(submitted for doctoral study, Fall 2010)
Few medical decisions stir as much passion as the diagnosis of Attention-Deficit-Hyperactivity-Disorder, or ADHD, in children. Though considered by some to be a disease of modern origin, evidence of similar behaviors and subsequent physician analysis pre-date the 19th century. In 1798, physician Sir Alexander Crichton penned a chapter in his book, “An inquiry into the nature and origin of mental derangement: comprehending a concise system of the physiology and pathology of the human mind and a history of the passions and their effects” which he titled “Attention”. In the chapter Crichton noted that “The incapacity of attending with a necessary degree of constancy to any one object, almost always arises from an unnatural or morbid sensibility of the nerves, by which means this faculty is incessantly withdrawn from one impression to another” (p. 271). Crichton’s approach was a vast improvement over earlier assessments of unusual behavior in children. Commonly viewed as “proof” of devilish influence, out of character behavior by young children (mostly girls) was often attributed to the work of Satan and his minions. The behavior in question is usually documented as young girls who acted strangely; having fits, throwing items around the room and acting out of character according to the standards and expectations of the community. Local clergy were called upon to document such behaviors and they routinely characterized them as more severe than would be expected of a natural affliction. This pronouncement from respected community members, in combination with other political and social forces in play at the time, led to the widespread belief that the unacceptable and unexpected behaviors were attributed to witchcraft (Karlsen, C.F., 1987). More modern observations like that of Adam Rafalovich (2005), who remains deeply critical of what he sees as the medicalization of childhood behaviors, posit that the medical approach to managing childhood behaviors for some, deserves similar suspicion and scrutiny to the pronouncement of bewitchment. Noticing odd behaviors in children is referenced throughout historical writings, but the medication of children to control these behaviors is clearly a late-20th century phenomenon. This study seeks to view the phenomenon of medically managing childhood behaviors through an examination of the communication cycle (between the elementary school, and specifically the teachers and counselors, the parents and eventually the physician) that ultimately leads to a children being considered for prescription medication to control school-based behaviors.
Some of the biggest issues in the debate over medically managing ADHD are related to the meteoric rise in the prescription rate for stimulant medications prescribed to treat the symptoms of ADHD. Between 1990 and 1999 the increase in the number of prescriptions written for stimulant medication to treat ADHD is estimated to represent an increase between 3-to-6-fold for that period (LeFever, Dawson and Morrow, 1999) while other sources hold its growth at closer to 700% for the same period. Although ADHD has only ever been estimated to affect around 3% – 5% of the population (LeFever, Arcona, and Antonuccio, 2003), this trend does not appear to be reversing. These and other findings have helped to fuel the debate when prescribing patterns are evaluated.
In 2007, the periodical PEDIATRICS reported on the National Survey of Children’s Health Data that 7.8% of American children age 4 – 17 have an active diagnosis of ADHD and 4.3% of children age 4 – 17 have both an active ADHD diagnosis and are taking medication for the disorder, meaning that of the sample population who identified as being diagnosed with ADHD, 56% are taking some form of stimulant medication to control the symptoms (Visser, Lesesne, and Perou, 2007). In fact, the number of individual prescriptions written for these medications grew from 28.3 million in 2004 to 39.5 million in 2008 (Vedantam, 2009). These numbers and trends are further complicated by reports of adverse effects of these medications which are often more problematic than the symptoms they were prescribed to address.
Reports on the effects documented from the administration of stimulant medication to children range from personality changes, increase in tics (involuntary body movements as seen in Tourette’s syndrome), weight loss, insomnia, growth suppression, headaches/stomachaches, to more significant issues involving cognitive changes and psychotic behaviors (Wolraich, M., 2007). The risks of greatest concern however involve the cardiovascular system. From 1999 – 2003 twenty-five deaths occurred and were attributed to sudden cardiac death in patients being treated for ADHD with stimulant medications, nineteen of them children (Wilens, Prince, Spencer and Biderman, 2006). Although these deaths represent a statistically small proportion of all known patients taking stimulants, the risk of prescribing these medications had enough of an impact to spur the Federal Drug Administration’s Drug Safety and Risk Management Advisory Committee to recommend that a “black box” warning be attached to all stimulant medications being prescribed for ADHD and similar conditions based on the reports of adverse reactions and the risk of severe outcomes in some patients (Nissen, 2006).
The significant body of research that exists on ADHD as a syndrome or disease often seeks to document a biological or genetic predisposition, the pharmacological management of the symptoms, or the efficacy of the agents or the dangers associated with prescribing them to young children. Fewer studies have examined the role of educators and school officials in the identification of potential behavior issues in children, but this does not mean that educators have escaped criticism for their roles or perceived participation in the trend to medicate for behavior. In her 2007 article, “The ADHD Epidemic in America”, J.M. Stolzer reports that “behaviors that were once considered normal range are now currently defined as pathological by those with a vested interest in promoting the widespread use of psychotropic drugs in child and adolescent populations” (p. 109). Stolzer also reports that American schoolchildren account for 80% – 90% of the consumption of all the methylphenidate (e.g. Ritalin) produced worldwide, which, in combination with the data on the increase in prescribing patterns lends credence to statements like this one: “the little box of normal is getting smaller”, which Navarro and Danforth (2004) reported in a research study that included interviews with parents of school children who were being tested related to behavioral issues in school. Since teachers do not diagnose or prescribe, and school psychologist and counselor roles are limited to non-pharmacological interventions, it would be useful to identify the pathways that lead to the prescription of stimulant medication by a pediatrician or family practice physician. This is especially critical if as reported in some corners, primary-care physicians often eschew standardized diagnostic criteria when diagnosing ADHD (Kellerher & Larson, 1998). Given that these 2 groups of professionals are not located in the same work environment, the end result of a decision to medicate may originate in the relationship and communication that occurs between key individuals (actors) in a child’s life, namely: parents, teachers, school counselors and physician ( or pediatrician).
This research study will identify and document the relationships that exist between teachers, counselors, parents and pediatricians when a child exhibits signs that may be suggestive of ADHD and will map the communication as perceived and interpreted by the parent(s) during the cycle of identification, referral, diagnosis and treatment that may result in the use of medication to manage the child’s behavior.
Research questions to be posed in this study will include:
- Who are the primary actors that participate in the discussion of a child’s behavior?
- If there are secondary actors, what are their roles?
- Do secondary actors ever become primary actors in the cycle?
- What is the most common route of referral that ends in medical management of ADHD?
- Teacher à Counselor à Parents à Pediatrician?
- Parent à Teacher à Counselor à Parent à Pediatrician?
- At which point in the cycle is the child (e.g. the parents) most likely to be pushed toward or away from medication as the solution?
- Which actor is most likely to recommend medication?
- Which are most resistant to this as a solution?
- What reasons are given for each position?
- What other options are presented by the various actors before medication is recommended?
- Which actors are more likely to recommend or support alternative options?
The study of this cycle of communication and the character of the relationships among and between the pertinent actors as perceived by the parents, who are the ultimate decision-makers for their children, will provide insight into the drivers behind the use of medication as a management tool for ADHD, highlighting in particular the role that the educational institution plays in the decision to medicate or not.
The theoretical foundation for this study is rooted in the perspective of those researchers who are critical of the education and medical professions for the increase in referrals and prescriptions written to control behaviors associated with a diagnosis of ADHD. This will include writings of Rafalovich (The Conceptual History of Attention Deficit Disorder, Framing ADHD Children, Criminalization or Medicalization: Social Class as a Predictor of Labeling Outcomes), Stolzer (The ADHD Epidemic in America), Baughman (The ADHD Fraud), Breggin (Talking Back to Ritalin, The Conscience of Psychiatry, The Ritalin Fact Book) and others. This study will not seek to prove or disprove the existence of ADHD, nor the efficacy of medications prescribed, given that this lens – through which the school-parent-physician communications are to be examined – already presumes artificially-elevated diagnostic rates and overmedication of children for behavioral control. These communications will then be evaluated from the perspective of C. Wright Mills, whose theory on power and those in elite positions is outlined in his 1956 book “The Power Elite”. Mills’ theories as articulated in this particular work suggest that regular (e.g. powerless) people are unable to resist the manipulations of the powerful class in society, such as corporate and political leaders and the military. While the military likely has very little to do with medication decisions for treating ADHD in random elementary schoolchildren, there is substantive documentation that corporate interests are being served (pharmaceutical companies’ profits) as well as political interests, as manifested in federal mandates for K – 12 education. Children are the most powerless in the ADHD medication equation, but it is also quite plausible, from a Mills’ viewpoint, that the parents are equally powerless in the ultimate decision on whether or not to medicate their child based on school-observed behaviors.
ADHD is a complex and multi-faceted issue, and consists of numerous sub-topics including the increased numbers of children diagnosed with ADHD in recent years, upward trends in medication as a management tool for ADHD, the role of the educational system in diagnosis, controversies surrounding the use of stimulant medication on children, ADHD in adults, ADHD and substance abuse, alternative therapies as an option for treating the child with ADHD, and more. The literature is plentiful on most of these issues. Evaluating the validity of medication as a management tool for behavior is beyond the scope of a research paper within a school of education, however; exploring the accepted rationale for the use of medication when the diagnosis may originate from a school – based referral is appropriate and important to any evaluation of the role that educators play in the path leading to the medical management of childhood behaviors. In reviewing related literature, the preliminary research for this paper focused on the trend in medication use for behavior issues, the controversies surrounding the diagnosis and the medications used in treatment, and the general role that educators play in the referral for medication management of ADHD or similar behavior as observed in the academic setting.
Numerous studies have been undertaken in different communities in an attempt to quantify approximate medication usage for the management of ADHD symptoms. In 1987, a study documented the use of medication in the city schools of Baltimore Maryland were 6% among the elementary population (Safer and Krager, 1988) as 6% of the students, while a later study in 1995 documented evidence that approximately 9% of students in 2 Virginia school in grades 2 through 5 were being treated with stimulant medications for ADHD (LeFever, Dawson and Morrow, 1999). While useful at the local level, community-based data did little to support national policy or best practice recommendations nationally. Many of the local studies were confounded by factors such as found in a survey of school nurses in 2000 from Maryland public elementary schools that estimated 3.7% of the school children were being medicated for ADHD (Safer and Malever, 2000). This particular study was limited significantly due to the number of children being prescribed the new, longer-acting stimulant medications that parents were able to dispense at home before the child leaves for school, thereby eliminating the need for any intervention by the school nurse (Rowland, A.S., Umbach, D.M., Stallone, L., Haftel, J., Bohlig , E. M., Sandier, D.P., 2002). By 2007, however, national data would be available. In a report by Visser, Lesesne, Perou (2007) in the periodical PEDIATRICS, data from the National Survey of Children’s Health Data was explored, where it was revealed that 7.8% of American children from the age of 4 up through age 17 had an active diagnosis of ADHD. At the same time, 4.3% of American children in that same age cohort had both an active ADHD diagnosis and are taking medication for the disorder. Of the population identified with a diagnosis of ADHD, 56% are reported to be taking a stimulant medication to control the symptoms. Toward the end of the twentieth century, as children were increasingly being referred for medical management of behavior issues, the National Institutes of Mental Health (NIMH) released a landmark study on treating children with ADHD (Jensen, P. S., Hinshaw, S.P., Swanson, J.M., Greenhil, L. L., Connors, C.K., Arnold, L., et al). In this initial study (there have been several follow-up studies), the research team reported that the children treated with medication fared much better than others who received either the cognitive therapy or standard medical care. In this study, participants were randomly assigned to a treatment group where medication, medication plus cognitive therapy, cognitive therapy alone, or standard care was rendered. Immediately upon release of this study, pharmaceutical manufacturers sent research article reprints to family practice and pediatric physicians across the nation to assist primary care providers with the management of these patients. This may have played some role in the uptick of prescriptions being written for stimulant medications: the number of stimulant prescriptions written for children continued to grow in the period following the release of the NIMH study, and by 2008, the number of prescriptions reached 39.5 million, growing more than 28% from 2004 when 28.3 million prescriptions were dispensed (Vedantam, 2009). To provide a context in terms of total pharmaceutical output, in 2008 the Kaiser Family Foundation (2009) estimates that 3,649,468,866 prescriptions were processed in the United States. While these medications then constitute just over 1% of all medications written, the concern becomes the actual need for them, and the increasing documentation of adverse effects, and declining benefits of using these medications.
Other researchers have questioned the validity of the widespread use of the Conners’ Rating Scale – Revised as well as the ability of parents or teachers to accurately or appropriately evaluate a child with a questionnaire. Furman (2005, p. 994) suggests that the “use of subjective informant data via scale or interview dies not form an objective basis for diagnosis of ADHD.” A major controversy with the Conners’ Rating Scale-Revised is that the same population was used in the development and the testing for validation of the instrument. Still others have openly suggested that disparities seen in the rate of ADHD diagnoses at private schools (quite low) as compared to public schools (much higher) can be attributed to the 1991 amendment to the Americans with Disabilities Act. Cohen (2004) and others wonder publicly if the fact that each child who is diagnosed with a behavioral (or psychiatric) disorder generates payments from the federal government under the ADA has any influence – consciously or unconsciously – on the willingness of teachers and other educators to call in a referral for outside evaluation and potentially, a qualifying diagnosis.
J.M. Stolzer (2007) reports that ADHD “is the most commonly diagnosed mental illness in children in the United States today, and approximately 99% of children diagnosed as ADHD are prescribed daily doses of methylphenidate in order to control undesirable behaviors.” (p. 109). Her claim on the volume of diagnoses is bolstered by the National Institutes for Mental Health, who also report ADHD as the most commonly-diagnosed childhood illness, as noted in the Multimodal Treatment Study of ADHD and its follow-up studies (Arnold, L.E., Abikoff, H.B., Cantwell, D.P., Conners, C.K., Elliot, G.R., Greenhill, L.L., et al, 1997; Jensen, P. S., Hinshaw, S.P., Swanson, J.M., Greenhil, L. L., Connors, C.K., Arnold, L., et al., 2001). As a staunch critic of not only the use of stimulant medication to control the behavior of children, Stolzer argues that the diagnosis of childhood behaviors as a pathology is subjective at best, and questions the motives of the application of this diagnosis, noting that almost 90% of the worldwide use of Ritalin is among school children in the United States. Stolzer’s criticisms on the diagnosis alone focus on what she, and other critics, such as Peter Breggin, MD – author of Talking Back to Ritalin (and other similar books) see as highly subjective. Stolzer suggests that ADHD is pronounced as the problem in a child based primarily on a checklist of behaviors to which teachers and parents select answers to questions about the behaviors. The questions are answered using a Likert-type scale where answers are limited to: Always – Often – Sometimes – Rarely – Never. Stolzer argues that “these limited answers are highly subjective and vary tremendously from one rater to the next. Until these terms are universally and quantitatively defined, the validity and reliability of the ADHD diagnosis must be scientifically repudiated” (p. 111). Breggin (1995) suggests that many of the questions on the assessment defy objective analysis, such as using the scale listed above to assess if the child fidgets with hands or feet, runs about or climbs more than normal, plays more loudly than other children or makes mistakes in their schoolwork. Experts from several academic and professional perspectives have suggested that the questions may quantify adult frustration more than child neurology (Baughman, 2006; Stolzer, 2007) and recent research may provide evidence in partial support of this contention.
Research into potential non-physiological origins of ADHD has resulted in the identification of peer to peer interactions and, more specifically, age-based discrepancies in these interactions as a potential factor in a child being referred for and diagnosed with ADHD. Evans, Morrill and Parente (2010) in a study on the age of children at school entry report that children who are older, by comparison to their class peers, have a significantly lower incidence of ADHD diagnosis and treatment than do children who are sent to school at or just before meeting the age-deadline for school entrance. This seems to suggest that there may be a relationship to children’s abilities to relate to their peers and their behavior in the school setting, which is often the first place that behavior is identified as out of normal range. Another study on personal interactions by O’Connor, Dearing and Collins (2010) reported on the quality of the teacher-student relationship for students in Kindergarten through sixth grade, highlighting outcomes that indicate there is evidence that positive teacher-child relationships result in better social skills and less conflict. Studies on ADHD often highlight the social skills deficit of the diagnosed child, such as the study by deBoo and Prins (2007) which documents a high incidence of peer rejection and social isolation for these children. It is plausible that this oft-reported outcome has created a belief that children with social skills challenges may have ADHD, creating a reverse diagnostic observation – if children with a known ADHD diagnosis are often awkward socially, then children who are awkward socially may also have ADHD. These potential leaps of logic should be cause for caution when evaluated against research on the age cohort differences and teacher-child relationship data.
In his research on the medicalization of unruly children, Rafalovich (2007) describes the pre-labeling of children, based on behaviors observed in the educational environment – namely by classroom teachers: “the suspicions that lead to an ADHD diagnosis overwhelmingly stem from troubles in a school context.” (p. 28). From his many interviews with teachers and parents, Rafalovich contends that the diagnosis of ADHD begins with the teacher, going so far as to describe them as “markedly influential in the diagnosis of ADHD” (p. 28). The education corner soundly rejects this and has for at least a decade. In testimony to the House Oversight and Investigations Subcommittee of the Education and Workforce Committee, Judith Heumann asserted, “Diagnostic responsibilities and decisions must be left to physicians and families. Educators can often provide input about the student’s behavior that may aid in a diagnosis but it is not the role of the school or the educator to make recommendation for treatment”. This policy stance is likely reflected in many if not most of the public schools across the country, and it is equally likely that the educators themselves believe this to be the case. This being the case, the question is less about educational diagnoses, and more about influence felt by the parents when the school summons them to discuss their child’s behavior.
The primary method for identifying the communication cycle in the elementary school setting will be the use of narrative inquiry or interviews, and focus group sessions. These interviews will primarily target parents of children who have been identified as having behavioral concerns, but will also reach out to teachers in elementary grades 1 – 5, school counselors or nurses who are involved in the evaluation of children identified as having behavior issues and pediatricians who see patients for an evaluation concerning behavior in school. Parents will be the first group approached. Using personal contacts and referrals, and subsequently utilizing a snowball (referral) sampling technique, parents will be interviewed about the progression of identification of the problem (home or school); recommendations from school; parental concerns; similar home issues (if any); physician interaction and recommendations and final parental decision. Particular attention will be paid to what sense the parents had of any interventions as “required” or “recommended” by the school, and if the physician/pediatrician offered alternatives to medication. Data such as the length of time spent on the issue (in minutes) and the number of visits before a prescription was rendered will be collected as well. Of specific interest will be any beliefs or feelings the parents held before talking with the school and after talking with the school, and how those conversations influenced their decisions afterward, and ultimately, their child’s circumstance. The focus group interview will be utilized with parents, exclusively in this study, and is designed with the intention of collecting the experiences parents had when contacted by their child’s school that there was a problem. The comfort of the group discussion may allow parents to feel less like their parenting is being questioned which in turn may foster more open and honest discussion of their reactions to the school’s position, and their feelings about the entire situation. Hearing from other parents about their experiences may alleviate any reluctance to self-report behaviors or reactions that seem weak or indecisive if reported to someone they could perceive as an “expert”.
Group size is a critical factor in focus groups. Although there is no one mandated “best size” for a group, with good results being reported in some literature from groups as small as 2 and as large as 20 (Peek and Fothergill, 2007), for this topic a smaller size will be utilized. Six or fewer participants, who have something in common aside from the issue of a child with behavioral issue, will be brought together for each group. It is the human experience to judge, and be judged. Few judgments are as sensitive as those based on parenting decisions, therefore; the focus group composition will be controlled to bring together parents with similar socio-economic, racial/ethnic and religious backgrounds, and home environments. For example, one group will be parents from 2-parent households, where another group will investigate the experiences of single mothers. Parents in homes where the mother stays at home will be grouped separately from parents with 2 working parents. Cultural differences in childrearing will be acknowledged by grouping African-American, Caucasian, and Asian parents separately so to get the most rich and open responses from each group. These group demarcations are not intended to identify racial or ethnic differences in responses, but to foster as non-judgmental as possible environment that will produce the best feedback about the issue of their children’s behaviors and the schools’ roles in alerting them to the issue. The data from these groups will be presented in narrative format, revealing as much of the raw input as is possible, and allowing the voice of the parents tell the story of their experiences.
Identifying school districts willing to share this information will be more difficult. Previous inquiries have revealed a general reticence to document in any detail to the outside world how this is handled. Ideally, the study would compare documented policies on the identification, intervention and referral process for students believed to be exhibiting signs of a behavior disorder with actual statements from teachers and counselors involved in the processes described. Colleagues working in education positions will prove helpful to opening these doors, but the access will be limited, depending on the district, the individual principal at each building and the teachers and counselors involved. A snowball sampling technique will also be used for teachers and counselors. It is possible that a number of the parents being identified in the focus groups will themselves be educators, or have family members who are educators and would be willing to participate in an interview.
The clinicians – pediatricians and family practice physicians – may be the most difficult group to get participation and cooperation from, based on 2 primary factors: time and litigation. The time constraints of family practice and pediatric practitioners are well-documented. Finding a willing participant to sit down with a researcher to discuss a topic of limited interest and little value to their particular practice will be a challenge. Add to this any concerns about the legal ramifications of speaking frankly on this issue, and the chances of gathering significant interviews seem at this juncture to be a long shot. To mitigate this fact, however; the access to pediatric researchers who also see patients in the academic medical center affiliated with this university may prove useful. Once an initial contact with a practitioner is made, the snowball sampling technique will again be utilized to assist in identifying potential interview candidates.
Another potential barrier or bias with this group is the attitudes of physicians toward the influence of pharmaceutical companies. While a number of research studies in the past few years have documented the pervasive influence of even small gifts like pens and bagel breakfasts, physicians remain unconvinced that their professional acumen could be unduly influenced by the presence of pharmaceutical salespeople, promotional items and other influential activities, or worse – believe they have a right to the freebies, based on the sacrifices they have made to get where they are, professionally (Sah and Loewenstein, 2010).
The significance of this study could be documented from a number of perspectives, but the primary focus of will be to identify where in the communication cycle between the schools and parents, the decision to medicate crosses that point of no return. In the documentation of this communication, parents, especially, can be provided potentially more options for making decisions about their child’s behavior management and make those decisions with a more complete picture of the situation.
After more reading and conversations with parents of children with varying diagnoses or school problems, the litigation-wary landscape of physicians and past experience interviewing school officials, my approach will be shifting for my dissertation. I do not believe that I will be able to secure straightforward and candid interviews with school officials or physicians about their communication with students and parents regarding behavior issues and medication. In numerous conversations with educaotrs from diverse environments I was told that they had never seen a child taken to a physician for an assessment who came back without medication. Parents with whom I have spoken informally have shared their doubts that I could get school officials to discuss anything but the “company line”. Still, this communication is important to evaluate, given the risks in either direction. Therefore, I plan to redirect my research questions to address the parents, only. In this approach I hope to capture their interpretation of the schools’ message about their child’s behavior. Regardless of the original message, it is the interpretation of that message and the subsequent actions taken that will ultimately impact the child and result in a decision to mediate or not to medicate.
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