hamper the development of appropriate schema. Normal child behavior was classified along two dimensions that appeared to the mothers to be necessary and sufficient for good behavior: intelligence and affection. These two dimensions do not provide room for impulsivity, hyperactivity, and attentional processes. In analysis, the cultural model of normal child behavior and development emerged as a strong, highly salient theme. It was validated by a search for the descriptors that mothers used for their children. Indeed, in response to the interviewer's request to provide a description of problematic child behaviors, mothers provided numerous narratives of child behaviors that are symptomatic of ADHD. All of the children exhibited symptoms of inattention and of hyperactivity. However, all mothers also provided spontaneous, unrequested characterizations that were very favorable and which fell into the two dimensions mentioned above: intellect and affect. Descriptors used in conjunction with the verb "to be" (s/he is ...), indicated that six of the seven children were perceived as personable. Descriptors included: sweet, "duke" giving, kind, affectionate, loving, "amoroso," "carinoso," "bueno," nice, wonderful, "bien educado," "sano," social, popular, and well-behaved. Five of the seven children were described as being intelligent (bright, intelligent, "inteligente," and smart). Adverbs that indicated an affectionate and noble person were used 17 times. Adverbs that indicated intelligence were used 13 times. Less favorable descriptors, and those that in the context were not clearly classifiable included: immature, babyish, active, persistent, "independiente," "hiperactivo," "intranquilo," fidgety, nervous, a clinger and "no es igual" (he is not the same as other children). These unfavorable or neutral descriptors were a minority, representing approximately a third of all descriptors. None of the children was described solely in negative or neutral terms. The characteristics provided by mothers fell into two categories that can loosely be labeled "head" and "heart." Indeed "buen corazon" (good heart) is a common Cuban expression that is used to indicate a good, generous, affectionate person. Thus, the fact that mothers could not explain how a child who is loving and bright could nonetheless be disruptive or be academically delayed, implies that these two elements were seen as necessary and sufficient for good behavior. In other words, what else is there, beyond bright and loving to explain good behavior? Given this cultural assumption of the factors that determine behavior, mothers may have had to modify their prior schemas considerably in order to explain ADHD.

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Academic Performance In all cases, children's performance at school was the primary impetus for mothers' concern and for eventual help-seeking behavior. It was the dnving force for the development of schemas of ADHD. Although both academic underachievement and disruptive behavior at home and at school were of concern to mothers, underachievement was a more salient concern. Grades and achievement scores were mentioned repeatedly and were used as key indicators of performance. The basic assumption behind the high value placed on grades is that these are true and reliable indicators of academic productivity, behavior, and achievement. They were interpreted as measures of success that extended beyond a straightforward indicator of academic performance. Poor grades indicated a need for medication and good grades proved the effectiveness of pharmacotherapy. For some mothers, poor grades were the turning point in their perception of their child's behavior as anomalous. By the same token, one mother (ml) who between the first and second interview rejected the appropriateness of the ADHD diagnosis for her son, ignored very frequent school complaints for two years prior to the first interview because "what came home to me was A's and B's." Subsequent to the initial interview, her son was placed in an alternative classroom, a dropout prevention program. His grades improved, that year's teacher had called the mother only once or twice prior to the second interview, and possibly related to these facts, the mother rejected the ADHD diagnosis. The importance of achievement was highlighted by the fact that mothers undertook various measures to maximize it. Most mothers supervised homework. As reported by the mother, one child moved in with his father because the father had more time than the mother to supervise homework and other after-school activities. Others (n = 4) employed or intended to employ tutors and/or undertook or planned school transfers (n = 3). Also, special rewards were made contingent on acceptable grades even by mothers who did not have training in behavior management. Finally, mothers provided books or phonics programs to promote reading achievement. The quote that follows, by its length, content, and detail, exemplifies the concern with which one mother followed her child's achievement, and some of the measures she took to assist it. (m3) When she started in kindergarten, when I saw that it was December and I could not see any progress that I would consider {appropriate} for her, I went and spoke with the Principal and she told me that it was not very important because there are kids who sometimes {are} like a late bloomer, that sometimes in December or January all of a sudden, as if they opened a door, and they knew it all, and well, I left, it didn't convince me, but I said, OK. And they promoted her from kindergarten to pre-primary, which is the grades that they use in that school

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But when she started in pre-primary, the same thing {happened}. And I saw that in October, November, I don't think that it was as far as November. I didn't think that she was making any progress, not as much as I thought her capable. I spoke with the teacher and the answer was, "Well, you know.., " "I want to get her a school tutor also, two days a week." More or less by March, I saw that she had not made enough gains and I decided to stop the tutor to see if she...because she couldn't have a tutor forever, to see up to what point... to see how she would do. I thought she had improved, and she had improved, but in that span between March and almost the end of classes, in May, I saw that she lost some ground, but well, a month before classes were over they told me that she couldn't be promoted I said, "well, if all year long, you didn't alert me..." I enrolled her in a different school and when she started in this other school, within months I saw that she was still not reading like a first grader. In January of that second year in first grade, they called me and they told me that she was having difficulty, she had difficulty reading and I was in complete agreement. (1) Characteristics of the Schemas The schemas that mothers developed over time included a label of ADHD, a set of behaviors that characterized the children, and in some cases a set of management strategies specific to the condition. Although the label agreed with that of the biomedical model that is currently in use, the behavioral characterizations of the children, mothers' attributions, and their management strategies were not always in agreement with that model. Child-Centered Attributions In the initial interviews, all mothers ascribed their children's behaviors to ADHD. In the follow-up interviews, with the exception of the one mother who had rejected the diagnosis, the mothers' child-centered attributions suggested stability, globality, unintentionality, and lack of conscious control. One participant suggested that peer pressure and limitations on the time that she had available for supervision also contributed to her son's behavior. The quote that follows illustrates maternal child-centered attributions and the perplexity previously described. (m6) But the moment comes when you have to say, "Stop. " And he can't stop. He can't. I used to think that he didn't want to. That is, could he be deaf? Could he have a problem that he doesn't... ? But, the point is that he can't stop. He starts and it is tralalalala. Without being able to, he cannot control himself. That is what I now see. (1) The one mother (ml) who had changed her mind about the appropriateness of the ADHD diagnosis for her son considered that his troublesome behavior had been transient, "una etapa" (a phase). Although she sounded fairly unhappy and somewhat angry when she reported difficulty in having him complete tasks, she said that she did not have trouble with his behavior

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at home. As opposed to the other mothers, she frequently attributed intentionality to his unfinished tasks ("no queria hacer el trabajo," "didn't want to do his work"). Causal Attributions Most mothers' causal attributions could be loosely classified as organic, congenital, and genetic ("algo hereditario"). But, although these biomedical labels were either used by the mothers or appear fitting from maternal report, a strict biomedical interpretation of the mothers' understanding would not be appropriate. For example, organicity ranged from neurological to characterological (m3) ("Ella nacio asi.. con un caracter muy fuerte.. eso nace con el muchacho.." "She was born that way...with a very strong temperament... that is inborn"). Psychological/psychodynamic causes were mentioned only twice; once by a mother (m2) who in addition to a "neurologic deficit" also suggested "a psychological component to it being that he comes from a broken home." And, by another mother (m5) who reported having had attributed his behavior to the result of watching too much television. During the interview she suggested and discarded a psychodynamic cause because "..es un nino muy querido.. es adorado por sus hermanos..." (he receives a lot of love... his siblings love him dearly). The mother (m7) whose schema most closely resembled the biomedical model had considered food allergies as a causal agent. Her consideration is an example of maternal use of cultural models as tools in the development of schema. The concept of food allergies as a possible cause of ADHD is present in the mainstream Anglo culture. Indeed, this mother had one of the two most Anglo cultural orientation scores. The need for schemas to be somewhat internally consistent was evidenced by the case of the one mother who rejected the ADHD diagnosis (ml). In addition to having changed her child-centered attributions, by the second interview she changed her initial causal attribution of "something medically wrong" to immaturity, "malacrianza," (spoiled), and "vaguitis" (laziness).

Management Strategy: Discipline Two mothers (m2, M7) consistently used behaviorally based discipline strategies (token economy, privileges contingent on behavior, time-out). Both mothers emphatically attributed these practices to the psychologists they consulted when their children were diagnosed with ADHD. Interestingly, the causal and child-centered attributions of these mothers most

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closely resembled those of the biomedical model. They both used or had used pharmacotherapy, and both used psychological/counseling services on more than one occasion. The mothers also had the most Anglo cultural orientation scores of the group. Thus, it is not clear whether these two mothers happened to encounter prescriptive therapists who were particularly effective in shaping mothers' schemas, or whether the mother's cultural orientation facilitated the incorporation of the therapists' treatment options. Without direction from a clinician, only one other mother (m5) devised a specific strategy with which she was satisfied. When her son misbehaved, she punished him by giving him a handwriting task which he had to complete before he could watch television. This somewhat behavioral strategy stands in sharp contrast to those used by the other mothers who expressed a considerable amount of stress at their limited ability to manage their children's behaviors. The remaining three mothers said that they tried to avoid physical punishment by providing "incentives" (incentives), scolding, sweet talking, withholding privileges, shouting, and by counting to warn that inappropriate behavior would be consequated. Sometimes they also spanked or threatened to do so. As far as could be ascertained from the interviews, these mothers had not developed any specific strategies for managing the behaviors associated with ADHD. (m4) I understand the behavior but sometimes it comes to a moment that I myself feel that I cannot put up with it, you know, like it's too much. And I feel like. "What am I supposed to do?" because it comes to the point where you don't know what else to do. (2)

It also appears that, except for the two mothers who received behavioral training, mothers refrained from reinforcing desirable behavior. For example, one mother whose child had improved academically was very careful not to talk about the improvement in front of her daughter and seemed hesitant and nervous about reporting it because talking about it could reverse the trend. This common cultural response to desirably unexpected behaviors is diametrically opposed to behavioristic principles are based on reinforcing, praising desirable behavior. Management Strategy: Medication Overall, mothers were fairly well disposed towards medication. Four of the seven children were on methylphenidate. Another child chose to discontinue medication after complaining of headaches (m2). Still another child's mother (m4) planned to pursue a medication trial when she could

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afford it. Only the mother (ml) who rejected the diagnosis of ADHD reported that medication was not an option for her. Mothers' favorable attitude toward medication is exemplified by one mother (m2) who reported that she initially sought assessment for her son to "see if there was a medication that would help him concentrate, focus more on school." Another mother (m6) pursued medication treatment with a private physician, and paid for it out of pocket because two pediatricians from her health maintenance organization emphatically refused to give her child a medication trial. Mothers' generally favorable attitude towards medication is particularly striking when one considers that with the exception of one child who took medication seven days a week, all other children were on medication only on weekdays during school hours. Thus, maternal perception of the positive effect of medication was maintained primarily through teacher report. It was not developed through direct observation of their children's behavior because they did not see their children while under the effect of medication. (m7) So, he started on the Ritalin when he started kindergarten and he has been on the Ritalin ever since. He is now in third grade...And let me tell you what, X Is on the honor roll at school. (1)

Misconceptions about medication were common. Among these were the ideas that psychostimulants were specifically for children with aggressive behavior (ml), that they had significant, long term side effects (ml), and that they would provide a cure (m4). One mother (m5) expected the results of psychoeducational assessment to provide an indication of the appropriate dosage. Thus, even though her son had responded well to a medication trial, she had waited to start treatment until the assessment report was completed. Meanwhile, her son took end of the year achievement tests without medication and did very poorly on them. Although generally positive, mothers' use of medication varied according to the purposes and effects that they attributed to it. Help Seeking Behavior Active help-seeking occurred only after mothers had developed schemas of ADHD that suggested a disorder; behavior outside the normal range. At this point, mothers pursued expert advice. There was almost no evidence of reliance on informal sources of support. As a matter of fact, although there was some variance among the mothers, spouses for the most part played a secondary role. It was possibly the nature of their schemas,

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one which characterized the behavior as a biomedical condition, that directed mothers towards seeking assistance from the professional sector. Use of Expert Advice Regardless of the degree to which mothers' schemas of ADHD were similar to the biomedical model, the decision to seek services definitely hinged on the conviction that their children's behavior was outside the normal range. Once mothers decided that their children's behavior was developmentally inappropriate, they sought expert counsel. Tutors were hired and children were taken to pediatricians and referred to psychologists or neurologists for assessment. The value that mothers place on expert advice was evidenced by the fact that in several cases, parents paid out of pocket for services that were not covered by health insurance. (m3) I spoke with the pediatrician who said yes, of course, and we started to evaluate her and he identified attention deficit disorder with hyperactivity. Then, I started her on therapy. If a child has something wrong with him, you have to look into it. I am glad that I took her {to therapy}. I am sorry I didn't do it earlier because I like to catch things early. (1)

Reliance on expertise was a strong theme in maternal report. Expertise was inexorably linked to professions in such a way that mothers expressly excluded themselves. Comments such as the following were common: uyo no soy psicologa, yo soy madre..." (I am not a psychologist, I am a mother) and were used to qualify opinions or express limitations. Also, because expertise was not presumed to be easily transferrable, mothers commented on their lack of expertise, but did not necessarily seek to enhance it. Theirs is not a do-it-yourself culture. (ml) Well, I tell you, everyone wants, well, a normal person, eh one who is invested in her child, nowadays one sees many cases of people who are not. But, everyone who has a stake in her child wants someone to help her, to orient her, someone who is better prepared than one—because the garbage collector knows about trash, the physician knows about medicine, but the physician definitely does not know about trash; how it is thrown away, how certain biohazards well, various substances are discarded. Each person knows his own specialty. (2)

From the mothers' perspectives, experts know what to do and are expected to have a plan of action and to carry through with that plan of action. Professionals should communicate issues and needs to mothers, and, as necessary, instruct mothers in how to support their endeavors. However, the responsibility for implementing an intervention lies mostly with the professional. Mothers seemed to see themselves primarily as managers or administrators whose job is to ensure that the correct technician is recruited and the appropriate resources are allocated. In this respect, mothers could

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be very persistent. One mother reported the following after a medication trial with a private physician. (m6) At this point I am paying for a private pediatrician because the clinic's {HMO} pediatrician, even after 1 saw the very favorable effect that Ritalin had on the child, the clinic's pediatrician didn't wish to help me with it. No. And he told me categorically, no, that he didn't believe in that, that those things—I took him to two different {physicians} in the same clinic because that {clinic} is all I have. They didn't believe in that, because that business of giving kids drugs, and stuffing them, that, in the long run would result in God knows what impact it would have on the child some years hence. It was something so..{did not finish sentence} (2)

Mothers sought professionals for their children's assessment and preferred to seek direct services for their children rather than to seek services for themselves or for their families. Neither parent services (training, socioemotional support) nor parent-child training were options pursued by families. This finding is noteworthy in light of the fact that most mothers expressed a high level of stress. The two mothers who received some training on behavior management had initially sought child-focused services. Maternal focus on child-centered services is such that even though the feedback letter to participants included a blanket suggestion that parents might benefit from learning to use behavioral management techniques, only one mother asked where training might be available. It is evident that mothers see their children's behavioral problems as residing in the child and thus possibly do not recognize that they might play an instrumental role in its treatment. Teachers' Expertise Maternal reliance on expertise extended to teachers in significant ways. Mothers were very happy with and sought support and guidance from teachers who had a plan, who had strategies, who were strict, or who gave them clear suggestions about what they might try at home. They were irritated with teachers who reported the child's misbehavior or underachievement but did not indicate a plan of action. These expectations of teachers may not be limited to ADHD, but may be amplified by its occurrence. Teachers and tutors who were pro-active and/or successful with their children were mentioned and talked about even one or two years after the fact. For example, one mother (ml) spoke very highly of a teacher who called her almost every day at the beginning of the school year to inform her of homework or to inform her that her son had to stay after school to complete unfinished work. This mother's favorable reception was striking in light of the fact that she had made it a point of complaining to the

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principal about a previous teacher who called her continuously. The difference between the two situations was that the teacher the mother favored had a plan of action. Interestingly, teachers who were not helpful, or those with whom the children did not progress academically, were not held accountable. Mothers did not hold teachers responsible for their children's lack of appropriate behavior in the classroom, for their children's academic underachievement, nor for teacher's relative unfamiliarity with ADHD. Indeed, mothers tended to excuse teachers and blame the school system. In one case, a mother highly praised a tutor who taught her daughter to read in approximately 16 hours of contact time, but she never blamed the previous year's teacher for the child's failure to learn. Another child's failure to progress during an academic year was attributed to a bad year and not to a bad teacher even though the mother attributed the subsequent year's gains to the teacher's efforts. Teachers were excused on the basis of large class size, the need to attend to all their students, or inadequate training on ADHD. Teachers who failed to alert parents about the possibility that a child might have a developmental problem were excused because "they don't know the parent's {likely} reaction" or because "...pueden tener un problema legal." (they may face a legal problem). The fact that all school personnel who were named or alluded to in the interviews were referred to in a favorable manner, whereas all negative events were attributed to an undefined "they" or to "the school," suggests that mothers had difficulty attributing wrongdoing to a person that they know; and one to whom they would entrust with their child. This evidence of personalism and deference to authority supports current understanding of this notable feature of Latino culture. Overall, help seeking behavior could be explained well in light of maternal schemas of ADHD. Mothers saw ADHD as an organic condition in their children. Consequently, they sought professional services for their children, not for themselves. DISCUSSION We examined the development of ADHD schema in Cuban American mothers and explored the effects of culture on its development. Although the findings were salient within and across mothers, readers are cautioned that participants comprised a self-selected sample of middle class mothers, most of whom had resided in the United States for over 30 years. Only further study can address the generalizability of findings to the population

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of Cuban-American mothers of various socioeconomic and acculturation levels and to extend them to the general population. Our findings suggest that in developing schemas of ADHD, mothers seek input from multiple sources. A primary source is their cultural knowledge. As evidenced by attempts to apply labels of "retardado" or to explain causality in terms of food allergies, mothers turn to explicit models from the culture or cultures with which they are familiar. If an ADHD model had been more readily available for these mothers, perhaps the development of their schemas would have been facilitated substantially. Indeed, the one mother (m7) who consulted a highly directive therapist was the mother with the most specific strategies for managing her son and was the mother who was most satisfied with her child's status. When available models fail to explain their experience, mothers turn to other sources, but the role of culture in shaping their newly developing schema is still significant. Mothers operate under the influence of their existing schemas and these undoubtedly have been formed and shaped by their cultural models. In the case of these middle class Cuban-American mothers, at least two such implicit models were apparent: a two-factor model of child behavior, and a model of reliance on expertise. The extent to which mothers' schemas reproduce the biomedical model will require further, longitudinal research. At least in the case of ADHD, the nature of the condition is such that a high degree of individual variation in schemas might not be likely. For example, only one of the mothers had developed her own specific strategy for behavior management. Overall, however, the course followed by mothers was a middle ground between the psychological perspective which suggests that individuals follow a quasiscientific process of observing, information seeking, and revising in order to develop schemas, and the cultural anthropological perspective which suggests that beliefs and attitudes are adopted in almost pre-packaged form from the culture. Both the content and tone of maternal interviews indicated that mothers had difficulty creating schemas of ADHD. This difficulty may not be sample-specific. In a study of children with ADHD from the general population, Sullivan Kelso, and Stewart (1990), found an average of 24 months lag between the time that parents first noted the initial symptoms of ADHD and the moment when they were sure that a problem existed. ADHD is a difficult condition to explain; most likely because behavior is universally interpreted to be intentional and willful (D'Andrade, 1987; Dix, Ruble, Grusec, & Nixon, 1986) and because ADHD behaviors are not dramatically different from normal. Moreover, the difficulty in arriving at an explanatory model of ADHD is even evident in the biomedical culture, which over the years, has had multiple re-conceptualizations of the disorder.

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Other features of the participants' experience have also been documented in studies of families of children with ADHD from the general population. Among these are substantial parenting stress (Anastopoulos, Guevremont, Shelton, & DuPaul, 1992; Barkley, Anastopoulos, Guevremont and Fletcher, 1992; Sanger, MacLean, & Van Slyke, 1992) and parental preference for child-centered treatment (Wilson & Jennings, 1996). Consistent with the findings from this study, research from the general population suggests that mothers' receptivity to behavioral intervention is negatively associated with causal attributions of organicity (Reimers, Wacker, Derby, & Cooper, 1995). Although the obvious priority which the participants gave to their children's academic achievement may be the result of the self-selected nature of the group and its middle class standing, there is at least one prior study which suggests that educating their children is one of the primary objectives of Cuban-American mothers (Field & Widmayer, 1982). This priority may be a culturally distinctive feature of Cuban-Americans which could be accentuated by membership in the middle class. Cultural distinctiveness need not disappear with acculturation (Gutierrez & Sameroff, 1990; Lin & Fu, 1990). Our findings have important implications for clinical practice. For one, parent use of the biomedical label and reference to its features does not imply adherence to the whole model. It is the clinician's responsibility to understand their client's schema of his or her child's behavior and modify or expand it as necessary. For instance, a behaviorally based intervention might not be successful with a mother who hesitates to speak of her child's positive behaviors for fear of sabotaging them. Also highly relevant to clinical practice is maternal focus on child-centered therapy. Given that parent training is one of the preferred modes of treatment for ADHD (Anastopoulos, DuPaul & Barkley, 1991), this training may have the highest level of acceptability if it is presented to parents not as parent training, but as paraprofessional training. Thus, rather than implying that the parent's skills are deficient, this alternate presentation suggests that the child requires a specialized, full time intervention for which the parent is trained in lieu of a therapist. Teachers played prominent roles in the mothers' development of ADHD schemas. For instance, the one mother (ml) who, by the second interview, had rejected the ADHD diagnosis may have done so partly because she stopped getting complaints from her son's teacher. This finding implies a substantial responsibility for clear and valid communication from teachers and suggests that, like clinicians, teachers may be most effective if they understand maternal schemas.

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One of the goals of our study was to explore the effects of cultural models on the development of schemas of ADHD. In this sample, cultural models contributed little to the explanatory aspects of mothers' schemas because there did not appear to be a Cuban cultural model that explains the behaviors that the biomedical culture has labeled as ADHD. However, mothers' strategies for managing behaviors and their attitudes towards help-seeking had substantial cultural grounding. Further study should address the interplay of culture and the development of schemas for conditions such as mental retardation for which there are existing cultural models. ACKNOWLEDGMENTS

This research has been made possible by a Minority Supplement Award for Dr. Arcia from the National Institute of Mental Health (U01 MH 50447) and by support from the Leon Lowenstein Center for the Study, Prevention, and Treatment of Disruptive Behavior Disorders. The authors are greatly indebted to the mothers who so willingly and openly shared their stories with them and to Krista Huley who transcribed, coded, and provided valuable insights. Drs. Rebecca Frank, Jeff Epstein, and Debra Skinner were patient and very helpful reviewers of prior drafts. REFERENCES Anastopoulos, A. D., DuPaul, G. J., & Barkley, R. A. (1991). Stimulant medication and parent training therapies for deficit-hyperactiviry disorder. Journal of Learning Disabilities, 24, 210-8. Anastopoulos, A. D., Guevremont, D. C., Shelton, T. L., & DuPaul, G. J. (1992). Parenting stress among families of children with attention deficit hyperactivity disorder. Journal of Abnormal Child Psychology, 20, 503-20. Barkley, R. A., Anastopoulos, A. D., Guevremont, D. C., & Fletcher, K. E. (1992). Adolescents with attention deficit hyperactivity disorder: mother-adolescent interactions, family beliefs and conflicts, and maternal psychopathology. Journal of Abnormal Child Psychology, 20, 263-88. Conners, C. K. (1989). Comers' Rating Scales. Toronto: Multi-Health Systems. D'Andrade, R. (1987). A folk model of the mind. In D. Holland & N. Quinn (Eds.), Cultural models in language and thought (pp. 112-148). Cambridge: Cambridge University Press. Dix, T., Ruble, D. N., Grusec, J. E., & Nixon, S. (1986). Social cognition in parents: Inferential and affective children of three age levels. Child Development, 57, 879-94. Field, T. M., & Widmayer, S. (1982). Mother-infant interactions among lower SES Black American, Cuban, Puerto Rican and South American immigrants living in the same neighborhood. In T. M. Field, A. Sostek, P. Vietze, & A. H. Leiderman (Eds.), Culture and early interactions (pp. 41-60). Hillsdale, NJ: Erlbaum. Gutierrez, J., & Sameroff, A. (1990). Determinants of complexity in Mexican-American and Anglo-American mothers' conceptions of child development. Special Issue: Minority children. Child Development, 61, 384-394.

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Hutchins, E. (1980). Culture and inference: A Trobriand case Study. Cambridge, Mass.: Harvard University Press. Kay, P. (1987). Linguistic competence and folk theories of language: Two English hedges. In D. Holland & N. Quinn (Eds.), Cultural models in language and thought (pp. 67-77). Cambridge: University Press. Lin, C.C., & Fu, V. R. (1990). A comparison of child-rearing practices among Chinese, immigrant Chinese, and Caucasian-American parents. Special Issue: Minority children. Child Development, 61, 429-433. National Council of La Raza (1993). State of Hispanic America 1993: Toward a Latino anti-poverty agenda. Washington DC: Author. Perez, L. (1990). Cuban Miami at the Crossroads. Cuban Studies, 20, 3-9. Quinn, N., & Holland, D. (1987). Culture and cognition. In D. Holland & N. Quinn (Eds.), Cultural models in language and thought (pp. 2-40). Cambridge: Cambridge University Press. Reimers, T. M., Wacker, D. P., Derby, K. M., & Cooper, L J. (1995). Relation between parental attributions and the acceptability of behavioral treatments for their child's behavior problems. Behavioral Disorders, 20, 171-178. Sanger, M. S., MacLean, W. E., Jr., & Van Slyke, D. A. (1992). Relation between maternal characteristics and child behavior ratings. Implications for interpreting behavior checklists. Clinical Pediatrics (Phila), 31, 461-466. Sullivan, A., Kelso, J., & Stewart, M. (19903. Mothers' views on the ages of onset for four childhood disorders. Child Psychiatry and Human Development, 20, 269-278. Szapocznik, J., Kurtines, W. M., & Fernandez, T. (1980). Bicultural involvement and adjustment in Hispanic-American youths. International Journal of Intercultural Relations, 4, 353-365. United States Census of the Bureau. (1993). Hispanic Americans Today (Current Population Reports P23-183). Washington, DC: U.S. Government Printing Office. Wilson, L. J., & Jennings, J. N. (1996). Parents' acceptability of alternative treatments for Attention-Deficit Hyperactivity Disorder. Journal of Attention Disorders, 1, 114-121.