Perspectives on Educational Supports: Two Case Studies of Families with School-Aged Children with Attention-Deficit/Hyperactivity Disorder (ADHD)

Abstract

This article examines two families' experiences on the support services for their school-aged child with Attention-Defi-cit/Hyperactivity Disorder (ADHD). Families' views about the received support were examined using netnography (a form of ethnography). The research was conducted using an online survey directed to 208 families, in a closed social media platform. Thereafter, four families were interviewed. From these interviews, two families were selected for further in-depth analysis. The received set of supports were perceived differently: One set of supports was perceived as "pos-itive" and the other as "negative." According to the analysis, families' perspectives about the received support varied based on how well the student's individual needs were recognized by teachers, how much teachers knew about ADHD, whether families' perspective was heard, and whether they received adequate support in a multi-professional network.

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The Journal of the International Association of Special Education18(1) 2018 1
2018
Vol. 18, No. 1
Invitation to the
16th Biennial Conference
Magamba, Tanzania
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The Journal of the International Association of Special Education 2018 Vol. 18, No. 1

The Journal of the International Association of Special Education18(1) 2018 23
Perspectives on Educational Supports: Two Case Studies of Families with School-Aged Children with
Attention-Decit/Hyperactivity Disorder (ADHD)
Heidi Harju-Luukkainen
University of Gothenburg, Sweden
University of Jyväskylä, Finland
University of California, Los Angeles, USA
Erja Sandberg
University of Helsinki, Finland
Tiina Itkonen
California State University Channel Islands, USA
Abstract
This article examines two families’ experiences on the support services for their school-aged child with Attention-De-
cit/Hyperactivity Disorder (ADHD). Families’ views about the received support were examined using netnography (a
form of ethnography). The research was conducted using an online survey directed to 208 families, in a closed social
media platform. Thereafter, four families were interviewed. From these interviews, two families were selected for further
in-depth analysis. The received set of supports were perceived differently: One set of supports was perceived as “pos-
itive” and the other as “negative.” According to the analysis, families’ perspectives about the received support varied
based on how well the student’s individual needs were recognized by teachers, how much teachers knew about ADHD,
whether families’ perspective was heard, and whether they received adequate support in a multi-professional network.
Keywords: ADHD, case study, support measures, special education
INTRODUCTION
When children in Finland have ADHD-related symp-
toms such as inattention, hyperactivity, and impulsivity,
only approximately 50 percent of their families receive
adequate support at schools —a situation that Sand-
berg (2016) describes as alarming. Early intervention
and individually designed support structures within a
multi-professional context are outlined in legislation
(Varhaiskasvatuslaki 1973/2015; Sosiaalihuoltolaki
2014; Perusopetuslaki 2010; Opetus-ja kulttuuriminis-
teriö 2014). Also, a national professional medical policy
manual emphasizes early intervention immediately after
the onset of symptoms (Moilanen et al., 2013). Fam-
ilies’ opinions about the support they should receive,
especially when their child receives early childhood
education and has ADHD symptoms, are in line with
what policy documents highlight as central (Sandberg
& Harju-Luukkainen, 2017). From these premises, the
researchers/authors of this paper took a closer look at
two families in which a school-aged child experiences
ADHD symptoms. These families were chosen from
among 208 families that took part in a netnography
research conducted in 2012–2014 in Finland. Netnog-
raphy is a form of ethnographical research, but it is
conducted online. This online research was conducted
in a closed social media platform where the families
answered a questionnaire and were interviewed later on.
All families that took part in this research have a family
member (child) that experiences ADHD symptoms and
has a ADHD diagnosis. Families were asked to examine
their past experiences with teachers and other special-
ists.
From these premises, the authors of this paper formu-
lated two guiding questions, using existing data from
the aforementioned larger interview set: (1) How do
families perceive the educational supports they re-
ceive?; and (2) Are there common themes that may ex-
plain the perception of supports received? The authors
had two aims. First, they attempted to highlight the
voices of families with ADHD-symptomatic children,
in how the families experience school supports. This
aim is important, especially since there is very little
previous research about families’ views of the support
received at school. The second aim of this study was

The Journal of the International Association of Special Education 2018 18(1)
24
to give new information about families’ perspective to
teachers and others working with families in a school
context.
Literature Review
ADHD is a multifaceted disorder, the existence of
which is still controversial (Tait, 2014). However,
the Nordic countries take a medical approach toward
ADHD, where it is seen as dysfunctional brain activi-
ty (American Psychiatric Association, 2013; Koski &
Leppämäki, 2013). According to Smith et al. (2008),
the medical approach identies mild functional and
anatomical differences in the central nervous system
as crucial. The important differences, according to
Närhi & Klenberg (2010), can be found in inefciently
working parts of the brain that regulate concentration
and activation. This naturally appears very differently
in different children. Children with ADHD often appear
highly impulsive, have difculties concentrating, ex-
hibit problem behaviors, and experience difculties in
controlling their lives and actions (Terveyden ja hyvin-
voinnin laitos, 2012). According to Penttilä, Rintahaka,
and Kaltiala-Heino (2011), social abilities might also be
underdeveloped. However, according to Home (2008),
persons diagnosed with ADHD can be also seen as
creative and intelligent if performance restrictions are
taken into consideration.
Internationally, ADHD is a common disorder (Kvist,
Nielsen, & Simonsen, 2013; McGough et al., 2009).
Further, Ruoho and Ihatsu (2012) argue that it is one
of the most common chronically longitudinal condi-
tions. In Finland, according to Voutilainen, Sourander,
and Lundström (2004), approximately 3-6 percent of
children experience ADHD symptoms. Even though
the symptoms change over time (e.g., hyperactivity and
motoric restlessness decreases), difculties in steering
attention and action remain throughout life. ADHD is
also three times more common among boys than girls
(Smith et al., 2009). According to Kvist, Nielsen, &
Simonsen, (2013), this is linked to genetic factors of
the disorder. According to Voutilainen et al. (2004),
ADHD-associated challenges can be found in families
as well as stretching over generations. Further, Suom-
inen (2006) argues that the genetic factor in this is
approximately 70–95 percent. Therefore, the disorder
often affects not only the individual but also the entire
family across their life spans.
Regular treatment for ADHD is a combination of
pharmacological and psychological or pedagogical
approaches. However, parents often have reservations
about a medical approach for controlling behavior, es-
pecially when it comes to young children (Berger, Dor,
Nevo, & Goldzweig, 2008). Therefore, there is, espe-
cially from parents’ viewpoint, a need for non-pharma-
cological treatments.
Teacher-Based Interventions
Behavior associated with ADHD is often noticeable
in classrooms and in other social situations because
teachers and society expect children to behave in ways
that might be difcult for children with ADHD (see,
for example, Salmelainen, 2002). Early recognition
of symptoms, as well as school-based intervention, is
important, especially when the diagnosis is associated
later on in life with problematic lifecycle development.
However, teachers have an important role when
children are diagnosed during their schooling years.
Teacher observations about the child’s functioning in
different situations are used in classication and in
different treatment decisions (Vereb & DiPerna, 2004;
Moilanen et al., 2013). It is therefore often up to the
teacher to decide how a child with ADHD is provided
assistance, how information about the child is forward-
ed to other professionals, and most importantly, how the
adults in school treat the child (Itkonen & Jahnukainen,
2010). According to Anderson, Watt, Noble, and Shan-
ley (2012), teachers have reasonable knowledge of the
characteristics and causes of ADHD, but only limited
knowledge of ADHD treatments. Further, Ohan, Cormi-
er, Hepp, Visser, and Strain (2008) suggest that teachers
who lack of knowledge about ADHD may overlook
the behavioral signs and therefore the child does not
receive needed assistance. Also, teachers’ attitudes
towards ADHD might affect their choice of a teaching
approach (Westwood, 1996). Therefore, according to
Anderson et al. (2012), it is important that pre-service
as well as in-service teachers have a sound knowledge
of ADHD and maintain a positive attitude towards
teaching children with ADHD.
METHODS
Research conducted on the Internet has become im-
portant in modern societies where people spend much
of their free time online, connected to different social
networks. It is therefore possible to collect data and
conduct different types of research utilizing social me-
dia (Laaksonen, Matikainen, & Tikka, 2013). According
to Hine (2000), computer-mediated communication
can enrich research data collection, especially when
done regardless of space and time. All this has moved
ethnographic methods to new environments, such as the
Internet and the social networks within it.

The Journal of the International Association of Special Education18(1) 2018 25
Netnography that is conducted online has several
parallel terms (Isomäki, Lappi, & Silvennoinen, 2013).
Online ethnography — also called netnography — is
a form of ethnographic research conducted online in
different social media networks, with the help of a com-
puter (Kozinets, 2010). Here the researcher can be seen
either as an observer or as an active operator (Poynter,
2010; Hine, 2000) depending on the role taken. How-
ever, Isomäki et al. (2013) point out that netnographic
research includes an inductive approach when it comes
to data analysis. This means that larger data sets are
broken into smaller components and these compo-
nents are compared on micro and macro levels, as well
among each other. In netnography, like in ethnography
in general, the data are studied in different stages. How-
ever, also combining these two approaches in research
is common (Kozinets, 2010). According to Sumiala and
Tikka (2013), this is adequate, due to the fact that the
research methods have similar features even though the
data are gathered in different environments.
The research for this paper was conducted online,
in a national interest or support group, which can be
found on a social media network called Facebook.
Facebook is the most widely used social media plat-
form, measured by the number of users (Herkman and
Vainikka, 2012). Research participants were part of a
closed social interest group for adults and/or children
with ADHD (often members of the same family) whom
have different neuropsychiatric symptoms or neuro-
logical diagnosis connected to ADHD. Participants
used their own names and pictures, which, according to
Hamari (2011), is appreciated in today’s social media
platforms. Therefore, the research participants were
not anonymous and did not use aliases (Laukkanen,
2010). During 2012–2014, data were gathered us-
ing nine different surveys, out of which four families
were interviewed in greater depth. The entire data set
consisted of people from different age groups, family
constellations, educational backgrounds, and regions
of Finland. Demographics (e.g., socioeconomic status,
education, work status, age) were compared with Finn-
ish nationwide statistics. According to these statistics,
research participants represented the variations of a
typical Finnish family’s background (see Sandberg,
2016). Two families were then selected from this larger
data set to maximize variation among the variables
of interest, perspectives on the received support in a
school context, and themes that may explain variation.
The families’ experiences were very different, and data
from both the questionnaire and interviews were used
to examine variables that could explain the perceived
quality of support. The unit of this analysis was the
family and therefore, besides individual experiences,
the family context where these experiences originated
was also taken into account.
University of Helsinki, Faculty of Behavioral Sci-
ences reviewed the proposal and granted permission
for this research. In terms of ethical considerations, the
study was committed into adhering to both national and
international guidelines on research ethics, including
those set by the Finnish National Advisory Board on
Research Ethics (Finnish Advisory Board on Research
Ethics, 2002), with special considerations to research
with young children and families.
The starting point for this ethnographic research was
the need to collect individual experiences of social
support services towards families with ADHD. These
experiences were collected over the course of three
years and with nine different questionnaires. The fam-
ilies were also interviewed. In this empirical research,
the families’ experiences were put into focus. How-
ever, it is important to note that individuals described
reality from personal standpoints, in a family context,
often from childhood to adulthood, and often even over
several decades (Laine, 2001). Participants wanted
to express their own perspectives and be understood
when balancing between symptoms, label, shame,
and getting support (Korkeamäki, Haarni, & Seppälä,
2010). According to different themes emerging from
the data, some families were interviewed further to
reveal case types. The families could choose whether to
participate in the interview, how many family members
might participate, as well as if adults and children were
interviewed separately. This research used qualitative
data from questionnaires and interview data. The data
were organized into themes and different classes for
workability. Questionnaires give in-depth information
of the phenomenon and the interviews complement this
picture. The interview material was content analyzed
to reveal further the experiences of individuals and
families.
Case Study Families
In this study two families were chosen for in-depth
analysis. Each family consisted of a mother and son.
The mothers had similar educational backgrounds. One
family lived in a town and the other in a more urban (in
a Finnish context) environment.
The rst case consisted of two persons, a single moth-
er (31 years old) and a son. The parents were divorced
and the mother and son lived in a town of approximate-
ly 20,000 inhabitants. The mother felt she could support

The Journal of the International Association of Special Education 2018 18(1)
26
her son properly. The mother had a college degree and
worked in a factory. She herself did not experience any
ADHD symptoms. The father was experiencing severe
ADHD symptoms, but was not interested in getting a
diagnosis. His mother and uncle, in turn, were diag-
nosed with ADHD.
The second case also consisted of a single mother
and a son. The mother was 42 years old, had never been
married, and the family lived in a city of approximately
100,000 people. The mother had a college degree, but
had been unable to work for several years (every now
and then in rehabilitation, but not at work) because of
her own ADHD symptoms and other problems. These
problems prevented the mother from supporting her
son.
RESULTS
Four themes emerged from the data regarding deter-
minants of the perceived supports: (1) how the child’s
needs were recognized and addressed at school; (2)
whether the teacher knew about ADHD; (3) whether
the cooperation with families was working; and (4)
whether the support was received in a multi-profes-
sional network. These family perceptions are consistent
with the quality indicators outlined in the Finnish policy
documents about educational supports for children with
ADHD.
Recognition of Individual Needs
In the rst, more ”positive” case, the custodial parent
described how crucial it had been for the child’s learn-
ing that all teachers had good assessment skills in
classroom situations and that the teacher could use that
information and combine it with individual pedagogical
solutions.
We have had really good teachers and other school
personnel. The basic knowledge [of ADHD] has
been good and they have been able to assess differ-
ent situations and what type of support is needed.
For example, the teachers have, alongside with their
teaching, supported the boy in concentration and
have controlled him. I have no other hopes; they
have done more than enough.
In the second, more ”negative” case, the teachers did
not recognize the student’s needs, and even though the
needs had been written down in an ofcial document,
the child did not receive adequate support. This parent
tried to ght for the child’s rights for individualized
support, which the family did not receive.
The student’s emotional breakouts were not recog-
nized at the school and even though they were writ-
ten down [into an individualized education plan],
the student did not receive support. When I said, ‘I
am not interested in your resource problems; when
a child has a decision about individualized educa-
tion, the school must follow it,’ the principle said,
‘no can do; we have no resources.’ And while the
student did not need any support in learning, he has
an individualized education plan in mathematics
and English. The student would need [support] in
transitional situations and in social relationships
precisely. The student cannot control his power and
he is...
The authors labeled the rst case as “positive”—the
child’s needs were recognized and met — and the
second case as “negative,” because the teacher did not
recognize or address symptoms, or provide accommo-
dations.
Teachers’ Knowledge
In the “positive” case, the teachers had previous
knowledge and interest in nding out more information
about ADHD. Also, families’ knowledge about how to
support their child was used at school.
We are really happy that the teachers have been
interested and had information about ADHD. We
have actively given out information and instructions
on how to work with the student and which support
measures and tools might be useful in teaching and
in classroom situations. [The student] got all the
help and support that was available. We have been
really happy with the teachers during the [student’s]
entire educational path.
In the “negative” case, teachers did not recognize or
understand children with ADHD. The environment was
not organized to support the child and there were not
enough adults available for the child.
In general education, they had no idea about these
kinds of things, none whatsoever. The classroom
teacher either did not recognize ADHD or did not
know how to anticipate different situations. One
conict was about a ridiculous thing like a drawing
that [the student] did not want to give to a stranger,
and the classroom teacher would not give up on the
matter. After that the student’s behavior changed;
he did not want to go to school. It was totally dis-
turbing and then [we] started getting messages, that
this did not work... that the school couldn’t handle

The Journal of the International Association of Special Education18(1) 2018 27
[the student]. The student could not cope with the
school because they do not have enough assistant
teachers and adults to anticipate situations. [Stu-
dents] are on their own too much, so there are no
adults supervising.
Collaboration with Families
In the “positive” case, the teacher engaged in active
collaboration and the family was given information
about the student’s progress. Also, the decisions con-
cerning education were done in cooperation with the
family for the benet of the child.
The support that the school and teacher offer has
been active. With the teacher, we follow the [stu-
dent’s] learning all the time. During the spring, we
make a mutual decision about how to progress the
next fall. I think the cooperation is good and done
for the benet of the child.
In the “negative” case, there was little or no cooper-
ation with the family. Decisions were made without par-
ent involvement or without even informing the parents.
According to the parent, this affected the children’s
learning and wellbeing.
It went like that in the old special school. There
were students with dysphasia and then there were
the regular education classes. Therefore, these 10
boys are on socio-emotional classes. They were
transferred with one week’s notice to a completely
different school that had 750 students. I was not
told, the teachers were not prepared, the receiv-
ing school was not prepared, the entire building
was new… in one week! Then this package fell to
pieces. There were 10 students in that class. No one
knew anything about anything. The boys... they just
broke down. When that palette (a Finnish saying)
fell to pieces in 2012, then the classroom’s rst
rule became not to kill which means that anything
just went. They tried to keep everything together to
avoid violence and so on...
Multi-Disciplinary Team and Support
In the “positive” case, the student’s matters were dis-
cussed regularly in a multiprofessional network and the
parents had the opportunity to be part of that discussion
and plan support services and accommodations. This
was in accordance with Finnish policy documents on
supporting students with ADHD.
Once per term there was a meeting in which all
of the people working around the child attended
and they were in contact when needed. We had the
opportunity to take part as well. [Student] also saw
a special education teacher. It was more like dis-
cussions about cooperation and how to work with
school and teachers smoothly.
In the “negative” case, the documents that the law re-
quires were not completed, and the schools were unable
to work together. Also, the family felt that professionals
working around the child were changing all the time.
The family felt like they were the only people with
accurate, up-to-date information.
At the previous school they had not done any ped-
agogical investigations. All of these [were not done].
This makes me annoyed, that I as a parent should know
and be capable. Schools can’t even cooperate with one
and another. No one was coordinating the big picture.
We had the doctors changed and the therapists and
everyone. Therefore, the information was forwarded
through me, but still the papers were not forwarded and
there were no pedagogical investigations.
DISCUSSION
ADHD is a multifaceted disorder, the existence of
which is still controversial (Tait, 2014). Despite this,
ADHD is internationally recognized as a common dis-
order (Kvist, Nielsen, & Simonsen, 2013; McGough et
al., 2009).1 Further, Ruoho and Ihatsu (2012) argue that
it is one of the most common chronically longitudinal
disorders and in Finland, according to Voutilainen et al.
(2004), approximately 3–6 percent of children experi-
ence ADHD symptoms. This means that there is likely a
child with ADHD in every classroom.
In this article, the authors examined two families’
views on received support for their child with ADHD
symptoms within a school context. This was done using
the method of netnography (a form of ethnography,
conducted online). Out of 208 families who took part in
a larger research project, two families were selected for
further analysis in the present study. The two families
1 In the United States, ADHD qualies for special education services. It was added to regulations in 1999 (but not in the statute itself), after a
decade of political debate on whether it is a legitimate condition and should be added to the legislation (Itkonen, 2009). ADHD is not an eligibility
category in and of itself, but falls under “other health impaired.”

The Journal of the International Association of Special Education 2018 18(1)
28
presented similar demographics and backgrounds. The
results suggest that in these two cases, four themes
or variables explained the extent to which the family
perceived the received educational supports as positive
or negative. Those were the recognition of student’s in-
dividual needs; teacher knowledge of ADHD; perceived
level of being heard; and level of collaboration within a
multi-professional team. All of these common concepts
were interrelated and not mutually exclusive.
In the Finnish national medical policy documents
about ADHD for professionals, early intervention
immediately after the symptoms have appeared is
emphasized (Moilanen et al., 2013). A teacher cannot
recognize the symptoms of children with ADHD if the
teacher has no previous knowledge or understanding
of ADHD. According to Ohan et al. (2008), teachers
who lack knowledge about ADHD may overlook the
behavioral signs and therefore the child may not get the
needed support. In the present study, the mother in the
more positive case experienced a school environment
that recognized the symptoms and provided support
measures that were individually designed for her child’s
needs. In the more negative case, this did not happen.
One reason for this type of differences might be the
teacher’s level of knowledge. Another other might be
the attitude toward children with ADHD. According
to Westwood (1996), teacher attitudes towards ADHD
might affect their choice of a teaching approach, which
again might lead to different learning and behavior-
al outcomes. Therefore, according to Anderson et
al. (2012), it is important that teachers have a sound
knowledge of ADHD and maintain positive attitudes
towards teaching children with ADHD. The Finnish
policy documents emphasize early intervention and per-
sonally designed support structures within a multi-pro-
fessional network (Varhaiskasvatuslaki, 1973/2015;
Sosiaalihuoltolaki, 2014). In this study, families expe-
rienced the multi-professional network very differently.
The family’s role is central in the network and informa-
tion must ow in both directions.
Nevertheless, teachers have an important role in
school environments for children with ADHD. It is
often up to the teacher to decide how a child with
ADHD gets support, how information about the child is
forwarded, and most importantly, how adults at school
interact with the child. Previous studies have found that
teachers may have reasonable knowledge of ADHD,
but limited knowledge about ADHD treatments (Ander-
son et al., 2012). Also, according to Sandberg (2016),
approximately only 50 percent of families received the
right kind of support. Data from previous research and
the present study imply that teacher education programs
in Finland should inform teacher candidates about
ADHD on all levels of education.
Results of this study suggest that families can have
very different experiences in receiving support in the
school context. From a family perspective, a successful
educational experience depends on teacher knowledge
and ability to provide accommodations, school-home
communication, and information ow. This suggests
that besides receiving pedagogical training on educating
students with ADHD, teacher candidates and in-service
teachers should be trained in collaboration and active
communication in a multiprofessional network.
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