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Psychiatric Services, VOL. 58, No. 5

Article | May 01, 2007

Coming to Terms With ADHD: How Urban African-American Families Come to Seek Care for Their Children

Susan dosReis; Matthew P. Mychailyszyn; MaryAnne Myers; Anne W. Riley

Psychiatric Services 2007; doi: 10.1176/appi.ps.58.5.636

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Abstract

Objective: This study investigated how parents' interpretations of their child's disruptive or inattentive behaviors led them to seek medical care that resulted in a diagnosis of attention-deficit hyperactivity disorder (ADHD). Methods: Qualitative, semistructured telephone interviews were conducted with parents of children who had been newly diagnosed as having ADHD (96% of the children were African American). The 26 participants were recruited from primary care, developmental and behavioral, and specialty mental health pediatric clinics affiliated with a large, urban teaching hospital. The analysis followed a grounded theory approach. Results: By the time that parents sought treatment for their child's ADHD, they had been through an extensive process to pinpoint their child's problems. Parents' conceptualizations emerged as they described their child's behavior, explained the situation, described how ADHD affected their children, and explained how they sought answers. Their reactions to the behavior and visions they had for their child's future reflected their motivation to manage the situation. Parents' conceptualization and management of the behaviors described the process of coming to terms with their child's ADHD and the need for care. Four distinct patterns describing this process emerged from the analysis: immediate resolution, pragmatic management, attributional ambivalence, and coerced conformance. Conclusions: It is likely that clinicians' awareness of the different approaches by which families come to the decision to seek care for their child's ADHD will allow clinicians to provide more responsive care and better tailor interventions to improve therapeutic outcomes for children receiving mental health treatments. (Psychiatric Services 58:636—641, 2007)

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Dr. dosReis and Mr. Mychailyszyn are affiliated with the Department of Psychiatry, Division of Child and Adolescent Psychiatry, Johns Hopkins School of Medicine, CMSC 346, 600 N. Wolfe St., Baltimore, MD 21287 (e-mail: sdosrei1@jhmi.edu). Dr. dosReis is also with the Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, with which Dr. Riley is also affiliated. Dr. Myers is with Westat Corporation, Rockville, Maryland. This article is based on a paper that was presented at the 18th National Institute for Mental Health Conference on Mental Health Services Research, Bethesda, Maryland, July 18—19, 2005.

In 2003, nearly 57% (2.5 of 4.4 million) of children ages four to 17 years in the United States who had diagnoses of attention-deficit hyperactivity disorder (ADHD) were receiving stimulant medication (1). However, African-American children and children of other minority groups in low-income, urban communities traditionally have lower rates of ADHD treatment compared with children of nonminority groups (2,3,4). Family burden (5), perceived need (6), and the child's perceived health status (7) predict medical service use, but social and cultural norms as well as attitudes and beliefs about the illness also influence decisions to seek care (8,9,10,11). Socially and culturally based perceptions may affect African-American families' greater reservations about medication treatment, earlier and more frequent discontinuation of mental health treatment for their children, lower levels of knowledge about ADHD, and greater reservations about psychotropic treatment (12,13,14) in comparison with white families (15).

Several community-based studies of treatments for ADHD illustrate racial disparities in access to and maintenance of care (12,13,16,17,18,19,20), but none explored the complex processes and motivations involved in managing the daily challenges of children with emotional and behavioral problems among minority families in urban, low-income neighborhoods. This knowledge could provide insight into how to engage minority parents and their children sooner and to maintain ongoing participation in treatment. This qualitative study was undertaken to better understand the perspectives of families seeking care in inner-city community clinics, where most families are African American. The goals were to explore how parents made sense of their child's disruptive or inattentive behaviors and what led them to seek care that resulted in a diagnosis of ADHD.

Methods

Study design

Qualitative telephone interviews were conducted with 26 parents whose children were diagnosed in the past month as having ADHD, were ages six to 18 years, and were just starting treatment. The Johns Hopkins Medicine Institutional Review Board approved the study.

Recruitment

Parents were recruited from November 2003 through September 2005 from primary care, developmental and behavioral, and specialty mental health pediatric outpatient clinics affiliated with a large teaching hospital in Baltimore City, Maryland. These different outpatient settings were sampled specifically to capture the breadth of perspectives from a range of families seeking care for what was ultimately diagnosed as ADHD for their children. Only parents whose children were just entering ADHD care were eligible for the study in order to avoid problems with their recall of experiences leading up to the initial diagnosis. The proportions recruited from each site were 14 parents from developmental and behavioral pediatrics (54%), ten from primary care (38%), and two from specialty mental health (8%). The overall response rate was 81%.

Clinicians who assessed and diagnosed children identified eligible parents during regularly scheduled appointments. They gave parents a study brochure that explained the study and included the lead researcher's contact information, and they informed the research team when a parent provided written permission to be contacted by telephone. Researchers obtained written informed consent from parents and adolescents age 12 or older and verbal assent from children ages six to 11.

Telephone interview procedures

On receipt of informed consent, we scheduled the telephone interview at a time convenient for the parent. For two parents, face-to-face interviews were conducted in a private room in an outpatient clinic because it was easier for them. Interviews were scheduled within one month after children were diagnosed as having ADHD.

Semistructured telephone interviews inquired about parents' understanding of their child's behaviors, perceptions and expectations for mental health treatment, and perceptions of their responsibility in their child's treatment. To obtain a retrospective history from when parents first noted the behaviors up to when a clinician first diagnosed their child as having ADHD, interviews began with the following statement: "Tell me how your child ended up with a diagnosis of ADHD." Parents also were asked what led them to seek care, what their first visit with a clinician was like, and what their expectations had been for the visit. Additional probes asked parents to compare and contrast their child's behavior with that of siblings or peers and to discuss what it would be like if their child's ADHD behaviors were resolved and how this could be achieved.

Confidential, voluntary participation was emphasized. The lead author and a trained research assistant conducted the interviews, which ranged from 31 to 62 minutes, were tape recorded with permission, and were transcribed verbatim. Family and child demographic characteristics and medical treatments were obtained from the child's medical chart.

Data analysis

Data were analyzed by following the methods for grounded theory (21). Initially, each member of the research team read the transcripts to identify the general topics discussed. Line-by-line coding was used to categorize the text by themes. This was an iterative process that used the constant comparative method, meaning that each new piece of text was compared within and across interviews with other passages coded in the category (21,22). As more data were coded, the dimensional properties of each theme emerged. This process was continued until no new information was gained—in other words, saturation was achieved.

Next, the causal conditions, individual strategies, intervening conditions, and resulting consequences of individual actions were explored to determine the relationship among the themes. The connections between the themes were displayed in a visual model that helped generate a theory of the circumstances leading parents to seek care for their child's behaviors. A data matrix was used to track the dimensional properties of each category and to examine the relationship to the other themes. Data were examined within and across participants in order to identify individual patterns. Family history of psychiatric illness, the child's coexisting diagnoses, and school and family life circumstances were entered into the data matrix and contributed to the interpretation of the patterns.

The research team met regularly to refine the coding scheme by elaborating, collapsing, or eliminating codes until there was consensus. This process ensured consistency in the identification and definition of the themes, in coding the data, and in our ability to assess patterns. Memos documented reflexive thoughts and critical junctures in our conceptualization of thematic categories and informed how we approached subsequent interviews.

Scientific rigor

To ensure data quality and credibility, triangulation of the data involved comparing the child's medical record with the information obtained in the parent interviews to confirm or validate the information. Moreover, our interpretation of the thematic categories was shared with clinical and qualitative research experts to obtain feedback regarding the completeness and accuracy of our analysis.

Results

Parent and child characteristics

Of the 26 parents, 22 (85%) were the child's biological parent and 20 (77%) were mothers. The four nonbiological primary caregivers (15%) were referred to as parents. Family history of psychiatric illness was present for 14 parents (54%) and included substance abuse (ten parents, or 38%), ADHD (six parents, or 23%), learning disorders (five parents, or 19%), and depression (three parents, or 12%).

The average child's age was nine years, 17 (65%) were boys, and 25 (96%) were African American. Of the 15 children (58%) with an axis I diagnosis in addition to ADHD, six had adjustment disorders (23%) and six had learning disorders (23%).

Conceptualization of child behaviors

Seven themes emerged from the retrospective histories of how parents came to seek medical care for their child. These were descriptions of the behavior, placing the behavior in context, making sense of the behavior, seeing the effect of the behavior, approaches to seeking information, managing the behavior, and parents' vision for their child. The relationship among themes described the interactive phases of identification, understanding, and acceptance as parents came to terms with their child's ADHD. Family and school situations affected how parents moved through each phase. The time from when parents first noted the behavior until they sought professional care ranged from less than one year to four years.

Identification. Many parents identified their child's behavior as out of context for what was expected of peers their child's age. They described their child as inattentive, unfocused, distractible, and in their own words, "a speeding robot," "got to get their run out," or "very out of control." One noted, "I just knew I didn't have these problems with my two older children." Others described a threshold, "people tear things up, but it's to a degree where his is not normal, it's not like the normal kind of breakage." For one it was emotional, "I don't think he should feel the way he does, which hurts me more." When children "seemed normal" to parents, it was often teachers, clinicians, family, or friends who noted the behaviors.

Understanding. Parents reflected on what caused the behaviors, how their child was affected, and how they could get answers as they developed an understanding. Behaviors were attributed to genetics, a medical condition, child development, or just "something within her." Prenatal drug or alcohol use, lead exposure, or early parenting practices also were thought to contribute to the behaviors. Some parents questioned how the behaviors developed. Many saw the problems affecting their child's academic performance and inability to control his or her behavior and follow directions. There also was difficulty in the child's getting along with family. For example, "Sometimes it would really work my nerves a little bit. … It can be very, very frustrating," or "A lot of times, I need a timeout." Or it interfered with home life: "It's just gotten worse. … I see him withdrawing from us. … He gets very angry, he acts out, and then he doesn't want to do things with me that he used to." A few noted emotional problems or low self-esteem as children saw how the behaviors affected their lives. Family disagreement about management strategies influenced when and from whom parents sought help. As one mother noted, "I would never come to him and say, 'Dad, I think he does have a problem,' because he's like 'oh no, there's no way in the world that he has a problem, he's just a boy.' " Some needed reassurance: "If there wasn't anything wrong, then I don't understand why he is the way he is, because then I would feel that it was something that my husband and I are lacking in as parents—that we're not doing right."

Acceptance. Eventually, parents accepted management strategies and discussed future goals. Most mentioned disciplinary changes or assistance with homework. Some sacrificed their own goals: "I took a year off of school. I haven't been to school since spring of last semester just so I can sit down with him every day and help him." Parents also discussed support programs or child recreational activities. Others did not do anything different or felt the school needed to make accommodations for their child's behavior. Some were reluctant: "I was kind of embarrassed because … I don't really want to feel that he needs help." Future goals focused mainly on academic success. Some longed for more basic things; for example, "I just want to be able to go shopping with her." Personal reflections included "I want him to have a better life than I had." Other parents characterized this as a phase, such as "Someday we will look back on this and say, 'remember when.' " Long-term outlooks included "I want him to be the best that he can be" or "I hope this won't affect his chances to get into college or get a job." Some realized the possibility of persistence into adulthood: "I'm hoping that he will be able to manage this without medication."

Coming to terms with ADHD

Four distinct patterns emerged that were based on how parents experienced the phases of identification, understanding, and acceptance. These patterns of coming to terms with ADHD were immediate resolution, pragmatic management, attributional ambivalence, and coerced conformance. Each participant was classified into only one pattern, as follows: ten (38%) used immediate resolution, eight (31%) used pragmatic management, two (8%) fit the pattern for attributional ambivalence, and six (23%) were classified as coerced conformance. Despite some overlap in how parents worked through each phase, each pattern had its own distinguishing characteristics (Table 1).

Immediate resolution. The immediate resolution pattern comprised parents whose main interest was finding a solution for the problematic behaviors. Child behaviors were viewed as ADHD symptoms, and ADHD was understood to be a medical condition interfering with academic performance and social relationships. Parents were eager for a medical resolution to the current problems. Some parents took longer to accept the situation because they initially thought that the behaviors were caused by a coexisting psychiatric disorder or because they had unfavorable experiences with a family member's psychiatric illness or psychotropic treatment.

Pragmatic management. Parents who fit the pragmatic management pattern viewed the behaviors as ADHD symptoms that were a medical or biological disorder with long-term consequences that they had to manage. They addressed the problems directly by seeking multiple types of help, including medical care. They described their child's behavior as the core ADHD symptoms and noted this was not typical of peers of similar age. They understood that ADHD was affecting their child academically and socially, and unlike parents using immediate resolution, this group's long-term views resulted in their learning about and engaging in medical and nonmedical interventions for managing ADHD.

Attributional ambivalence. The attributional ambivalence pattern was characterized by individuals who viewed their child's behaviors as problematic and atypical for children of similar age, but they did not necessarily describe the behaviors as symptoms of ADHD. They believed that the behaviors were caused by environmental or nonbiological factors or were related to other emotional problems that their child was experiencing. Primary concerns were the child's academic progress and emotional stability. Acceptance focused on religious beliefs or disciplinary tactics rather than medical interventions to manage the situation. Their process of coming to terms with the diagnosis was to gain information about treatment options, but they maintained a strong emphasis on their own philosophical approach to the problem.

Coerced conformance. These parents came to terms with the need to seek medical care for their child's problems but not actually with their child's ADHD. Parents whose process was one of coerced conformance endorsed theoretically opposing qualities relative to the other groups. These parents did not perceive the behaviors as problematic, did not conceptualize them as indications of an illness, and did not endorse specific strategies for short- or long-term management. Instead, their actions were motivated through the instigation of a third party, commonly the child's school.

Discussion

Parents whose children were just entering ADHD care provided rich, retrospective accounts of daily life experiences as they came to terms with their child's behavior before seeking professional care. Initial reluctance to view the behaviors as problematic or to accept the need for care prolonged this process by several years. Some only reluctantly accepted these possibilities. Concepts of identification, understanding, and acceptance are similar to the stages described for a sample of primarily white families who had to cope with their child's ADHD (23). The four patterns of coming to terms with ADHD correspond to concepts of choice, coercion, and "muddling through" in accessing mental health services (24). The pragmatic management and immediate resolution patterns reflected seeking care by choice, coerced conformance reflected coercion, and attributional ambivalence resembled individuals who access needed mental health treatment by "muddling through."

This study adds considerably to the relative paucity of research on the process of entering child mental health services by families in urban, minority, low-income neighborhoods. The sample was recruited from outpatient clinics in Baltimore City, where 64% of the population is African American. This is important because several studies documenting racial disparities in mental health services attributed disparities to stigma, mistrust, culture, attitudes, and neighborhood poverty (25,26,27,28,29). Parents of children with ADHD who live in the inner city and belong to minority groups reported that their relatives or close friends can be more influential than medical professionals in managing their child's behavior (30). Skepticism about the benefits of mental health care has resulted in 49% lower odds of attending an appointment (10). Moreover, African-American parents have less knowledge of ADHD (12), more concerns about psychotropic medication for children (13,31), and lower use of psychotropic medication than white parents have (2,3,32). It would follow that individual beliefs about disease underpin explanatory models for coming to terms with an illness and seeking care (8,33). The concepts of identification, understanding, and acceptance illustrate how beliefs are formed and how they feed into explanatory models. Such knowledge could assist clinicians in tailoring treatment plans to the individual minority child and his or her family.

These findings emphasize the importance of acknowledging family concerns and expectancies upon initial diagnosis and entry into care to foster stronger alliances, better engagement, and minimal treatment dropout (34,35). One could hypothesize that individuals who seek immediate resolution primarily for a school-related ADHD problem would be more likely to focus on academic success and less likely to implement management strategies at home, whereas the pragmatic management group may be easier to engage in multimodal interventions. The coerced conformance group may be families who terminate treatment shortly after fulfilling their "obligation" to seek care, unless they observe the value of treatment for their child and family. The attributional ambivalence group may require more education about the benefits and risks of treatment before full engagement in care. If these four patterns are confirmed in larger and more diverse samples, awareness of them may improve the effectiveness of community mental health services.

The study findings should be viewed in the context of several limitations. The views represented here are of parents who had contacted a health care professional regarding their child's behavior. These patterns may not reflect the perspective of families who never seek professional care, regardless of race. Mothers and fathers have different perspectives in caring for a child who is ill (36,37,38), and in this study mothers were the primary respondents. A goal of future work is to interview multiple informants who have different relationships with the child and, consequently, different views of mental health care. Although telephone interviews do not allow the interviewer to observe nonverbal communication, it is ideal for situations where access to individuals is limited and the information would not be collected otherwise. It is difficult to establish trust via telephone interviews, which can affect the breadth and depth of information that participants are willing to share. Realizing this, the study team used the face-to-face consent process to establish trust and build rapport.

Conclusions

This study explored how parents sought answers to the social, psychological, and behavioral issues that ultimately led to their child's ADHD diagnosis. The findings may inform outreach and educational programs designed to reduce racial disparities in access to and maintenance of children's psychiatric care, particularly if targeted for the early phases of coming to terms with an illness. This research may help clinicians identify distinct patterns of parental adaptations to children's behavioral problems. Identifying patterns most predictive of effective ADHD management and whether less engaging patterns are amenable to change could provide an important new approach to improving therapeutic outcomes for children with ADHD. A revised approach could lead to interventions that better prepare health care professionals to engage parents and families in ways that promote their respectful collaborations in treating these children.

Acknowledgments and disclosures

This research was supported by grant K01-MH-65306 from the National Institute of Mental Health. The authors thank the participants who graciously shared their experiences. The authors also are grateful to the clinicians who assisted with recruiting the study participants and to Courtney Weiner, B.S., for her assistance with this research.

The authors report no competing interests.

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Table 1. Patterns of coming to terms with attention-deficit hyperactivity disorder (ADHD) in relation to conceptualization of behaviors and approaches to seeking care