Adult adhd patients’ experiences of impairment, accessing services and treatment management: a qualitative study in England

Abstract

INTRODUCTION: There is limited understanding of the health and treatment-related experiences of adults with Attention Deficit Hyperactivity Disorder in England. AIMS: To explore the experiences of adults with ADHD regarding impairment, accessing diagnostic and treatment services, and to compare experiences between patients diagnosed during adulthood and childhood. METHODS: Semi-structured face-to-face interviews were conducted with 30 adults with ADHD, recruited across England. Half of the participants were diagnosed during childhood and the remainder during adulthood. Data was analysed using Thematic Analysis and data saturation was achieved. RESULTS: Getting a diagnosis and accessing ADHD services in adulthood was an 'uphill struggle', often due to negative and sceptical attitudes towards ADHD by healthcare professionals. Many patients struggled for years with misdiagnoses of depression and anxiety, and severe difficulties accessing care and treatment caused a downward spiral into functional impairment in some. Accumulated psychosocial burden was evident as living with undiagnosed ADHD had resulted in a chronic sense of failure and missed potential in many diagnosed from late adolescence onwards. Positive adjustment was facilitated by a younger age at diagnosis. Although medication was perceived as necessary in alleviating impairment, many deemed pharmacological treatment by itself as inadequate. Additional support, especially psychological therapies/psycho-education was strongly desired, yet few patients had access to non-pharmacological treatment. CONCLUSIONS: This study suggests that the unmet needs of adults with ADHD are substantial, particularly in those diagnosed from late adolescence onwards. The findings suggest there is a wide gap between policy and practice in England.