Perceptions of attention deficit hyperactivity disorder in one African American community Davison, Judy C: Ford, Donna Y:
The Journal of Negro Education 70:4 [Fall 2001] p. 264-273
The incidence of students being identified with Attention Deficit Hyperactivity Disorder (ADHD) is on the rise, yet few studies have examined the perceptions held by families of this special needs population. More specifically, what views do the parents and educators hold about the causes and treatment of ADHD? This ethnographic study took place in an urban school district. Forty-five hours of semi-structured interviews were conducted with 25 participants associated with four urban schools. The participants were African American parents and educators, and members of the medical community who work with African American parents and their children. Results of the interviews suggest that these participants have a socially constructed view of ADHD and are less likely to diagnose and use stimulant medication for the treatment of ADHD.
According to the U.S. Drug Enforcement Agency (DEA), Attention Deficit Hyperactivity Disorder (ADHD) has become the most common psychopathology of children in the United States with a reported 600% increase in the use of stimulant medications to treat this "disorder" since 1990 (DEA, 2000). This growing phenomenon has prompted numerous studies. However, there are few studies specific to African American children.
There have been studies examining the amount of knowledge and information about ADHD among African American parents (Bussing, Schoenberg, & Perwien, 1998) but few, if any specifically address the beliefs or perceptions of that population about ADHD. Furthermore, a review of the literature reveals that information about beliefs held by lower socioeconomic status (SES) African Americans is needed to enhance that body of knowledge (Ardila, 1995; Rostain, Power, & Afkins, 1993).
In 1973, Draguns noted that "whether an individual's behavior constitutes 'psychopa thology' was dependent upon the attitudes, expectations, and prevailing patterns of adaptation within the society in which the behavior occurs" (see also Marsella, 1979). Therefore, a particular form of behavior may be considered deviant in one society or culture but quite acceptable in another. Because identical behavior may be perceived-and responded to-differently in different cultures, it is important to make culturally influenced attitudes a focus of research on psychopathology. Culturally specific health beliefs determine whether one seeks medical care. However, very little research has been conducted that examines how ethnicity influences perceptions and practices concerning ADHD (Bussing, 1998).
Phinney (1996) concluded, "it is necessary to unpack the packaged variable of ethnicity" (p. 918). While race and SES are often strongly correlated, the terms are nevertheless not interchangeable. As noted earlier, the focus of this research is on ethnic, not class beliefs. For the purposes of this study, "ethnic" group refers to the African American population. Of course, within an ethnic group, whose members share a relatively precise ethnic label, there is a tremendous heterogeneity. That is, they differ in terms of social class, education, immigration history, geographical region, and family structure. Caution must be used as to not over generalize the entirety of the African American population.
Bussing, Schoenberg, Rogers, Zima, and Angus (1998) suggest that African Americans have less knowledge about ADHD because ADHD has not become part of the "collective consciousness" of their communities and, thus, serves to undermine the medical label (Bussing, Schoenberg, Rogers, et al., 1998). Understandably, if no one in the social network is talking about "medically recognized symptoms," a parent would be less likely to view a child's behavior as pathological. Subsequently, there would be no reason for a parent to actively seek information about a condition that few, if any, in his or her community believes is an actual medical condition.
It is possible that what the medical community defines as either abnormal or as ADHD behaviors are perceived by African American parents as either normal or behaviors) that the child will outgrow. Those parents would not see the child as needing professional intervention. Furthermore, some parents may also view the ADHD label as a mechanism to target African American children for discriminatory purposes. Therefore, it may not be a lack of knowledge of ADHD among those parents. Rather, these parents may question whether medical and educational professionals are trustworthy in making evaluations about their children.
Health behavior is believed to be strongly influenced by knowledge or beliefs held by individuals and their networks. To ascertain the knowledge or beliefs of parents of children considered as high risk for ADHD, Bussing, Schoenberg, and Perwien (1998) surveyed 486 African American and White parents of children at high risk for ADHD. The results revealed significant ethnic differences in knowledge and sources of information about ADHD. Fewer African American parents indicated that they had heard of ADHD (69% compared to 95%) or that they knew "some" versus "much" about it (39% compared to 70%). Furthermore, even though the physician was listed as the most preferred information source for both groups, only 17.5% African Americans reported they had received information about ADHD from a physician compared to 29% of the Whites interviewed. Based upon these findings, Bussing, Schoenberg, and Perwien surmised that minority children might be less likely to receive services for ADHD.
Interestingly, a study by Rostain et al. (1993) found that the degree of the mothers' knowledge regarding ADHD was negatively correlated to their willingness to accept stimulant medication as a treatment. This finding was in contrast to those of Weisz, Suwanlert, Chaiyasit, Weiss, and Jackson (1991) who found a moderate and significantly positive relationship between knowledge about ADHD and the social acceptability of methylphenidate (stimulant medication). They stated, "Well-informed parents have greater cautiousness when medication is being considered for their own children as compared with hypothetical case vignettes" (p. 179). Even though Weisz et al. may have had the assumption that one only gets knowledge through literature or contact with professionals, we must not discount the knowledge that one accrues from life experiences and careful observations. Therefore, even though the African American parents reported less use of and less preference for written information materials than White parents, that does not mean they have no knowledge. Their knowledge may simply be from a different source. Bussing, Schoenberg, Rogers, et al. (1998) offered that substantially more research should be undertaken to examine the relationship between ethnicity and ADHD knowledge.
In light of these findings, there is a need to understand the perceptions and attitudes of African American parents, which ultimately affects whether they choose to seek information or medical attention for ADHD. If parents do not believe ADHD to be a physical disability or health problem, then they are not likely to seek information and assistance.
METHOD
Qualitative inquiry is the avenue through which interactions between individuals can be best examined (Rorty, 1989; Smith, 1993; Sullivan, 1986). An examination of this topic through the use of interpretivist principles provides a rich understanding of the perceptions and interactions of the participants in the decision to label and treat children for ADHD in a midwestern African American community.
It was not the goal of the study to build a random sample, but rather to select forthright individuals who had much experience in working with African American parents and their children. In accordance with Maykut and Morehouse (1994), it is the first author's working knowledge of the contexts of the individuals and settings that lead her to select the participants for initial inclusion in the study.
Participants
The population of the area was 112,000. The participants were African American and White educators, medical personnel, and social workers/counselors who work with parents of children attending four inner city schools with a large African American population. Of the 25 participants in this study, 18 were elementary school personnel, and 7 were associated with the medical community. The elementary school personnel group included 10 teachers, 6 school administrators, and 3 school counselors/social workers. The participants associated with the medical community included 2 physicians, 2 private practice nurses, 5 school nurses, and 1 pharmacist. Looking at the participants by ethnicity; 5 of the 10 teachers were African American and the other 5 were White. All 6 school administrators were African American, 1 social worker was African American and 2 were White. Finally, 9 of the 10 medical personnel were White. Participants were experienced in their professions with all but 2 participants having at least 15 years of work experience. It is worth noting that 2 of the teachers and the pharmacist spoke from dual roles as professionals and as parents of a child diagnosed as ADHD.
Procedure
Even though the first author did not know the participants prior to this process, she did have "gatekeepers" who helped develop participant trust and openness more quickly than may have happened otherwise. Participants were located through referrals from individuals contacted that have worked with this population as well as leaders in the African American community. As the interviews progressed, additional names of participants surfaced. Important leads were identified in the early phases of data collection and pursued by asking new questions and/or interviewing additional individuals. As Glesne and Peskin (1992) suggested, this emergent research design sample composition evolved during the study. This approach in selecting participants offered flexibility and an opportunity to reach a broader group of interviewees (Glesne & Peskin, 1992; Taylor & Bogdan, 1984).
Semi-structured interviews were conducted by combining an exploratory and structured approach. The interviews were initially semi-structured but became more structured or focused in the follow-up interviews as themes in areas of importance to the participants became evident (Berg, 1995). The first author conducted each interview. Each formal interview lasted 1-1 1/2 hours. Even though the sample was relatively small, a total of 45 hours of interviews were conducted in addition to less formal phone conversations. The interview questions focused on the perceptions of individuals working with ADHD children within the school, home, and medical settings. The interviews were taped, transcribed, and then analyzed using a constant-comparative, emergent theme approach. At the end of each interview and observation, the senior author either taped or wrote extensive field notes reflecting the experience.
However, one does not react from just one's own standpoint. There is a "fusion of self to other-an interaction to each person's own meaning and interpretations and intentions" (Smith, 1993, p. 196). The field notes and reflective journal throughout this process encouraged self-inquiry as the author viewed her own intentions and meaning, her own reasons and responses as recommended by Smith (1992). As Krall (1988) indicated, one can learn much from self-reflection on one's own motivations and reasons for actions and understanding interactions with others. Lincoln (1989) reiterated this approach when she stated that we must examine "how we behave, both as inquirers and toward our respondents and co-participants in the inquiry process" (pp. 27-28). These field notes ultimately became part of the data and analysis.
Once the interviews and reflections were transcribed, emerging themes/categories were noted in the wide margins of the transcripts. A file by categories of participants assisted in visualizing any common views/perceptions among the groups. Ultimately, these categories or themes became sections in the findings of this work.
RESULTS
The findings in this inquiry are consistent with a socially constructed view of ADHD. Repeatedly, African American parents and those interacting with African American parents expressed a socially constructed view of ADHD and were less amenable to the diagnosis than White middle-class families in the same region who tend to embrace the biological determinist point of view (see Davison, 2001; McGuinness,1989). This is an example of Hacking's (2000) contention that "disability as a category can only be understood within a framework which suggests that it is culturally produced and socially structured" (pp. 38-39).
Five themes emerged from the participants and can be categorized into the following social structures: (a) distrust of the educational system; (b) perceived lack of cultural awareness of White educators; (c) perceived social stigma of the ADHD label; (d) concern about drug addiction; and (e) pressure from political forces. The following sections provide sample quotes from the participants that illustrate typical responses that offered evidence for the socially constructed view of ADHD and resistance to the diagnosis.
Distrust of the System
In this African American community, there are indications of deep-seated resentment about suggestions of racial differences in intelligence and a disproportionately high percentage of African American children being identified as mildly mentally retarded (MMR) for special education programs. The State Department of Education cited this district for overrepresentation of minorities in special education programs in the mid-1990s. MacMillan and Reschly (1998) hypothesized that the attitudes held by many toward categories such as MMR and SED are both stronger and more negative when overrepresentation is evident as such evidence might reinforce negative portrayals and stereotypes of minority groups.
A White counselor offered another explanation during her interview as to why African American parents distrust the system:
The rating scales we use to determine ADHD are ethnocentric. They are made to the White woman system, which is what elementary school teachers basically are. There is also a problem with a minority student going over to schools with a White majority ... they don't fit into the norm there and are seen as having ADHD because they don't fit into how those teachers would define the norm.
A third explanation for distrust may stem from the past school experiences of African American parents. If parents had difficulty in school, distrust toward the system remained. According to one African American social worker:
Most of those parents weren't comfortable being in school themselves. I have had parents essentially say, 'I just hated going to school. I felt really dumb. I was never very comfortable there.' They have a lot of negative connotations of school. It's really hard for them to get past that.
A fourth explanation deals with the issue of control-forcing African American children to conform to a standard established by an oppressive social and racial hierarchy. A White nurse who has worked with the African American community stated:
I think there's a negative perception in the African American community. It's viewed as a control aspect. Physical expressiveness is more accepted in the African American culture and exuberance is a desired characteristic and not something to squelch. Moms tell me that all the time-that it's [the ADHD diagnosis and stimulant treatment] taking the soul out [of African American children].
A social worker in an elementary school with an African American majority concurred saying, "African American parents feel that White teachers in schools are trying to control their children, trying to take their creativity ... spirit away from them."
Coupled with this issue of control is a sense of disconnectedness. African American parents may perceive White educators as being unable to relate to their culture and, therefore, unable to relate to their children in the classroom. In discussing her own experiences, a White first-grade teacher, who seemed to have a relatively good rapport with African American parents, explained:
I feel a lack of trust with the parents. I feel the parents trust me less as being a White educator here. Even though I think I receive more trust than many teachers, I am still White and they often don't think we can relate. A parent said, `It's you. She [the child/student] hasn't bonded with you.'
This perceived "lack of bonding" and "taking the child's spirit away" further deepens African American parents' distrust of the system. The issue is complicated further by African Americans' perceptions that Whites do not understand their culture. A teacher also commented on her views of the differences between White and African American teachers with regard to the use of stimulant medication:
White teachers are middle-class and support meds [medication] for African Americans and Whites. Even if they say it is an easy way out for parents, it seems they [White teachers] support meds [more than African American teachers] to help control classroom environment, too.
In addition to this distrust of the school system, African American parents perceived a lack of cultural awareness and appropriate teaching strategies among educators in working with African American children. Further explanation of their view is offered in the next section.
Lack of Cultural Awareness and Teaching Strategies
Behavioral and emotional expressions are powerfully tied to cultural experiences. Thus, interpreting the behaviors exhibited by students requires that professionals know the underlying experiences that influence the student's reactions to situations. An African American principal of an elementary school offered: