Girls with ADHD - A qualitative study about well-being and the diagnostic process elucidated through parental survey responses - PhDData

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Girls with ADHD – A qualitative study about well-being and the diagnostic process elucidated through parental survey responses

The thesis was published by , in January 2022, Aalborg University.

Abstract:

This Master’s thesis deals with the topic of Attention Deficit Hyperactivity Disorderin girls and seeks to shed light upon a research area within the social sciences whichis severely lacking. There are reasons to believe that many girls and women who haveADHD go unnoticed in schools and other systems of society; And that they are therebypotentially underrepresented in statistics, underdiagnosed and to some degreemisdiagnosed with other disorders due to their effective masking of ADHD-relatedsymptoms in social situations. We have previously (in 2021) produced a narrativeliterature review focusing on well-being and learning in school-settings in regard togirls with ADHD and based on this we find it relevant and necessary to furtherinvestigate this research area; This time focusing on the diagnostic process related toand the well-being of girls with ADHD as experienced and described by their parents.Our interest in the diagnostic process stems from articles which point to problemswithin the public healthcare system in Denmark in terms of the processes related tothe referral, examination, and clinical assessment of mental disorders. Diagnoses anddiagnostic processes are also highly topical subjects due to the forthcoming clinicalimplementations of the ICD-11 diagnostic manual from the World HealthOrganization in the year of 2022 which includes changes to the diagnostic criteria ofthe disorder internationally known as ADHD but until recently classified asHyperkinetic Disorder within the ICD-system. These points of interest have inspiredthe following problem formulation: How can parental survey responses elucidate thediagnostic process in regards to ADHD in girls as well as the implications of thedisorder in terms of their well-being?Taking a phenomenological approach, we have produced and conducted an onlinesurvey addressed to parents of girls with ADHD using SurveyXact, providing theparticipants with the option of providing qualitative answers to the survey questions.The survey responses from 133 anonymous participants reached through ADHDrelatedFacebook groups have been analyzed using the method of a descriptivephenomenological analysis. Our general conclusions are that symptoms of ADHD cangreatly affect the well-being of girls and that in many cases the poor well-being of thegirls in question was improved after receiving an ADHD diagnosis. Also, that thediagnostic process was described by the participants in both negative, positive andneutral terms. Among descriptions of positive experiences, participants described theprocess as professional and expedient and that they as parents felt heard and takenseriously. Among negative descriptions related to the diagnostic process, participantsdescribed long waiting time in the public health care system (which in several casesaffected the well-being of the girls negatively as their well-being worsened with time),disagreements between parents and professionals as to the presence or degree of theparticipants’ daughters’ symptoms as well as descriptions of feeling that there is a lackof available public information about being a parent of a girl with ADHD.Prior to producing the survey, we produced four hypotheses. The first hypothesis wasthat we expected to see relatively late ages of diagnosis of ADHD among theparticipants’ daughters compared to the average age of diagnosis related to ADHD inboys. In fact, 81.2 % of the participants reported that their daughters were diagnosedat the age of nine years or older, which is later than the average age of diagnosis acrossgenders. The second hypothesis was that we expected many examples of girls being“diagnosed” with ADD, i.e., Attention Deficit Disorder, which is in fact not possibleusing the ICD-10 diagnostic manual. However, 62.41 % of the participants reportedthat they had been told that their daughter had been given the diagnosis of ADD andonly 1.5 % reported that their daughters had been diagnosed with HyperkineticDisorder, which is the correct diagnostic term using the ICD-10 diagnostic manual.The third hypothesis was that we expected descriptions of negative experiences anddifficulties related to the diagnostic process. Although the number of negativeresponses did not exceed the number of positive and neutral responses, we canconclude that we did receive numerous negative responses from the participantsrelated to the process of receiving a diagnosis for their daughters. The fourthhypothesis was that we expected descriptions of the manifestation of ADHDsymptomsvarying between different contexts such as in school vs. at home. We canconclude that the participants reported to a great extent that they have experiencedvariations in their daughter’s symptoms of ADHD depending on the context andsituation.Further research is needed regarding ADHD in girls and women as well as in generaland we have presented ideas as to what said research may focus on. We hope thatfurther research may provide information that can contribute to better opportunities ofidentifying and helping people with Attention Deficit Hyperactivity Disorder howevertheir symptoms may present themselves.



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