Piger med ADHD - Et kvalitativt studie om trivsel og diagnosticeringsproces belyst gennem forældrebesvarelser

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

Holm, Emma Kiesbye ; Ladegaard, Anna Kirstine

4. semester

Psykologi, Kandidat

2022

91

Piger med ADHD overses ofte, blandt andet fordi mange kan skjule eller “maske” deres symptomer i sociale situationer. Dette speciale adresserer et markant videnshul i samfundsvidenskaberne ved at undersøge, hvordan forældre oplever udrednings- og diagnoseprocessen for deres døtre, og hvordan ADHD påvirker pigernes trivsel. Vi bygger videre på en narrativ litteraturgennemgang fra 2021 om pigers trivsel og læring i skolen. I dette studie fokuserer vi på vejen til diagnose og på trivsel, motiveret af beskrivelser af udfordringer i det danske sundhedsvæsen (henvisning, udredning og klinisk vurdering) samt af den kliniske implementering af WHO’s ICD-11 i 2022, som ændrer kriterierne for ADHD. I ICD-systemet har ADHD indtil for nylig været benævnt Hyperkinetisk forstyrrelse. Problemformulering: Hvordan kan forældres spørgeskema-svar belyse diagnoseprocessen for piger med ADHD og forstyrrelsens betydning for deres trivsel? Metode: Med en fænomenologisk tilgang gennemførte vi et online spørgeskema i SurveyXact rettet mod forældre til piger med ADHD, med mulighed for kvalitative svar. Vi modtog svar fra 133 anonyme deltagere rekrutteret via ADHD-relaterede Facebook-grupper. Besvarelserne blev analyseret med en deskriptiv fænomenologisk analyse. Resultater: Forældre rapporterede, at ADHD-symptomer i høj grad kan påvirke pigers trivsel, og at trivslen i mange tilfælde forbedredes efter at have modtaget en diagnose. Oplevelserne med diagnoseprocessen var blandede. Positive beskrivelser fremhævede professionelle og smidige forløb, hvor forældre følte sig hørt og taget alvorligt. Negative beskrivelser pegede på lange ventetider (som i flere tilfælde blev forbundet med forværret trivsel over tid), uenigheder mellem forældre og fagpersoner om, hvorvidt og i hvilken grad symptomerne var til stede, samt en mangel på offentligt tilgængelig information til forældre til piger med ADHD. Vi afprøvede fire hypoteser. (1) Sen diagnose: 81,2 % angav diagnose i niårsalderen eller senere, hvilket er senere end gennemsnittet på tværs af køn. (2) Brug af betegnelsen “ADD”: Selvom “ADD” ikke er en ICD-10-diagnose, oplyste 62,41 % at være blevet fortalt, at deres datter havde ADD, og kun 1,5 % rapporterede den korrekte ICD-10-betegnelse Hyperkinetisk forstyrrelse. (3) Negative erfaringer: Der blev rapporteret talrige negative erfaringer, om end de ikke oversteg antallet af positive og neutrale. (4) Kontekstens betydning: Mange forældre oplevede, at symptomer varierede på tværs af sammenhænge, fx skole versus hjem. Vi konkluderer, at der er behov for mere forskning i ADHD hos piger og kvinder for at forbedre identifikation og støtte, uanset hvordan symptomer viser sig.

Girls with Attention Deficit Hyperactivity Disorder (ADHD) are often overlooked, in part because many can hide or “mask” their symptoms in social situations. This thesis addresses a major gap in social science research by examining how parents experience the diagnostic process for their daughters and how ADHD affects the girls’ wellbeing. We build on a 2021 narrative literature review about girls’ wellbeing and learning in school. In this study, we focus on the path to diagnosis and on wellbeing, motivated by reports of challenges in Denmark’s public healthcare system (referral, assessment, and clinical evaluation) and by the 2022 clinical rollout of the World Health Organization’s ICD-11, which changes ADHD criteria. In the ICD system, ADHD has until recently been labeled Hyperkinetic Disorder. Research question: How can parents’ survey responses shed light on the diagnostic process for girls with ADHD and on the disorder’s implications for their wellbeing? Method: Using a phenomenological approach, we conducted an online survey in SurveyXact for parents of girls with ADHD, allowing qualitative answers. We received responses from 133 anonymous participants recruited via ADHD-related Facebook groups. We analyzed answers using a descriptive phenomenological analysis. Findings: Parents reported that ADHD symptoms can strongly affect girls’ wellbeing, and that in many cases wellbeing improved after receiving a diagnosis. Experiences with the diagnostic process were mixed. Positive accounts described professional and efficient pathways where parents felt heard and taken seriously. Negative accounts highlighted long waiting times (sometimes linked to worsening wellbeing over time), disagreements between parents and professionals about whether and how strongly symptoms were present, and a lack of publicly available information for parents of girls with ADHD. We tested four hypotheses. (1) Later diagnosis: 81.2% reported diagnosis at age nine or older, later than the average age across genders. (2) Use of the term “ADD”: Although “ADD” is not an ICD-10 diagnosis, 62.41% said they were told their daughter had ADD, and only 1.5% reported the ICD-10 term Hyperkinetic Disorder. (3) Negative experiences: Numerous negative experiences were reported, although they did not outnumber positive and neutral accounts. (4) Context matters: Many parents observed that symptoms varied across settings, such as school versus home. We conclude that more research on ADHD in girls and women is needed to improve identification and support, regardless of how symptoms present.

[Dette resumé er omskrevet med hjælp fra AI baseret på projektets originale resumé]

ADHD ; Piger ; Trivsel ; Diagnosticering

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