These findings strongly suggest that, on an international scale, the experience of ADHD in daily life is consistent, despite the socio-cultural differences that may exist between these seven countries. These adults experienced the impacts of ADHD on functioning and well being similarly across national boundaries. Participants in these focus groups felt themselves to be different from others, often from childhood, and reported that receiving a diagnosis of ADHD as adults can be accompanied by substantial difficulty. They retrospectively identifed difficulty interacting with others in childhood, and noted a great deal of difficulty in school life and with the educational process. They also believed that ADHD has impacted their lives in very significant ways, especially with regard to education and career, and their statements support clinical research conclusions that people with ADHD are prone to troubles with addictive behaviors and other activities thought to be risky or dangerous. Navigating daily life presented considerable challenges for these adults as they reported difficulties with social relationships of all types, including with work colleagues, family, friends, and acquaintances. Together, these challenges appear to contribute to psychological conflict and diminished well-being for many. Given that 42% of these adults reported other mental health conditions along with their ADHD, some caution is suggested in attributing all impairments reported solely to their ADHD. However, in general, the statements of subjects who reported other mental health conditions and the greater majority (58%) who did not report other conditions were not substantively different.
Furthermore, these adults agreed on the key presentation of symptoms of ADHD: hyperactivity, impulsivity, inattention, and disorganization without regard to their cultural and social biases. It may not be surprising that people who have been diagnosed with a condition, presumably in accordance to standardized symptom criteria, might agree on the symptoms most central to the condition itself. This is the situational background of this study, which recruited participants who had received a diagnosis of ADHD into focus groups to explore ADHD. This is also this study’s major limitation. Similarly, the fact that participants in these focus groups retrospectively identified problems in childhood also resonate with the explicit diagnostic criteria that a retrospective assessment of childhood is included in the diagnostic process. However, despite the standardized criteria of biomedicine, one might surmise that a condition that centers on observable behaviors might be experienced differently across national and cultural borders, resulting in different impairments in daily life and lifespan activities due to interpretation bias by society or culture. However, these focus groups suggest that this is not the case for these seven countries and that the burden of illness is, instead, quite similar for adults with ADHD.
Limitations for this small study include a self-selection bias by the participants. As interested volunteers for the study, they may not have been an adequate representational sample for the entire national populations of adults with ADHD. In addition, the study’s focus on the burdens of ADHD may not have captured fully the perceptions these individuals may share with regard to its positive qualities. The emphasis on illness in the focus group script was concomitant with an emphasis on debility, rather than ability. Furthermore, these methodological limitations point to the need to confirm the results quantitatively.
It should be noted that not all countries participating in this study have a medical system that relies on similar diagnostic categories, general criteria for diagnosis or the availability of ADHD medications for adults. For example, in Italy and France, ADHD is recognized primarily as a condition of childhood and commonly used medications for ADHD are not prescribed or generally available for adults. Thus the participants in the focus groups held in Italy spoke of the need to travel to other countries for both diagnosis and medicines, thus making their diagnosis experience and treatment somewhat more challenging and emotionally difficult than those of individuals in the United States, Canada, or the United Kingdom. Relatedly, health systems differences, while not explored to a great extent in these focus groups, may be the more salient difference across national boundaries than the diagnosis and experience of ADHD. In a world with global access to biomedical information and related media, coupled with international diagnostic guidelines, differences between countries may be less pronounced.
An important finding of this study centers on medication use. Among those who are prescribed and use medication for their ADHD symptoms, there appeared to be general satisfaction that the medications were efficacious and helpful to them. However, these individuals generally did not take their medications in compliance with their prescriptions, but as they saw fit based upon their interpretation of their signs and symptoms. This opens up a potential area of investigation into the impacts of adherence and non-adherence to medications for ADHD and its effects on long-term burden of illness. Further study investigating the effects of intermittent and fluctuating use of medication for ADHD symptoms in adults, conducted through both qualitative and quantitative methodologies, may lend more insight into the complexities of adult ADHD treatment. Furthermore, although not definitive, the commentaries of these respondents identified that side effects, perceived by some to be deleterious, led to a refusal of the medication itself. These patient-reported outcomes should be considered in the development of future treatment modalities, whether these treatments are pharmaceutical or behavioral.
Findings from this study suggest that additional qualitative research is needed to further elucidate socio-cultural differences across countries generally with regard to ADHD in order to better understand the context within which people experience their disease. This ethnographic research might include expert interviews with clinicians from each country, including those whose knowledge centers on ADHD and those whose practice may be more general, as well as attitudes from the lay public who do not have a diagnosis of ADHD. Parsing the role of social stigma from the symptoms themselves could be used to understand how social experiences impact the burden of illness in the case of ADHD. Focus groups segregated by the time of diagnosis (childhood or adulthood) and across multiple countries would provide additional insight into a very intriguing area of research.
In addition to ethnographic investigation, there are many other intriguing questions associated with ADHD in adults, clinical recognition, and health system contributions to the burden of illness. These include the levels of knowledge and acceptance of ADHD in adults among potentially treating practitioners, the accessibility of medical intervention and services within specific health systems, and the availability of multiple treatment medications. Within patient experience, it would also be interesting to be able to understand 1.) the relationship between the numbers of years diagnosed with ADHD and burden of illness; 2.) co-morbid mental health conditions and adherence to treatments; and 3.) feelings of social isolation and burden of illness.
Last, all of the countries selected for this study are considered “western” countries. As such, each has similar social and economic structures for education, work, and social relationships. It is not surprising, therefore, that participants in this study might have similar life stories to tell about the obstacles they faced as people with a diagnosis of ADHD. What is of importance, however, is the extent to which adults with a diagnosis of ADHD agree upon the burden of illness and general life impacts. Similar qualitative investigation into the burden of illness of ADHD in adults that includes countries outside North America and Europe would be an important contribution to this field.