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

An international qualitative study of ability and disability in ADHD using the WHO‑ICF framework Soheil Mahdi 0 1 2 3 4 5 6 7 8 9 Marisa Viljoen 0 1 2 3 4 5 6 7 8 9 Rafael Massuti 0 1 2 3 4 5 6 7 8 9 Melissa Selb 0 1 2 3 4 5 6 7 8 9 Omar Almodayfer 0 1 2 3 4 5 6 7 8 9 Sunil Karande 0 1 2 3 4 5 6 7 8 9 Petrus J. de Vries 0 1 2 3 4 5 6 7 8 9 Luis Rohde 0 1 2 3 4 5 6 7 8 9 Sven Bölte 0 1 2 3 4 5 6 7 8 9 0 Division of Child and Adolescent Psychiatry, University of Cape Town , Cape Town , South Africa 1 Center for Psychiatry Research, Stockholm County Council , Stockholm , Sweden 2 Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Paediatric Neuropsychiatry Unit, Karolinska Institutet , Stockholm , Sweden 3 Child and Adolescent Psychiatry, Stockholm County Council , Stockholm , Sweden 4 Learning Disability Clinic, Department of Paediatrics , Seth G.S. Medical College and K.E.M Hospital , Mumbai , India 5 Mental Health Department , KAMC-R, MNGHA, Riyadh , Saudi Arabia 6 Swiss Paraplegic Research , Nottwil , Switzerland 7 ICF Research Branch, a cooperation partner within the WHO Collaborating Centre for the Family of International Classifications in Germany (at DIMDI) , Nottwil , Switzerland 8 National Institute of Development Psychiatry for Children and Adolescents , São Paulo , Brazil 9 ADHD Outpatient Program, Hospital de Clínicas de Porto Alegre, Federal University of Rio Grande do Sul , Porto Alegre , Brazil 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, selfadvocates, 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 - Attention-Deficit Hyperactivity Disorder (ADHD) is a neurodevelopmental disorder, affecting 3–7% of children and adults worldwide [1–4]. Besides the core behavioural symptoms of inattention, hyperactivity and impulsivity [5], the definition of ADHD includes related interference with social, educational or occupational functioning, and an associated reduced quality of life across the lifespan [6–10]. Neurodevelopmental and psychiatric comorbidity is common in ADHD [11], further contributing to functional impairment [12]. Interestingly, ADHD has also been reported to include specific strengths, such as creativity, hyper-focusing and high levels of energy [13], although these have not been consistently supported by other research findings [14, 15]. While ADHD typically causes impairment across different life domains, the degree and profile of its individual impact might differ significantly. Therefore, the availability of internationally accepted, standardized classification tools for individual assessment of functional ability and disability in those living with ADHD may be helpful in clinical, research and health care administration settings. In 2001, the World Health Organization (WHO) released the International Classification of Functioning, Disability and Health (ICF) with the aim to provide a comprehensive and universal framework to describe different aspects of functioning and disability for all health-related conditions [16]. In 2007, the Children and Youth version of the ICF, the ICF(-CY), was published, designed specifically to capture the functional ab (...truncated)