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The Problem with ADHD: Researchers’ Constructions and Parents’ Accounts

Abstract

An enduring controversy over the nature of ADHD complicates parents’ decisions regarding children likely to be diagnosed with the condition. Using a fallibilist perspective, this review examines how researchers construe ADHD and acknowledge the controversy. From a systematic literature search of empirical reports using parents of ADHD-diagnosed children as primary informants, 36 reports published between 1996 and 2008 (corresponding to 30 studies) were selected. Data on the studies’ characteristics and methodologies, definitions of ADHD, and extent of the acknowledgment of the ADHD controversy were extracted, as were data on a wide range of parental concerns and experiences. Researchers in 27 of 30 studies define ADHD as a valid disorder, in 22 studies they tend to recommend parental adherence to the biomedical view, and in eight studies they specifically acknowledge an ADHD controversy. This body of studies reports varied and poignant observations on parents’ situations and dilemmas. Still, it largely reflects a Western-ethnocentric view and appears greatly preoccupied with parents who do not medicate their children, ignoring parents’ rationales for using medications.
ORIGINAL ARTICLE
The Problem with ADHD: Researchers’ Constructions
and Parents’ Accounts
Bora Pajo David Cohen
!Springer Science+Business Media B.V. 2012
Abstract An enduring controversy over the nature of ADHD complicates parents’
decisions regarding children likely to be diagnosed with the condition. Using a
fallibilist perspective, this review examines how researchers construe ADHD and
acknowledge the controversy. From a systematic literature search of empirical
reports using parents of ADHD-diagnosed children as primary informants, 36
reports published between 1996 and 2008 (corresponding to 30 studies) were
selected. Data on the studies’ characteristics and methodologies, definitions of
ADHD, and extent of the acknowledgment of the ADHD controversy were
extracted, as were data on a wide range of parental concerns and experiences.
Researchers in 27 of 30 studies define ADHD as a valid disorder, in 22 studies they
tend to recommend parental adherence to the biomedical view, and in eight studies
they specifically acknowledge an ADHD controversy. This body of studies reports
varied and poignant observations on parents’ situations and dilemmas. Still, it lar-
gely reflects a Western-ethnocentric view and appears greatly preoccupied with
parents who do not medicate their children, ignoring parents’ rationales for using
medications.
Keywords Attention-deficit hyperactivity disorder construct !Researchers’ views !
Parents’ views !Fallibilism !Critical perspective !Qualitative studies
Re
´sume
´La nature du trouble de de
´ficit d’attention/hyperactivite
´(TDAH) fait
toujours l’objet d’une vive controverse, ce qui complique les de
´cisions des parents
d’enfants susceptibles d’e
ˆtre diagnostique
´s. Dans une perspective faillibiliste, cette
B. Pajo !D. Cohen
Stempel School of Public Health and Social Work, Florida International University,
Miami, FL, USA
B. Pajo (&)
28 Majorca Avenue, Apt 1, Coral Gables, FL 33134, USA
e-mail: bora.pajo@gmail.com
123
IJEC
DOI 10.1007/s13158-012-0064-z
recension examine comment les chercheurs conc¸oivent le TDAH et reconnaissent
cette controverse. Suite a
`une recherche syste
´matique de rapports empiriques dont
des parents d’enfants diagnostique
´s de TDAH sont les informateurs principaux, 36
publications (correspondant a
`30 e
´tudes), parues de 1996 a
`2008, ont e
´te
´se
´lec-
tionne
´es. Nous en avons extrait les donne
´es sur les caracte
´ristiques, les me
´thodo-
logies, les de
´finitions du TDAH, le degre
´de reconnaissance de la controverse, ainsi
qu’une grande varie
´te
´de ce que ces e
´tudes rapportaient des expe
´riences et des
pre
´occupations des parents. Dans 27 des 30 e
´tudes, les chercheurs de
´finissent le
TDAH comme une entite
´clinique valide, dans 22 e
´tudes, ils tendent a
`recommander
l’adhe
´sion des parents au point de vue biome
´dical et, dans 8 e
´tudes, ils recon-
naissent spe
´cifiquement une controverse relative au TDAH. On trouve dans ce
corpus nombre d’observations poignantes sur les situations et les dilemmes des
parents. Il refle
`te ne
´anmoins largement un point de vue ethnocentrique occidental,
ou
`la pre
´occupation principale semble re
´sider dans le fait que certains parents ne
donnent pas de me
´dicaments a
`leurs enfants, ignorant les motifs des parents pour
utiliser la me
´dication.
Resumen Una constante controversia sobre la naturaleza del Sı
´ndrome de De
´ficit
de Atencio
´n con Hiperactividad (SDAH) complica las decisiones de padres de
familia de nin
˜os que podrı
´an ser diagnosticados con esta condicio
´n. Usando una
perspectiva au
´n falible, pero extensa, esta evaluacio
´n examina co
´mo los investi-
gadores interpretan SDAH y reconocen la controversia. Desde una revision siste-
ma
´tica de la literatura investigativa de reportes empı
´ricos, en que se incluı
´a a padres
de familias con nin
˜os diagnosticados con SDAH como informantes primarios, se
seleccionaron 36 reportes publicados entre 1996 y 2008 (correspondientes a 30
estudios). Se extrajo informacio
´n de las caracterı
´sticas y metodologı
´a de los estu-
dios, definiciones de SDAH, y el extenso y pole
´mico conocimiento de SDAH, como
tambie
´n informacio
´n del amplio rango de preocupaciones y experiencias de los
padres de familia. Investigadores en 27 de 30 estudios definen SDAH como un
desorden va
´lido, en 22 estudios tienden a recomendar a los padres adherencia a la
opinio
´n biome
´dica y en 8 estudios reconocieron especı
´ficamente una controversia
de SDAH. Este cuerpo de estudios reporta observaciones de situaciones diferentes y
penosas de los padres de familia. Au
´n ma
´s, refleja claramente una visio
´n et-
noce
´ntrica occidental que parece enormemente preocupada por los padres que no
medican a los nin
˜os, ignorando el juicio y razones de los padres para usar o no
utilizar medicamentos.
Introduction
Because of their involvement in all decisions related to diagnosing and treating
attention deficit/hyperactivity disorder (ADHD) in their children (Hansen and
Hansen, 2006), parents may be posited at the core of this phenomenon. Parents
usually first notice their children’s differences or difficulties or are first notified by
teachers about ADHD-like behavior or school problems (Sax and Kautz 2003).
Professionals who evaluate children listen to parents’ descriptions and often have
B. Pajo, D. Cohen
123
them fill out behavior rating scales. Parents make treatment decisions based on
professionals’ recommendations, their own cognitive schemas (Arcia et al. 2004),
opinions from friends and relatives (Jackson and Peters 2008), and media reports
(Taylor et al. 2006). Parents’ decision-making, however, is complicated by an
enduring controversy among experts and laypersons about the nature of ADHD and
the benefits of long-term use of stimulants (Mayes et al. 2008). Knowledge on what
bothers parents about their children’s behavior, how they view their options, and
what they see as the consequences of their choices remains largely anecdotal,
although studies have attempted to capture parents’ views and experiences on these
issues. To accurately conceptualize the findings of this body of research, however,
it seems necessary to first understand the framework used by researchers to capture
parents’ views and experiences. In this review, we use the enduring ADHD
controversy as a lens to examine how, in empirical studies that elicit parents’ views
and experiences about their children’s ADHD, researchers construct these parents’
problems and their children’s problems.
The ADHD controversy
In the United States between 1996 and 2006, the prevalence of the ADHD diagnosis
increased by 3 % annually, and an average of 5.5 % from 2003 to 2007 (Pastor and
Reuben, 2008). In 2007, 9.5 % of US children aged 4–17 years were diagnosed as
having ADHD, 2.7 million of which (66.3 % of children diagnosed) were prescribed
stimulants such as methylphenidate and amphetamines (CDC 2010). Yet, controversy
about ADHD has existed since the first use of stimulants with school children in the
late 1960s (Schrag and Divorky, 1975) and the subsequent inception of the diagnostic
term in the third edition of the diagnostic and statistical manual of mental disorders
(DSM) in 1980, and the expansion of the diagnostic category in the fourth edition in
1994 to include signs of hyperactivity, impulsivity, and inattention (American
Psychiatric Association 2000). Today, most experts might maintain that ADHD refers
to a disorder of impulse control (Barkley 2000) and impaired working memory
(Rucklidge 2006) accompanied by brain volume abnormalities (Castellanos et al.
2002). Others use the term only to indicate the lack of fit of a child’s temperament with
a structured environment (Diller and Tanner 1996), a label for normal disruptive or
inattentive children (Stolzer 2005), or a only a culturally-situated construct (Timimi
and Taylor 2004). ADHD is variously called a ‘‘condition’’, ‘‘disorder’’, ‘‘disability’’,
or ‘‘disease’’ (Arcia et al. 2004), but occasionally an individual ‘‘difference’
(Carpenter and Austin 2007), even an ‘‘evolutionary advantage’’ (Armstrong 2006).
The variety of labels reflects the failure to biomedically detect or confirm ADHD
despite the primacy of the biomedical perspective to account for it theoretically.
Debates between professionals about the validity of an entity ADHD have been heated
(Barkley et al. 2002; Jureidini 2002). Proposed revisions to the ADHD diagnostic
criteria for DSM-V, scheduled for publication in 2013, still include no neuropsycho-
logical or biological criterion.
Debates between professionals have notably focused on the use of psychotropic
drugs to treat ADHD. Drugs’ short term ability to reduce ADHD symptoms is well
The Problem with ADHD
123
established (Biederman et al. 2006), but routine adverse effects such as insomnia,
appetite and weight loss, increased blood pressure, depression, and temporary
growth suppression worry some observers (Breggin 2000). Although the ADHD
controversy has lessened lately in the United States—possibly as other disruptive
early-childhood behaviors became medicalized and other psychotropic drugs such
as antipsychotics became increasingly prescribed to children (Azerad 2010)—
researchers observed an association between methylphenidate use and sudden
unexplained death among children without prior heart conditions (Gould et al.
2009), leading to renewed debate (Vitiello and Towbin 2009). Moreover, situational
factors such as later birth date relative to other children in the same grade have been
shown to increase a child’s likelihood of being diagnosed with ADHD and receiving
stimulants by 40 percent (Elder 2010). Such controversies are widely aired by the
media. Undoubtedly, parents of children diagnosed with ADHD are interested, if not
confused or worried, listeners.
The ADHD controversy suggests that researchers count among the stakeholders
in the ADHD phenomenon, approaching their investigations with varying assump-
tions about ADHD, its management, and the choices facing parents. According to
Popper (1963), knowledge may be conceptualized as scientific only to the extent
that it leaves itself open to criticism and researchers seek to devise tests to falsify
reigning hypotheses. Given an assumed characteristic of knowledge as provisional
and conjectural, progress in a field of investigation thus largely rests on the
willingness to submit its key constructs to refutation, because findings that result
from attempts to refute key constructs typically raise new problems that demand
explanation.
In this article, we focus on studies that have sought to identify the concerns of
parents who raise children diagnosed as ADHD, and we assess to what extent these
studies reflect a fallibilist ideal. Because most relevant studies that we located are
social qualitative studies resting on induction, however, we judged that the issue of
tests designed to attempt falsification of reigning hypotheses was less relevant than
the researchers’ ‘‘critical attitude’’ (Popper 1999), which we operationalized in this
study as researchers’ openness to acknowledging that an ADHD controversy exists.
In the contemporary environment, where the preeminent biomedical perspective
passively or actively marginalizes competing discourses on the nature of ADHD
(Visser and Zenib 2009), acknowledging the existence of the ADHD controversy
could constitute a measure of the researcher’s willingness to remain self-critical, if
not to entertain falsification of the ADHD construct. Inversely, a lack of
acknowledgment of the controversy would signify the opposite. Moreover, we
supposed that the presence or absence (or degree) of any acknowledgment might be
associated with different sorts of research concerns or problem statements.
According to one review, peer-reviewed publications and popular media articles
published between 1987 and 1998 implied or stated that ADHD is a condition
rooted in children’s brains (Schmitz et al. 2003). We thus expected that studies with
parents of ADHD children would primarily rely on this reigning perspective, as
would the interpretation of parents’ accounts. Yet, we also expected that the
seemingly inescapable ADHD controversy would find its way into the accounts of
parents and in the constructions of researchers. Thus in this review, we attempt:
B. Pajo, D. Cohen
123
1 to conceptualize how—in empirical studies using parents of ADHD children as
primary informants—researchers construe ADHD and the controversy over its
nature; and
2 to draw possible links between these empirical studies’ findings on parents’
views and concerns and researchers’ constructs of ADHD.
In the discussion, we try to use our findings from both efforts above to advance
research into, and understanding of, the ADHD phenomenon.
Methodology
Search strategy and selection of publications
Searching for English-language publications appearing before November 2008 in
the ERIC, MEDLINE, PsycINFO, Social Work Abstracts, and Sociological
Abstracts databases, we included keywords (parents, children, attention deficit
hyperactivity disorder, and their variants) appropriate to each database. This yielded
689 records, of which we selected 224 on the basis of format (peer-reviewed articles
and chapters), title, and non-duplication. Dissertations were excluded because of
difficulties in retrieving the entire text, and challenges in examining and comparing
their extended information with limited information from journal articles. Subse-
quent inclusion and exclusion criteria narrowed the literature to empirical studies
using parents as primary informants on their views and experiences related to any
aspect of raising ADHD children. This produced 26 eligible reports. A manual
search of their references yielded ten more publications, resulting in 36 included in
this review (Fig. 1).
Data extraction
From the reports, we extracted data on:
1 studies’ characteristics and methodologies;
2 researchers’ ADHD constructs and broader theoretical perspectives; and
3 parents’ views and concerns.
Data on the first two topics were extracted and summarized by each author
independently. Data extraction on researchers’ constructions focused on:
1 definition or description of ADHD (ADHD as a valid or questionably valid
construct); and
2 degree of acknowledgment of the ADHD controversy (rated on a continuum,
from no acknowledgement to detailed acknowledgement/discussion, see notes to
Table 1. It is important to note here that In this rating we excluded any mention
by researchers that ADHD lacks biological markers, because this is a known
characteristic of the condition within the reigning biomedical view).
These data also included the studies’ problem statements and any recommen-
dations for practitioners. Data on parents’ concerns and experiences focused on:
The Problem with ADHD
123
1 first identification of the problem and reactions to an ADHD diagnosis;
2 views about ADHD;
3 living with an ADHD child;
4 views about professionals; and
5 attitudes about, and experiences with, medications.
These data were extracted verbatim by B.P. from each report, then summarized
iteratively by both authors. We did not attempt to ‘‘weight’’ themes and topics
observed within studies, only identified their presence in parents’ reported
comments, and noted the number of studies expressing them. Summaries on all
topics were then compared, discrepancies resolved by discussion, and conclusions
reached by considering the findings in relation to each other and to the themes raised
in the introduction.
Results
Characteristics of the studies
The 36 reports, published between 1996 and 2008, correspond to 28 studies
conducted in English-speaking Western nations (14 in US, five in Canada, five in
UK, four in Australia), and two studies conducted in India and Iran. The journals
(and one book) publishing them represent the medical, behavioral, educational, and
social science disciplines. Authors were affiliated with psychiatry (n=11 studies),
nursing, psychology (n=5 each), education (n=3), social work, health services,
pediatrics (n=2 each), and sociology, social studies, and social pharmacy (n=1
each). Authors of three studies were affiliated with more than one discipline.
689 abstracts and
publications identified
224 abstracts
and publications
assessed
26 publications
selected
Excluded on basis of format, title,
and duplication (n=465):
- duplications (n=83)
- dissertations (n=60)
- reports/editorials (n=24)
- meta analyses/book reviews (n=4)
- focus on other problems (n=294)
Excluded on basis of inclusion criteria (n=198):
- focus on understanding ADHD/comorbidity (n=57)
-focus on evaluatingscales/measures(n=40)
- focus on measuring disabilities of parents (n=25)
-focus on evaluating parental knowledge(n=25)
- focus on evaluating interventions/treatments (n=25)
-focus on evaluating medication and adherence (n=13)
-focus on ADHD identification andprevalence (n=7)
-focus on biomedical research (n=4)
-focus on parent organizations (n=2)
10 publications
added from
references
ERIC (n=218)
MEDLINE (n=243)
PsycINFO (n=175)
Social Work Abstracts (n=33)
Sociological Abstracts (n=20)
Fig. 1 Flow chart of search strategy
B. Pajo, D. Cohen
123
Table 1 Studies’ problem statements and recommended applications
Authors (year) Acknowledgment
of ADHD
Controversy
a
Theory Problem statement Recommended application
b
Studies that consider ADHD a valid disorder
Arcia and
Ferna
´ndez
(1998)
0 Little is known of Latina mothers’ schemas of ADHD and
the factors that shape them
Understand parents’ schemas about their children and
expand and modify such schemas as necessary. Do not
present parent training as parent training but as
paraprofessional training
Arcia et al.
(2004)
0 Little is known of Latina mothers’ cognitions and attitudes
toward the use of medications
Include a blind medication trial as a planned strategy with
a reluctant mother and make her a partner in the decision
of an appropriate dose. Do not titrate dose on the basis of
maternal feedback when administration has been
sporadic or only during school hours when mothers
cannot observe its effect. Do not accept at face value a
maternal report that a medication has not been effective
if a mother expects psychostimulants to change
unmedicated behavior
Arcia et al.
(2005)
0 The research on parental cognitions about children with
disruptive behaviors has been limited in quantity and in
scope
Ferna
´ndez and
Arcia (2004)
0 Reactions to perceived stigma may shape the behaviors of
mothers (especially Latina) as they cope with their
children’s behaviors and as they face possible pathways
to mental health services
Bussing and
Gary (2001)
0 How do parents’ ADHD assessment and chosen treatment
differ from professional practice guidelines?
To increase congruence with professional guidelines,
become aware of the discrepancy between practitioners’
views and parents’ lived experiences and be open to
discussions
The Problem with ADHD
123
Table 1 continued
Authors (year) Acknowledgment
of ADHD
Controversy
a
Theory Problem statement Recommended application
b
Concannon and
Tang (2005)
0 – There remains uneasiness among parents and professionals
about various aspects of the management of ADHD
Be aware of parents’ use of non-conventional therapies
and ask about them in a non-judgmental way. Doctors
should spend more time with families and give them
adequate explanations about diagnosis and options.
Teachers need more education about the effects of
ADHD
DosReis et al.
(2007)
0 No studies have 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
(It will be useful to identify patterns of parental
adaptations most predictive of effective ADHD
management)
DosReis et al.
(2003)
0 Little is known about parental perceptions of medication
Johnston and
Freeman
(1997)
0 Causal attributions for child behavior differ for parents of
children with ADHD and parents of children with no
behavior disorders
Johnston et al.
(2005)
0 Although parents influence treatment decisions, their
beliefs and attitudes have not been widely studied
Remain vigilant to the possibility of parental inaccurate
beliefs of ADHD. Ask and consider parents’ view of the
disorder as you work together in establishing treatment
plans that will meet the child’s needs and be congruent
with parents’ beliefs
Reid et al.
(1996)
0 It is important to know what parents think about whether
ADHD should be included into IDEA
Segal (1998) 0 Effective intervention in ADHD requires an understanding
of families as groups who engage in shared occupations
(Parental routines need to be changed to fit ADHD
children’s needs)
Whalen et al.
(2006)
0 Pharmacotherapy rarely normalizes the behaviors of
children with ADHD. Little is known about the
characteristics or impacts of these residual behaviors
Extend treatment targets beyond the identified child to
include parents and perhaps other family members as
well
B. Pajo, D. Cohen
123
Table 1 continued
Authors (year) Acknowledgment
of ADHD
Controversy
a
Theory Problem statement Recommended application
b
Wright (1997) 0 Optimal ADHD treatment requires detailed monitoring of
children
Cooperation between professionals in health, education,
and social services is essential so children can be offered
a range of treatments
Kendall and
Shelton (2003)
0 Y Knowledge is lacking on to how help families manage
negative sequelae of ADHD
Kendall (1998) 1 Y Little is known about how families experience the disorder
and manage their lives
Evaluate the mental health status, and recognize co-
morbid conditions, of all family members
Leslie et al.
(2007)
1 There is considerable variation in stimulant medication
use among youths with ADHD. Parental beliefs may
determine use of mental health services
Improve communication between providers and families
Olanyian et al.
(2007)
1 Racial disparities in ADHD treatment rates are large and
may be related to issues other than financial factors
Acknowledge different family and community views
about what is a behavior problem, address concerns
about medication dangers (especially drug addiction),
and keep communication lines open with families
Perry et al.
(2005)
1 Few studies have addressed how Latino families
experience ADHD
Help reduce guilt and stigma in Latino families by
providing accurate information about causes and
treatments for ADHD, explaining nurses’ roles with
parents, and discussing how to monitor treatment
effectiveness
Ghanizadeh
(2007)
2 If Iranian parents hold views about ADHD that are
inconsistent with scientific research, they may be less
likely to accept proper mental health services
Announce the availability of resources for assessing and
treating ADHD children in mass media
Blum (2007) 2 Y Mothers face difficulties in managing invisible disabilities
and dealing with school and care systems that encourage
drugs
The Problem with ADHD
123
Table 1 continued
Authors (year) Acknowledgment
of ADHD
Controversy
a
Theory Problem statement Recommended application
b
Klasen and
Goodman
(2000)
2 Clashes of perspectives between parents and GPs can
negatively impact compliance, satisfaction, and use of
health care
When assessing children, explore family explanatory
models, including views of professionals. Encourage
families to screen problems at home to differentiate
between hyperactivity and conduct disorder. Provide
simple management strategies
Wilcox et al.
(2007)
2 What are the explanatory models of parents whose
children have been diagnosed with ADHD in India?
In developing countries, use locally acceptable models of
illness to improve awareness of, and access to, child
mental health interventions
Dennis et al.
(2008)
3 The management of ADHD requires cooperation of
professionals and parents
Provide a key worker for children and their families, clear
dialogues between parents and professionals, accessible
and well-advertised support
Charach et al.
(2006)
4 What factors influence adherence to stimulants from the
perspective of parents?
Offer frequent open discussions with parents since
adherence to medications is an ongoing and evolving
process
Hansen and
Hansen (2006)
4 Y Little is known about parents’ perceptions and everyday
experiences with medications
Talk more with parents to better understand their everyday
experiences
Harborne et al.
(2004)
4 How do children and parents make sense of the different
causal models of ADHD?
Be aware of stigma families may feel and think carefully
of the long-term impact of diagnosis on parents and
children before making a diagnosis
Jackson and
Peters (2008)
4 The ADHD controversy affects parents’ decisions, with
the consequence that children may not benefit from the
most efficacious treatment (medication)
Reflect on your own thoughts and feelings about ADHD,
so as not to contribute to the skepticism and doubt facing
parents
Singh (2003)4 Y Fathersareabsentfromresearch,theclinic,andpublic
forums on ADHD
Consider fathers’ perspectives as they may have important
insights into their children’ behaviors, but resist seeing
these perspectives as evidence to support a genetic
theory of ADHD
B. Pajo, D. Cohen
123
Table 1 continued
Authors (year) Acknowledgment
of ADHD
Controversy
a
Theory Problem statement Recommended application
b
Singh (2004) 4 Y Mother-blame for ADHD is ubiquitous. Mothers might
stand to gain most from the absolution promised by
brain-blame
Singh (2005) 4 Y Bioethical analysis of issues raised by neurocognitive
enhancement such as Ritalin use is detached from real-
life decision-making
(Because the shift to long-acting stimulants reduces the
number of moral decisions that parents must make, the
resulting incremental changes in society require close
and proactive scrutiny)
Taylor et al.
(2006)
4 Y In light of the ADHD controversy, how do parents decide
whether or not to medicate their diagnosed child?
Prescribe long-acting stimulants to lessen stigma on
children, and provide multi-modal treatment for children
and resources to parents confronted with the decision to
medicate
Studies that define ADHD as a questionable entity
Carpenter and
Austin (2007)
2 Y Regardless of what they do, mothers of ADHD children
will fail to live up to the motherhood myth and will be
disabled as a result
Cohen (2006) 4 Y Children who manifest specific behaviors in school setting
are medicated, but it remains unclear how this option
arises
(In complex systems of care, implicit functions override
individual actors’ explicit intentions, i.e., in some school
settings, use of medication is a foregone conclusion for
referred children even before they are evaluated)
Malacrida
(2001)
4 Y ADHD’s ambiguity helps to study resistance to
professional surveillance and stigmatization
(Teachers are filling an uncomfortable role in the
medicalization of ADHD)
Malacrida
(2004)
4 Y ADHD’s controversy complicates the routine work of
medicalization that non-medical personnel carry out
a
Reports were rated as follows: 0, no mention of a controversy; 1, brief, non-specific, or accidental (e.g., repetition of a finding) mention of a controversy in the
conclusion of the report; 2, brief, non-specific mention of a controversy in the introduction of the report; 3, specific or detailed mention of a debate over the causes of
ADHD, itself considered a valid entity; 4, specific or detailed mention of the controversy over the existence or validity of ADHD as a clinical entity
b
Statements in parentheses are conclusions, not recommendations
The Problem with ADHD
123
Judging from authors’ first names and any descriptions accompanying the articles,
women were authors or co-authors of 30 (84 %) of the 36 reports, men of nine
(25 %). Researchers in twenty-four studies used qualitative methodology (sample
sizes ranged from five to 62), five used primarily quantitative approaches, and one,
mixed methods (sample sizes ranged from 73 to 278). Convenience sampling was
used in all but one study and control groups were present in only two studies.
In total, 1521 parents participated (67 % specified as mothers, 12 % as fathers).
Ten studies reported research grant support (five from the US National Institutes
of Health, four from other non-profit governmental or university sources, and one
from a pharmaceutical company).
ADHD constructs in relation to problem statements, recommended applications,
and theoretical perspectives
ADHD constructs in relation to problem statements
In 27 of 30 studies researchers define or assert ADHD as a valid disorder. They
define it as a ‘‘psychiatric disorder’’ (Bussing and Gary 2001; Dennis et al. 2008;
Ghanizadeh 2007; Wilcox et al. 2007), ‘‘developmental disorder’’ (Arcia and
Ferna
´ndez 1998; Ferna
´ndez and Arcia 2004; Johnston et al. 2005), ‘‘behavioral
disorder’’ (Kendall and Shelton 2003; Perry et al. 2005), ‘‘childhood disorder’
(Segal 1998; Reid et al. 1996), ‘‘neurobiological and neurodevelopmental condi-
tion’’ (Jackson and Peters 2008; Johnston and Freeman 1997), ‘‘neurodevelopmental
disorder’ (Taylor et al. 2006), ‘‘hyperactivity disorder’’ (Klasen and Goodman
2000), ‘‘invisible disability’’ (Blum 2007), ‘‘psychiatric illness’’ (Singh 2003), or,
most often, simply as attention deficit hyperactivity disorder (Charach et al. 2006;
Concannon and Tang 2005; DosReis et al. 2003; DosReis et al. 2007; Hansen and
Hansen 2006; Harborne et al. 2004; Leslie et al. 2007; Olanyian et al. 2007; Whalen
et al. 2006; Wright 1997). Among this group, however, the presentation of the
ADHD controversy varies: 12 studies omit any discussion of a controversy, 10
studies include a non-specific mention, and eight studies provide a specific or
detailed acknowledgment (Table 1).
In three of the 30 studies, authors avoid defining an ADHD condition. Rather, they
variously introduce the term as a ‘‘psychiatric categorywith cultural and historical
ambiguity’’ (Malacrida 2001, p. 141), an identification of ‘‘difference labeled’’ as
ADHD, whose existence as ‘‘some measurable objective reality is irrelevant’
(Carpenter and Austin 2007, p. 661), or speak of ‘‘the questionable validity of the
ADHD diagnosis’’ (Cohen 2006, p. 139).
In both definitional groups, we grouped the problem statements of the reports
according to their level of acknowledgment of the controversy (Table 1). The
grouping suggests that, despite some overlap, the issues of adherence to medication
treatment, differences in families’ pattern of medicating, and differences in schemas
about ADHD among parents of different cultures dominate the problem statements
in the first group of studies that have passively accepted ADHD as a valid disorder
and make no or only a brief accidental mention of the controversy. In this group,
children are seen to be at risk as parental practices deviate from the biomedical
B. Pajo, D. Cohen
123
norm (professional diagnosis and adherence to prescribed medication). When
researchers do acknowledge a definitional controversy about ADHD, problem
statements concern mother blaming, the moral implications of cognitive enhance-
ment, mothers’ and fathers’ different perspectives, clashes of perspectives between
professionals and parents, the complexity of parents’ decision-making in the light of
constrained school and care systems that encourage the use of psychopharmaceu-
ticals, and parents’ dilemmas in the midst of the controversy. Finally, within the
subgroup of researchers who challenge the biomedical definition of ADHD, the
problem statements concern the role of non-medical actors in the routine
medicalization of childhood behaviors, the difficulties of mothers to comply with
the myths of motherhood, and the observation that minors are at risk precisely
because the biomedical norm is being adhered to (children are diagnosed and
medicated for exhibiting ambiguously deviant behavior).
ADHD constructs in relation to recommended applications
As with the problem statements, recommendations or suggestions for clinicians,
teachers, and policy makers made by researchers also seem to differ according to
their stance on the nature of ADHD. As Table 1shows, only among the group of
researchers who present ADHD as a valid disorder do we find the recommendations
that clinicians engage in discussions with parents to persuade them of the worth of
the biomedical view concerning their child’s situation. This view is less prominent
among the studies where researchers acknowledge the controversy over the nature
of ADHD (studies rated 2–4). Although in this second group one study suggests that
practitioners should not reveal their own thoughts about ADHD, to avoid increasing
parents’ doubts and skepticism about medications (Jackson and Peters, 2008), this
particular study differs from the others in its group by presenting the controversy as
fueled only by the media. Other studies in this group recommend including fathers’
perspectives in the evaluation of the child’s problem (Singh 2003), using
multimodal treatment besides pharmaceutical options, making resource materials
available so parents can draw on additional assistance when confronted with the
decision to medicate their children (Taylor et al. 2006), conversing with parents to
better understand their dilemmas about medication use (Charach et al. 2006; Hansen
and Hansen 2006), and keeping in mind parents’ concerns about stigma (Harborne
et al. 2004). Finally, among the researchers who avoid defining ADHD, none makes
any explicit recommendations. Cohen (2006) concludes that in school systems, the
medication option might be a foregone conclusion even before clinicians begin to
evaluate children referred to them. The other two studies emphasize that teachers
are filling an uncomfortable position in the medicalization process (Malacrida 2001,
2004) and that women need safe spaces to speak and be heard (Carpenter and Austin
2007).
ADHD constructs in relation to theoretical perspectives
We defined a theoretical perspective as any explicit, formal statement of the point of
view of the researcher that framed a problem statement, led to a research question,
The Problem with ADHD
123
aim, or hypothesis, and assisted in interpreting the findings. We considered
‘grounded theory’’, which was mentioned in eight reports, as a technique used to
code data and group codes into concepts and not as a theory (Wasserman et al.
2009). Eight of the 30 studies (27 %) included a theoretical perspective. Twenty-
two of the 30 studies (73 %) lacked any mention of their studies’ theoretical
guidance. Relating this finding with researchers’ constructs of ADHD reveals that
only five of 27 studies that present ADHD as a valid disorder also state a theoretical
perspective (symbolic interactionism: Kendall 1998; Singh 2003,2004,2005;
Taylor et al. 2006; phenomenology: Hansen and Hansen 2006; and feminism: Blum
2007). Of note, these five studies also acknowledge the controversy over the nature
of ADHD. About three quarters of researchers of the group of 27 studies are
affiliated with medical disciplines and nursing. On the other hand, all three studies
that question ADHD’s reigning definition state a theoretical perspective: Foucaul-
dian notions of the relationships between knowledge, power, and resistance
(Malacrida 2001), constructivist analysis of medication as social and cultural
phenomenon (Cohen 2006), and feminism (Carpenter and Austin 2007). Their
authors are researchers in the social sciences.
Concerns of parents of ADHD children
First identification of the problem and reactions to the diagnosis
Six studies reported on the first identification of the child’s problem. Parents usually
seem unaware of, or unconcerned with, any problem with their child before the
school years (Blum 2007; Cohen 2006; Leslie et al. 2007; Malacrida 2001; Perry
et al. 2005). Once teachers notify them of academic difficulties, these come to the
fore. First to detect a future ADHD child, teachers recommend professional
evaluations (Cohen 2006; Ghanizadeh 2007; Malacrida 2004).
Parents’ reactions to their child being diagnosed with ADHD was explored in
depth by Taylor et al. (2006), of nine studies that reported such findings. The
reaction is a troubled one. Taylor et al. concluded that parents’ coming to terms with
the diagnosis resembled a multi-stage grieving process because their child loses
status as a ‘‘normal’’ child. Some parents, however, feel that the diagnosis offers no
useful guidance to distinguish between ADHD and normal child behavior (Arcia
and Ferna
´ndez 1998; Blum 2007; Bussing and Gary 2001; Kendall 1998), and that
there is too little time to make treatment decisions after the diagnosis (Charach et al.
2006), especially because of schools’ pressure that the child begin medication
(Cohen 2006). Some parents are afraid or embarrassed to have a diagnosed child
(Taylor et al. 2006; Wilcox et al. 2007) but some feel relief from guilt and
responsibility for their child’s behavior (Harborne et al. 2004).
Views about ADHD
Among 12 reports with relevant information on this theme, parents’s views on
ADHD varied widely. In four studies, parents explain ADHD as an internally caused
biological condition uncontrollable by the child (Harborne et al. 2004; Johnston and
B. Pajo, D. Cohen
123
Freeman 1997; Klasen and Goodman 2000; Taylor et al. 2006). Some parents report
persisting difficulties to make sense of the condition (Kendall 1998) because their
child’s behavior appears highly inconsistent (Arcia et al. 2004). Other parents
ascribe ADHD to temperament (Arcia et al. 2004) or poor parenting (Ghanizadeh
2007), refusing to consider it a bona fide illness or disorder (Wilcox et al. 2007).
Singh (2003), who interviewed mothers and fathers separately, reports large
discrepancies between their views, with fathers less willing to ascribe a medical
cause to their sons’ behaviors.
Compared with White American parents, African American, Latino, and Iranian
parents put less faith in the medical diagnosis or in ADHD as a distinct condition.
African Americans and Iranian parents see ADHD as resulting from a lack of
parental discipline (Dennis et al. 2008; Ghanizadeh 2007; Olanyian et al. 2007),
whereas Latinos view ADHD-like behavior as normal (Arcia et al. 2004). Latinos
are also concerned about the stigma of mental illness for their ADHD-diagnosed
child (Ferna
´ndez and Arcia 2004; Olanyian et al. 2007).
Living with an ADHD child
Ten reports discuss living with an ADHD child. This is portrayed as a major
challenge for parents that requires strict organizational skills, especially when
readying children for school in the morning and finishing homework after school
(Malacrida 2001; Segal 1998). Parents generally report feeling in constant chaos,
struggle, disruption, and stress (Charach et al. 2006; Dennis et al. 2008; Kendall
1998). They risk their marriages, cannot function properly (Malacrida 2001), resent
their circumstances (Taylor et al. 2006; Whalen et al. 2006). Living with an ADHD
child also means living with blame (Blum 2007; Singh 2003). Mothers, especially,
perceive themselves judged by teachers and doctors or reprimanded by society at
large because of their child’s behavior (Charach et al. 2006; Jackson and Peters
2008; Taylor et al. 2006). However, after their child was diagnosed and medicated,
mothers felt they were now judged by friends, family, and media for medicating
their child (Jackson and Peters 2008; Singh 2005; Taylor et al. 2006).
Views about teachers and physicians
All five studies exploring views about teachers depict the relationship between
parents and teachers as turbulent and mutually suspicious. Mother-teacher relation-
ships are problematic because of differing views on child behavior (Reid et al. 1996)
or medication use (Malacrida 2004). Mothers feel blamed and misunderstood by
teachers, see them as patronizing and unsympathetic (Harborne et al., 2004;
Malacrida 2004). For some mothers, the educational system failed them (Reid et al.
1996); it is highly bureaucratic and difficult to navigate, impeding the search for
solutions to their children’s school difficulties (Blum 2007).
Eleven studies described animosity of parents toward doctors and other
professionals. Parents depict professionals at times as blaming or highly judgmental
(Ferna
´ndez and Arcia 2004; Klasen and Goodman 2000; Malacrida 2001) or
disbelieving (Klasen and Goodman 2000). These difficulties are reported to start
The Problem with ADHD
123
with parents’ struggle to find an appropriate doctor for their child (Taylor et al.
2006), but no study discussed how parents actually found doctors. Studies report
that mothers have to ‘‘battle’’ the health care system to gain entry and insurance
coverage for their children, and they struggle with multiple professionals and with
‘clinical uncertainty’’ (Blum 2007; Harborne et al. 2004). Parents perceive doctors
as interested solely in prescribing medication, not caring about the child’s problem
(Charach et al. 2006; Concannon and Tang 2005; Olanyian et al. 2007), lacking
understanding of the family situation (Cohen 2006; Dennis et al. 2008), and taking
only just a few minutes to arrive at a diagnosis (Cohen 2006).
Attitudes about and experiences with medication
Eight studies reported on parents’ attitudes about medication. As the decision to
medicate nears, situations become more complex. Parents are confused and
apprehensive about psychiatric medications prescribed to their children (Arcia et al.
2004; Dennis et al. 2008; Hansen and Hansen 2006; Jackson and Peters 2008; Perry
et al. 2005; Taylor et al. 2006). They commonly express concerns about side effects
(Bussing and Gary 2001; Charach et al. 2006) and uncertainty that medication is the
answer to their child’s problem (Arcia et al. 2004; Charach et al. 2006). Many
describe the decision to medicate as akin to being caught in a web of dilemmas
(Hansen and Hansen 2006; Taylor et al. 2006).
Ambiguities and confusions, 11 studies reported, persist past the decision to use
medication. The process starts with a trial and error phase as the right dosage might
be challenging to determine and parents increase or lower the dosage until a
particular amount is found that ‘‘works’’ for their child (Dennis et al. 2008). This
phase might be followed by perceived general positive medication effects (Hansen
and Hansen 2006; Perry et al. 2005) as children under medication become calmer in
class and their concentration improves (Cohen 2006). With poor school grades
usually the main reason for seeking professional help (Arcia et al. 2004), most
parents emphasize improved academic performance as an important positive
medication effect (Arcia and Ferna
´ndez 1998; Bussing and Gary 2001; Charach
et al. 2006; Cohen 2006; Taylor et al. 2006; Wilcox et al. 2007). Some parents note
increased self-esteem (Cohen 2006; DosReis et al. 2003) and decreased aggres-
siveness (Cohen 2006). Others report that parenting stress decreased, or peace of
mind increased (Perry et al. 2005). Parents know the positive effects of medications
primarily through teachers’ reports (Arcia and Ferna
´ndez 1998, p. 345) because
many give medication only during school days, withholding it during evenings and
summers (Arcia and Ferna
´ndez 1998; Bussing and Gary 2001; Hansen and Hansen
2006; Jackson and Peters 2008; Taylor et al. 2006).
Parents also recount negative effects such as loss of appetite, stomach aches,
sleep problems (Charach et al. 2006; Hansen and Hansen 2006), sore eyes, obvious
twitches (Charach et al. 2006), a ‘‘zombie effect’’ (Jackson and Peters 2008), and
increased hyperactivity in the classroom if the child misses a dose (Cohen 2006).
These negative effects, however, are tolerated in light of present and future
academic objectives for their child (Hansen and Hansen 2006).
B. Pajo, D. Cohen
123
Discussion
The limitations of this review include a search strategy for identifying studies from
only five bibliographic databases and limited manual citation searching. Disserta-
tions were excluded and other relevant publications could have been missed. Only
one author extracted the findings related to parents’ concerns, and the studies’
authors were not contacted to check the accuracy of our summaries. The data
extraction of parents’ comments only noted the presence of particular themes in the
reports’ findings. Given the absence of random or population-based sampling of
participants in these studies, we did not attempt to determine whether specific views
represented ‘‘majority opinions’’ of the participants, but an effort was made to
capture the researchers’ own emphases in our summaries.
Parents’ concerns—if results are taken at face validity—swirl around their child’s
academic performance, their perceptions of being blamed by authority figures and
society, elevated stress of family life, and battles with the health care and school
systems. Their child’s poor academic performance appears as the trigger to evaluate,
diagnose, and seek treatment. Challenges with homework are reported as one of the
two most difficult aspects of living with an ADHD child, and improvement of
grades at school is the key measure of the effectiveness of medications and the
reason to tolerate medications’ side effects. Parents’ reactions to their children’s
actual behaviors vary from study to study (where one occasionally reads that parents
commonly cannot distinguish between supposedly normal and abnormal (ADHD)
behaviors), yet the same studies report quite consistent accounts from parents
regarding troubles with academic performance. Furthermore, parents typically
administer medications only during school days, which points to the priority of poor
academic performance over other ADHD-like behaviors. Even parents’ perceptions
that authority figures blame them for their children’s behaviors seem tied to the
academic performance issue, as these perceptions set in once a child’s school
performance falters and parents are made aware by teachers. Evidence discordant
with this last observation, however, appears in parents’ reports that they feel blamed
both before and after the ADHD diagnosis. Initially, they felt blamed by teachers
and doctors for their children’s disruptive behaviors, and in environments including
family and public spaces. Once they started medicating their children after the
diagnosis, parents felt that friends, family, and media were judging them negatively
for resorting to medication. The popularity of opposing views on ADHD and its
treatment puts parents in a bind regardless of how they approach the problem.
These findings related to academic performance provide some explanation of
why the ADHD definitional controversy endures. Is ADHD merely a label
describing disruptive children whose academic performance is lower than expected
by adults around them, or is it a bona fide disorder that may or may not affect
children’s academic performances? Findings from this review suggest that only a
thin line distinguishes academic performance problems from being diagnosed and
treated for ADHD. Some physicians admit that schools pressure them to prescribe
medications (Cohen 2006), which further blurs this dividing line. Neglecting to
examine the boundary, and why some children fall on one rather than another side
of it, might only serve to perpetuate the use of performance-enhancing drugs,
The Problem with ADHD
123
preceded by a medical diagnosis, as a remedy for children’s poor grades. In this
respect, only a few studies (conducted by researchers who did not accept a unitary
definition of ADHD) elicited accounts from parents on the role of teachers in the
process of medicalization, on whether the availability of medication drives
diagnosis or vice versa, on how children are actually diagnosed by clinicians, and
on the limited alternatives offered to parents as solutions. Moreover, with few
exceptions, researchers who defined ADHD as a valid disorder wondered how to
bring parents nearer to a biomedical understanding of the problem. Additionally, the
more open researchers were to acknowledging the ADHD controversy, the more
likely they were to consider broader and alternative viewpoints about these parents’
situations and solutions to their problem besides that of dealing with an unfortunate
medical condition remedied primarily by the use of prescription medication.
That most researchers are affiliated with health-care disciplines is one
characteristic of this body of literature. Of note, mostly women researchers con-
tributed to these studies, suggesting that knowledge on parents of ADHD children is
written by women-authors on women-mothers of ADHD children. Moreover, the
studies rely almost exclusively on inductive reasoning, because of the advantage of
qualitative inquiries in capturing personal accounts. But it limits the construction of
knowledge on a specific topic that could be accomplished by using both inductive
and deductive reasoning. The near absence of control groups prevents making
confident statements concerning the uniqueness of ADHD parents’ situations, which
presumably lies behind the purpose of investigating them from parents’ perspec-
tives. Convenience sampling also limits generalization (Eastbrooks et al. 1994) and
might have resulted in the small proportion of fathers in these studies. Overall, this
body of knowledge might reflect ‘‘insider doctrine’’ (Merton 1972)—one that can
reveal details otherwise missed by outsiders, but vulnerable to concerns about its
objectivity; insiders’ knowledge may blind researchers to aspects of their topic that
they have not taken into account.
This leads us to the observation that fewer than one third of the reviewed studies
present theoretical perspectives. The textured nature of qualitative studies allowing
for multiple interpretations, it seems crucial that researchers define their theoretical
perspective (Shek et al., 2005). Although this view is not uncontested, especially
when the researched problem relates to finding ways to intervene with a particular
population (Thyer, 2001), specifying a driving theory is considered crucial for the
continuance of science as a fallibilist enterprise resting on attempts to falsify
existing theories (Gomory 2001) and for increasing researchers’ objectivity
(Meyrick, 2006). In this body of literature, most of those who recognize the
existence of the controversy over ADHD and all of those who define ADHD as
questionable construct, also state a theoretical perspective. In contrast, researchers
who establish ADHD as a valid disorder state none. This conspicuous difference
might superficially reflect the disciplinary backgrounds of the researchers, with
medical and nursing disciplines whose practical concerns center on treating children
largely ignoring theory, and social science researchers, more or less at the margin of
treatment provision, using theory. The difference also raises possibly pertinent
questions that must presently remain speculative: Does explicitly entertaining a
theory lead an author to reconsider the idea that ADHD is a disorder? Or does an
B. Pajo, D. Cohen
123
author include a theory to justify pre-existing doubts on the ADHD construct?
Conversely, does the choice to avoid theory narrow some researchers’ vision, such
that they skip alternative constructions of the nature of ADHD? Put yet another way,
does accepting the validity of ADHD narrow the range of research questions such
that the corresponding need to explore them theoretically is also narrowed?
Because parents of ADHD children obviously live in the middle of a controversy
regarding ADHD and its management, a controversy that might be expected to
disturb laypersons at least as much as experts, we think that it should have been
recognized by all researchers in this body of work. The controversy of medicating
school children with stimulants dates back since the 1970s (Mayes and Rafalovitch
2007), to Peter Schrag and Diane Divorky’s The Myth of the Hyperactive Child
(1975) and Peter Conrad’s (1975) article on the medicalization of hyperactivity. Yet
in these reviewed studies published between 1996 and 2008, it is incidentally
mentioned once in 1998, acknowledged in two studies in 2001, and peaks between
2004 and 2007. If researchers were unaware of the controversy before beginning
their investigations—a remote possibility—they evidently encountered it in parents’
accounts. Thus, even within the prevalent biomedical framework of this literature,
the absence of recognition or acknowledgment of the controversy in two-thirds of
the studies becomes a curiosity. In fact, viewing childhood behaviors through
medical lenses narrows our ability to consider alternative explanations and can even
contribute in depersonalization of children (Graham 2010, p. 8). Meanwhile,
acknowledging the existence of a controversy need not imply a stance of the
researcher on the controversy, as the researchers’ varying definitions of the ADHD
construct attest; but failing to acknowledge it establishes ADHD as a valid disorder
‘by omission’’ and disregards a dimension of social reality which bears directly on
the object of their investigations, parents’ subjective views of their child’s ADHD.
This literature brings to light another issue: that of understanding parents of
ADHD children from different cultures. How culture and ethnicity might influence
parents’ decisions was examined only by researchers who consider ADHD as a valid
disorder, are mainly affiliated with biomedicine, and state no theoretical perspec-
tive. Within Western, post-industrial, English-speaking nations, these researchers
attempt to understand why parents from minority cultures or ethnicities are not
medicating their children who qualify for a diagnosis of ADHD made according to
the prevailing psychiatric classification system in these nations. With one exception
(Wilcox et al. 2007), the underlying assumption is, understandably, that minority
cultures and ethnicities have a model of ADHD-like behavior that differs from the
valid one. Yet the assumption seems naı
¨ve, given a widespread awareness that
depictions of psychiatric symptoms and their assumed causes stem from combi-
nations of cultural influences, historical developments, and political negotiations
(Kleinman 1988)—with the diagnosis of ADHD often held up as the exemplary
illustration (DeGrandpre 2000). Our review suggests that examining how ADHD-
like behaviors are viewed in different cultures might help to understand what, if
anything, ADHD is. Future research might benefit from looking at parents without
aiming to ‘‘fix’’ their ‘‘peculiar’’ understanding of problematic child behaviors but
rather to better describe parents’ conceptualization of these behaviors and how it
relates to wider features of family, educational, social and economic life.
The Problem with ADHD
123
Finally, in this body of literature on parents of ADHD children, understanding
why some parents do not medicate their children appears as a primary concern.
Several problem statements express researchers’ desires to explore how these
parents’ reluctance to medicate might be traceable to their culture, their ethnicity,
their lack of knowledge or resources, their fear of stigma, or their troubled relations
with teachers and doctors. We believe that this line of reasoning serves to shield the
biomedical perspective on ADHD from sustained critical analysis. Empirical
research conducted with parents of ADHD children has yet to inquire why many
parents medicate their children. Exploring reasons behind the use of medications
should be as valuable in constructing knowledge about ADHD and family life as
exploring reasons behind the avoidance of medications. We suggest that studies that
accept the reigning definition of ADHD as a disorder, rather than putting to use the
enduring ADHD controversy to maintain a critical attitude toward this key
construct, might limit one’s understanding of parents’ problems with their ADHD-
diagnosed children, narrow the relevance of findings from parental studies, and
impede the discovery and application of alternative solutions to ADHD-diagnosed
children’s difficulties.
Conclusion
Parents of children diagnosed with ADHD seem to occupy an uncomfortable
controversial position. Although their primary concerns relate to their child’s
academic performance, they find difficulties in handling the health care and
education systems, as well as their own social environment. Also researchers, who
have focused on parents of ADHD diagnosed children, have failed to question their
own biomedical view of ADHD despite the historical evidence or parents’ own
accounts. Therefore, this body of literature lacks a thorough understanding of the
problem of ADHD, mostly follows a biomedical framework, leaves aside cultural
implications, and fails to look further on reasons why some parents medicate their
children. So, the knowledge collected about these parents’ situations is limited,
primarily because of the perspectives embodied by researchers who designed these
studies.
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... However, receiving an ADHD diagnosis does not necessarily remove the risk of experiencing stigma. Parents have reported having been stigmatized, isolated and discriminated owing to their child's behaviour regardless of the diagnosis (dosReis et al. 2010;McIntyre and Hennessy 2012;Pajo and Cohen 2013;Wong et al. 2018). In addition, parents have experienced difficulties collaborating with health care and education systems and being blamed for their children's behaviours by teachers and other professionals despite their child's diagnosis (Frigerio, Montali, and Fine 2013;Pajo and Cohen 2013). ...
... Parents have reported having been stigmatized, isolated and discriminated owing to their child's behaviour regardless of the diagnosis (dosReis et al. 2010;McIntyre and Hennessy 2012;Pajo and Cohen 2013;Wong et al. 2018). In addition, parents have experienced difficulties collaborating with health care and education systems and being blamed for their children's behaviours by teachers and other professionals despite their child's diagnosis (Frigerio, Montali, and Fine 2013;Pajo and Cohen 2013). ...
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This study presents co-narrated school experiences of a young Finnish girl diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and those of her parents. The discourse analysis of the family interview focused on the discrepant ways family members gave meanings to and mobilised the ADHD categorisation while narrating their broken school trajectory. The results showed that the ADHD diagnosis was laden with the promise of the whole family being recognised differently by the school. However, this cultural promise proved disillusioning as daughter’s support needs and parents’ expertise were not recognised nor did the diagnostic category emancipate from stigmatising identities and blame. Interestingly, the parents leaned more on the diagnostic categorisation while accounting for the disillusion of these promises, whereas the daughter aimed at distancing herself from the ADHD category and behaviour characteristics related to it. The discussion concludes by comparing the viewpoints of cure and care when catering to children’s needs.
... Attention Deficit Hyperactivity Disorder (ADHD) is among the most common disorders in childhood, occurring in approximately 5 % of children (American Psychiatric Association, 2013). Despite a large body of scientific evidence attesting the neurobiological nature of ADHD (Couto, Melo-Junior & Gomes, 2010;Gallagher & Rosenblatt, 2013;Kieling, Goncalves, Tannock & Castellanos, 2008;National Health and Medical Research Council, 2012;Pajo & Cohen, 2013;Tarver, Daley & Sayal, 2014;Tripp & Wickens, 2009), the disorder has been the focus on important critical disputes, especially regarding its legitimacy, diagnostic effectiveness and therapeutic effectiveness. ...
... From the above considerations, it is important to state that diagnostic errors will invariably cause therapeutic errors. Thus the absence of physical exams that prove the presence of the disorder requires an effort by the professional in the sense of considering its comprehensiveness and heterogeneity, not only in the biological aspect -bearing in mind the quantity of structure and brain function factors that comprise it -but also in the sociocultural, cognitive emotional and behavioral aspects (Pajo & Cohen, 2013). ...
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... For over a decade, Attention-Deficit/Hyperactivity Disorder (ADHD) has been a topic of debate across disciplines (e.g., Pajo & Cohen, 2013;Visser & Jehan, 2009). This debate is framed by both 1) media accounts of the presence of mental illness in children and the necessity of expert medical intervention (Lloyd & Norris, 1999;Singh, 2002) and 2) criticism for the overdiagnosis of ADHD and the pathologization of childhood (Malacrida, 2004). ...
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Researchers have begun to inquire into the experiences of young people with ADHD, including how they define ADHD and how a diagnosis of ADHD affects them. ADHD is considered a neurodevelopmental disorder and diagnosis is frequently requested by school professionals. The purpose of this qualitative study was to examine the experiences of young people in Spain who are diagnosed with ADHD through student voice research. Using semi-structured interviews, we found that while the participants tended to reproduce the conventional psychiatric discourse on ADHD, they also produced their own explanation of ADHD and of the effects of being labelled with ADHD on their lives in school. Our results highlight both the school’s role in advocating for a diagnosis of ADHD and the lack of an adequate instructional response for students once they have been diagnosed.
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This systematic review and synthesis of qualitative research explored contextual factors relevant to non-pharmacological interventions for attention deficit hyperactivity disorder (ADHD) in schools. We conducted meta-ethnography to synthesise 34 studies, using theories of stigma to further develop the synthesis. Studies suggested that the classroom context requiring pupils to sit still, be quiet and concentrate could trigger symptoms of ADHD, and that symptoms could then be exacerbated through informal/formal labelling and stigma, damaged self-perceptions and resulting poor relationships with staff and pupils. Influences of the school context on symptoms of ADHD were often invisible to teachers and pupils, with most attributions made to the individual pupil and/or the pupil’s family. We theorise that this ‘invisibility’ is at least partly an artefact of stigma, and that the potential for stigma for ADHD to seem ‘natural and right’ in the context of schools needs to be taken into account when planning any intervention.
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... African American parents were less willing to medicate ADHD-like behaviors compared with White parents. This observed relationship accords with findings from studies that use parents of ADHD children as their primary informants (Pajo & Cohen, 2013). The finding may also indirectly accord with repeated observations that African American children are two and 3 times less likely than their White counterparts to receive psychoactive medications (Hudson, Miller, & Kirby, 2007;Zito, Safer, Zuckerman, Gardner, & Soeken, 2005). ...
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