Adult ADHD patient experiences of impairment, service provision and clinical management in England: a qualitative study

Abstract

BackgroundThere is limited evidence of the unmet needs and experiences of adults with Attention Deficit Hyperactivity Disorder (ADHD) in the published scientific literature. This study aimed to explore the experiences of adults in England with ADHD regarding access to diagnostic and treatment services, ADHD-related impairment and to compare experiences between patients diagnosed during adulthood and childhood.MethodsIn this qualitative study, 30 adults with ADHD were recruited through an ADHD charity (n = 17) and two hospital outpatient clinics for adults with ADHD in England (n = 13). Half of the participants were diagnosed with ADHD during childhood or adolescence and the remainder during adulthood. Semi-structured interviews were conducted and data was analysed using a thematic approach based on Grounded Theory principles.ResultsAnalysis revealed five core themes: ‘An uphill struggle’: the challenge of accessing services, ‘Accumulated Psychosocial Burden and the Impact of ADHD’, ‘Weighing up Costs vs. Benefits of ADHD Pharmacological Treatment’, ‘Value of Non-pharmacological Treatment’ and ‘Barriers to Treatment Adherence’. Accessing services and the challenges associated with securing a definitive diagnosis of ADHD in adulthood was an ‘uphill struggle’, often due to sceptical and negative attitudes towards ADHD by healthcare professionals. ADHD-related impairment had an overwhelmingly chaotic impact on every aspect of patients’ lives and many felt ill equipped to cope. A persistent sense of failure and missed potential from living with the impact of ADHD impairment had led to an accumulated psychosocial burden, especially among those diagnosed from late adolescence onwards. In contrast, positive adjustment was facilitated by a younger age at diagnosis. Although medication was perceived as necessary in alleviating impairment, many felt strongly that by itself, it was inadequate. Additional support in the form of psychological therapies or psycho-education was strongly desired. However, few patients had access to non-pharmacological treatment. In some, medication use was often inadequately monitored with little or no follow-up by healthcare professionals, leading to poor adherence and a sense of abandonment from the healthcare system.ConclusionThe findings suggest that the unmet needs of adults with ADHD are substantial and that there is a wide gap between policy and current practice in England.

Perspectives on Everyday Suffering among People with Adult Attention Deficit Hyperactivity Disorder and Concurrent Mental Disorders

“…Neglecting or being denied help by healthcare professionals was perceived to generate the pain of both increased anxiety and feelings of disappointment, which escalated into physical pain. As the results of other studies have shown, interviewees have stated that much of their suffering could have been avoided if they had received the diagnosis earlier [30] [31] [32]. The findings confirm that suffering can prompt feelings of alienation, both from others and from oneself.…”

Comparing patients’ perspectives of “good care” in Dutch outpatient psychiatric services with academic perspectives of patient-centred care

“…The wishes of patients ''to be listened to non-judgmentally'' and ''to pay attention to the possible change in needs'' are also described in a study of Billsborough et al (2014) on support needs during periods of mania and depression for people with bipolar disorder. The desire of adults with ADHD for more accessible and continuous care, which includes treatments not typically offered for ADHD, have also been described in the UK in a study on patients' experiences of impairment, service provision and clinical management (Matheson et al, 2013). The importance, as well as the potential problems, of a health professional acting professionally and demonstrating empathy as a person is also described by a study of Eliacin et al (2015) on the patients' understanding of shared decision making in mental health setting and Williams et al (1999) on the user perspectives on person-centeredness in social psychiatry.…”

An international clinical study of ability and disability in ADHD using the WHO-ICF framework

“…Broad variation of services was also captured in this study, ranging from health care providers and special education interventions to labour employment and social security programs. Despite the extensive impact of ADHD on individual functioning, there is still a growing demand for services that can be offered in addition to pharmacological treatments [56]. The need for non-pharmacological interventions can be explained by numerous reasons.…”