1375 ADHD and girls; hearing their stories: a qualitative exploration of the experiences of girls being diagnosed with attention deficit hyperactivity disorder

Abstract

<h3>Aims</h3> <h3>Background</h3> Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder which commonly presents in childhood. It is widely recognised that there exists a significant difference in the referral and diagnostic rates between boys and girls. Current literature suggests that girls with ADHD often go unrecognised or are misdiagnosed. If left undiagnosed children with ADHD can experience long term social, academic and emotional difficulties. To date no UK study has specifically focussed on hearing from girl’s themselves in order to understand more about their experiences of living with symptoms of, or being diagnosed with, ADHD. This is essential to enhance our understanding of ADHD in girls and to improve recognition, referral rates and the diagnostic process for this vulnerable group. <h3>Objectives</h3> The objective of this qualitative study was to explore the views and feelings of the girls and their families about their experience of being diagnosed with ADHD. We aimed to explore the girls’ own perception of their difficulties, how they manifested and their impact upon their lives, to explore their experience of being referred for an assessment and of the diagnostic services involved in their care, to ascertain if there were any barriers to them receiving their diagnosis and to identify ways in which the girls and parents felt that the diagnostic process and care for girls could be improved. <h3>Methods</h3> Participants were invited to participate in the study via an advertisement broadcast across the social media platforms of nine UK ADHD charities. Semi-structured interviews were held over Microsoft Teams with participants until data saturation. The data was thematically analysed using an inductive approach. <h3>Results</h3> 14 semi-structured interviews were conducted, seven with girls aged between 6-16 years old and seven with at least one parent. Analysis of these interviews identified key themes relating to girls being referred and diagnosed, including: misconceptions about how ADHD presents in girls (within families, schools and the wider society), service design barriers and communication failures. The girls often felt misunderstood which impacted upon friendships, their wellbeing and their educational attainment. Parents frequently felt judged by professionals and wider society. Solutions for improving recognition of ADHD in girls included improving awareness within society, especially in school staff. Solutions for enhancing the diagnostic pathway included developing child-centered collaborative services and providing parents with a guide to early support services after symptom recognition, increased child-focussed ADHD education and peer support for girls. <h3>Conclusion</h3> Misconceptions about how ADHD presents in girls continue to be a significant barrier to them accessing diagnostic services and appropriate care. This alongside service design issues negatively affected their patient journey. Enhanced education for schools is essential for earlier recognition of those experiencing possible symptoms of ADHD. Consulting with girls with ADHD and their families is important as we seek to develop and commission services that improve recognition of ADHD in girls and access to services for this patient group.