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

Abstract

This is the third in a series of four cross-cultural empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF, and Children and Youth version, ICF(-CY) Core Sets for Attention-Deficit Hyperactivity Disorder (ADHD). To explore the perspectives of individuals diagnosed with ADHD, self-advocates, immediate family members and professional caregivers on relevant areas of impairment and functional abilities typical for ADHD across the lifespan as operationalized by the ICF(-CY). A qualitative study using focus group discussions or semi-structured interviews of 76 participants, divided into 16 stakeholder groups. Participants from five countries (Brazil, India, Saudi Arabia, South Africa and Sweden) were included. A deductive qualitative content analysis was conducted to extract meaningful functioning and disability concepts from verbatim material. Extracted concepts were then linked to ICF(-CY) categories by independent researchers using a standardized linking procedure. In total, 82 ICF(-CY) categories were identified, of which 32 were related to activities and participation, 25 to environmental factors, 23 to body functions and 2 to body structures. Participants also provided opinions on experienced positive sides to ADHD. A high level of energy and drive, creativity, hyper-focus, agreeableness, empathy, and willingness to assist others were the most consistently reported strengths associated with ADHD. Stakeholder perspectives highlighted the need to appraise ADHD in a broader context, extending beyond diagnostic criteria into many areas of ability and disability as well as environmental facilitators and barriers. This qualitative study, along with three other studies (comprehensive scoping review, expert survey and clinical study), will provide the scientific basis to define ICF(-CY) Core Sets for ADHD, from which assessment tools can be derived for use in clinical and research setting, as well as in health care administration.Electronic supplementary materialThe online version of this article (doi:10.1007/s00787-017-0983-1) contains supplementary material, which is available to authorized users.

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

“…This standardized system can serve to facilitate multidisciplinary assessments by enabling more efficient communication between different professionals and organizations. Corroborating our own research [15,16,41], this study identified relevant environmental factors across different chapters of the ICF-CY, highlighting the importance of taking into account all types of facilitators and barriers in the environment when conducting functional assessments related to ADHD. One of the most referenced chapters in the environmental factors component was attitudes, which might be explained by the fact that ADHD is still not fully accepted as a bona-fide medical condition among some community members [53,54].…”

“…Others emphasized the role that ADHD played in taking initiative to create new hobbies or participate in social events. Contrary to the expert survey and qualitative study [15,16], this study identified new aspects of strengths in ADHD, such as making friends and having good relationships with family members. Some participants mentioned that they were able to form meaningful social relationships with their loved ones after many years of practice and learning, while others felt that ADHD made it automatically easier for them to approach people and initiate meaningful interactions that later led to deeper social bonds.…”

“…Some participants mentioned that they were able to form meaningful social relationships with their loved ones after many years of practice and learning, while others felt that ADHD made it automatically easier for them to approach people and initiate meaningful interactions that later led to deeper social bonds. The strengths identified in the current study can, in combination with the results from the expert survey [15] and qualitative study [16], lead to future novel hypotheses for research, where the topic of ADHD-related strengths can be more comprehensively explored. Focusing on strengths in ADHD research can be beneficial for future clinical care, enabling assessments that capture the entire spectrum of functioning, including not only specific individual disabilities, but also strengths.…”

“…For the current study, an extended version of the WHO-ICF Checklist version 2.1a was used to rate functional abilities and disabilities in individuals with ADHD [see Supplementary Material]. The specificity of the checklist content was increased by including additional 30 ICF-CY categories (12 body functions; 14 activities and participation; 4 environmental factors) that were found to be important in ADHD based on the previous three preparatory studies; a comprehensive scoping review [41], an expert survey [15] and a qualitative study [16]. The checklist was divided into four parts.…”

“…In addition, ADHD is associated with an increased risk for other neurodevelopmental and psychiatric conditions [11,12], poorer quality of life [13], and premature mortality [14]. Despite these negative outcomes in individual functioning, reports also suggest that there may be specific strengths related to ADHD, such as creativity and hyperfocusing [15,16], although these have not been documented consistently by research [17,18]. Other studies have found certain personality features, such as inspiration and feelings of togetherness, to facilitate coping strategies in individuals with ADHD [19].…”