1 RAF08790 - Mr. Martin Raffaele The Faculty of Education and Social Work, The University of Sydney. An exploration of the psychosocial effects that school-age children with Child Absence Epilepsy (CAE) experience when their condition is misdiagnosed as Attention Deficit-Hyperactivity Disorder (ADHD). Abstract An exploration of the psychosocial effects that school-age children with Childhood Onset Absence Epilepsy (CAE) experience when their condition is misdiagnosed as Attention Deficit-Hyperactivity Disorder (ADHD) The purpose of this study is to provide an understanding of the psychosocial effects that school-age children with Childhood Onset Absence Epilepsy (CAE) experience when their condition is misdiagnosed as Attention Deficit-Hyperactivity Disorder (ADHD). The findings from this research will offer both data that is presently unavailable in this area of study, and also create a foundation for further research. This study is to be conducted by a researcher who has experience working with adolescents and young adults with many forms of epilepsy, including CAE, in association with Epilepsy Australia. The researcher is in contact on a monthly basis with people of many ages with epilepsy and those who are closest to them. The different experiences many of these people have suffered influenced the researcher to investigate why specific problems, such as labelling and misdiagnosis of CAE occurs. Ten participants from five family groups will take part in the research project. Each family group includes an adolescent/young adult who has experienced CAE and a parent (guardian) of this child who took care of them during the period of investigation. The adolescents and parents (guardians) will be questioned on what are the psychosocial effect they feel the diagnosis of ADHD and the later correct diagnosis of CAE played on the child at the time of diagnosis, and sequentially. As the researcher of this study also experienced CAE as an adolescent, the understanding of the condition and related seizures is possible from a perspective that has not until this
22
Embed
RAF08790 - Mr. Martin Raffaele The Faculty of Education ...Deficit-Hyperactivity Disorder (ADHD) The purpose of this study is to provide an understa nding of the psychosocial effects
This document is posted to help you gain knowledge. Please leave a comment to let me know what you think about it! Share it to your friends and learn new things together.
Transcript
1
RAF08790 - Mr. Martin Raffaele
The Faculty of Education and Social Work, The University of Sydney.
An exploration of the psychosocial effects that school-age children with Child Absence
Epilepsy (CAE) experience when their condition is misdiagnosed as
Attention Deficit-Hyperactivity Disorder (ADHD).
Abstract
An exploration of the psychosocial effects that school-age children with Childhood Onset Absence Epilepsy (CAE) experience when their condition is misdiagnosed as Attention Deficit-Hyperactivity Disorder (ADHD) The purpose of this study is to provide an understanding of the psychosocial effects that school-age children with Childhood Onset Absence Epilepsy (CAE) experience when their condition is misdiagnosed as Attention Deficit-Hyperactivity Disorder (ADHD). The findings from this research will offer both data that is presently unavailable in this area of study, and also create a foundation for further research. This study is to be conducted by a researcher who has experience working with adolescents and young adults with many forms of epilepsy, including CAE, in association with Epilepsy Australia. The researcher is in contact on a monthly basis with people of many ages with epilepsy and those who are closest to them. The different experiences many of these people have suffered influenced the researcher to investigate why specific problems, such as labelling and misdiagnosis of CAE occurs. Ten participants from five family groups will take part in the research project. Each family group includes an adolescent/young adult who has experienced CAE and a parent (guardian) of this child who took care of them during the period of investigation. The adolescents and parents (guardians) will be questioned on what are the psychosocial effect they feel the diagnosis of ADHD and the later correct diagnosis of CAE played on the child at the time of diagnosis, and sequentially. As the researcher of this study also experienced CAE as an adolescent, the understanding of the condition and related seizures is possible from a perspective that has not until this
2
point, been researched. It must be noted that the researcher understands the need to maintain an objective mind when performing this research, and if this is not maintained, the research process may become a task that is searching for data to support prior opinions. As ADHD was never a condition that the researcher was diagnosed as suffering from, this ensures bias is not a present aspect in the thesis. This structural framework can enable a researcher an opportunity to possibly offer a non-judgmental third person perspective on the study from all angles. To understand the psychosocial effects of the misdiagnosis of ADHD on the child with CAE, a research frame-work based on a dual comparison construct is required. This research is structured upon the personal reaction of two categories of five participants (Category A: Child Reaction; Category B: Parent (Guardian) Reaction) over a time frame (of four phases) based upon the personal experience of the child participants relevant to this research. The phases that are mentioned above are as follows: Phase 1: Precursor to diagnosis of ADHD, Phase 2: Diagnosis of ADHD and sequentially, Phase 3: Precursor to Diagnosis of CAE, and Phase 4: Diagnosis of CAE and sequentially. A fifth phase (Phase 5: Requirements for future changes in education) has been constructed, based on what future required changes those participating in the research feel are necessary in all facets of education, both in professional and social environments, to ensure that these problem seize to continue. The use of in-depth interviews is the interrogate structure for the gathering of data in this research project. Phenomenology, a qualitative research method will be applied as a means of attaining and analysing data. It is a process that allows the precise personal experiences of the small group of participants to be the primary source of research data; to insure that correct and justified findings are portrayed. As there is little documentation that investigates the psychosocial effects of misdiagnosis and labelling on a child with CAE, which can lead to negative stigma, an aim of the study is to offer an understanding of these experiences from an angle that to this point has not been executed. There are many published documents that discuss ADHD and how problems, such as
3
difficulties holding concentration and maintaining interest over long periods of time arise with the diagnosis, and how an ‘average child’ is affected when incorrectly diagnosed with the condition. There is little documentation that covers the effect of misdiagnosis with ADHD on a child with a neurological condition, such as epilepsy. Existing research does not explore the psychosocial effects that school-age CAE children experience when their condition is misdiagnosed as ADHD. This study will encourage the development of education planning to assist general society to correctly recognise and understand the CAE condition, and the problems that can occur when the condition is not correctly treated, due to misdiagnosis. When completed, the research will be made available to all faculties at a tertiary that deal with the education of those who will work with children in areas of teaching and medical research. The findings will assist other researches when investigating all neurological conditions and the problems that arise when misdiagnosis as a neuropsychological condition occurs.
Introduction In-depth interviews with both 5 child participants; 3 boys and 2 girls, and also with 5
parent participants; 2 men and 3 women, were conducted. The participant retrospectively
reflected on the psychosocial difficulties experienced during the period of assessment.
Participants were recruited with the assistance of Epilepsy Australia. Each interview was
recorded for the purpose of data collection, revealing the 'bigger picture' about CAE,
misdiagnosis of ADHD, and the psychosocial effects on children. The value of
incorporating child participants who have experienced psychosocial difficulties due to the
misdiagnosis of ADHD, is that they offer a first-person perspective; an understanding of
the confusion experienced by these children through each of the five stages under
investigation (see table 1.1). The value of incorporating a parent into the process of
investigation is that they can offer information that the child participants would have
difficulty doing; this includes the first phase.
4
Periodic verses reaction
Phase Phase Description Definition
1 Precursor to diagnosis of ADHD The period of time leading up to the diagnosis of ADHD, when difference in irregular behavioural actions was recognised.
2 Diagnosis of ADHD and sequentially
The time when the symptoms experienced by the child were diagnosis as ADHD and sequentially until -
3 Precursor to diagnosis of JME or TLE
The period of diagnosis with JME or TLE, when Simple Partial and Myoclonic seizures began to be experienced.
4 Diagnosis of JME or TLE and sequentially
The time when the symptoms experienced by the child were diagnosis as TLE or JME and sequentially until the time of interview.
5 Now: Interview
Discussion of the psychosocial effects experienced by the child participants as a result of misdiagnosis
Table 1.1 Process of Phase
The paper is prearranged on a progressive phase structure. As all child participants have
experienced the same diagnosis and misdiagnosis scenario through a period of phases, the
themes are the reactions reported as experienced by the participants throughout these
phases, which are analysed and compared during this process. This provides a basis for
determining whether each of the participants experienced similar effects, and whether the
earlier reactions, such as when the diagnosis of ADHD is made in Phase 2, are mirrored
when similar circumstances are encountered with the diagnosis of epilepsy in Phase 4.
The data obtained from the participants’ oral responses to the in-depth interview
questions and observational notes recorded during each interview were regarded as a
complementary source of knowledge. The analysis of data sought firstly, to understand
how the child with CAE depicted the psychosocial effects of misdiagnosis, and secondly,
5
how their parent depicted the psychosocial effects of misdiagnosis on the child
participant. Variations emerging from similarities and differences in the reactions
revealed by each pair of participants were registered throughout the process of
interviewing. Questions regarding social response in relation to this sequence of events
were asked of the participants to gain a third aspect of how the participants felt the
knowledge and attitude of social communities could also add to the psychosocial effects
of misdiagnosis.
In the task of analysis, the data was approached from two angles. The qualitative case
study research method used in this study encouraged and allowed the participants an
occasion to personally reflect on how their lived experiences of labelling has affected
them, both during and after the period of misdiagnosis, later causing stigma to occur due
to misdiagnosis. This chapter documents findings from the research and the research
procedures. Through the in-depth interview format, the open structured form of the
investigation gave a child participant with CAE and a parent from the five family groups
the opportunity to tell each child’s individual story. The power of narrative and the
healing nature of the research process continued to develop as the research advanced.
Data Analysis of Phases
Phase 1: Precursor to diagnosis of ADHD
Child reactions
During the first phase all of the child participants were unaware of what “the fuss was all
about”. They were uninformed of the fact that they were experiencing Absence Seizures
(AS) and therefore were confused by the over-attention. Their denial of the accusations
regarding events that they were unaware of experiencing, led to great frustration being
experienced by the child participants.
6
Parent reaction
Most parent participants observed CAE seizure symptoms, including staring and/or
twitching being experienced by the child participants prior to the misdiagnosis of ADHD.
Terms such as confusion, denial, frustration and fear were used by parents to explain
what was experienced when their child demonstrated irregular behavioural patterns
during this phase. One of the most common of these symptoms was staring. When
questioning the parent on the reason why they felt the child was acting in this manner at
the time, and why they were not questioning the reason for their child experiencing these
symptoms, many of the parent participants thought the child was playing a game.
Embarrassment, withdrawal and denial were the reactions that one of the parent
participants expressed when also questioned on the symptoms that her child was
demonstrating at this time. It was felt by this participant that it was due to having five
children within a ten year period that made it hard for her to be aware of any unusal
symptoms occurring.
Social reaction
Parent participants felt the reactions of the teachers of all child participants at this time
were firstly confusion and then frustration when noticing that the child participants were
not paying full attention when asked questions and given instructions. Parents felt that
reactions of a disciplinary type were enacted due to the feeling of being unable to attain
the child’s full attention and so allegations by many of these children’s teachers was that
ADHD was the reason for these actions of inattention and disrespect occurring. Most
participants felt that peers were also experiencing confusion at this time, due to a lack of
knowledge of why a child with CAE is unawarably staring for the short periods of time
while experiencing an absence seizure.
7
Participants Themes (Reactions)
Child Confusion, denial, frustration, unawareness
Parent Confusion, denial, frustration, fear
Social Teachers: confusion, frustration
Peers: confusion, aggression and bullying
Table 1.2 Phase 1: Precursor to diagnosis of ADHD
Phase 2: Reactions during Diagnosis of ADHD and sequentially
Child reaction
Withdrawal, anger and fear, due to a labelling, for example, being ‘a bad child’ were
some of the emotional reactions that many of the child participants spoke of experiencing
when diagnosed with ADHD and sequentially. They were unaware of the condition itself
and what the diagnosis indicated. Anger and fear were reactions experienced by four
child participants due to this ignorance. Loneliness was reactions that these children
spoke of experiencing. A fifth child spoke of her preference to be by herself while at
school. Although she was also aware of the isolation and bullying that accompanied this
process of labelling, her means of coping was to remove herself as much as possible from
all social contact. The child's physical reactions at this point of the interview were by no
means accompanied with anger and anguish.
Parent reaction
Many of the parent participants felt their child was experiencing difficulties in their
behaviour patterns at times, not because their child had ADHD, but because of incorrect
treatment in the classroom environment. Reactions of over-protection, denial, offence and
anguish were those most parents in this study experienced when the diagnosis of ADHD
was given. Negativity, fear and aggression were reactions that many child participants
spoke of their parents expressing during this phase. The refusal to accept the diagnosis
and fear were also reactions that some parents spoke of experiencing at the beginning of
this phase.
8
Social reaction
Difficulty maintaining peer relationships continued to be a problem for most child
participants, resulting in reactions of withdrawal and denial experienced for most during
this phase. Due to the increasing salience towards the condition of ADHD at this time,
one of the child participants spoke of his peers treating him with respect and at times
jealously during this phase as a result of the amount of extra attention he was receiving in
the classroom environment. Acceptance and a rise in self-confidence and self-esteem
were reactions that only this child participant spoke of experiencing. He spoke of fellow
students wishing they had also been diagnosed with ADHD and apparently a couple of
them tried to convince their parents that they also had ADHD. A partent participant spoke
of her child having little social contact outside of the family environment. She seemed
unaware of whether this environment had a negative or positive influence on how her
child was affected psychosocially.
One of the parent participants seemed quite relaxed when discussing the reaction of
school teachers, being a teacher herself. In contrast, both oral and physical aggression
was a reaction that a father participant expressed when discussing social reaction. He
spoke of uncalled for judgment on the part of friends and extended family when the
diagnosis of ADHD was given. Many believed that teachers “overstepped the line” by
making allegations that their child was experiencing ADHD.