Mahdi Soheil, Viljoen Marisa, Massuti Rafael, Selb Melissa, Almodayfer Omar, Karande Sunil, de Vries Petrus J, Rohde Luis, Bölte Sven
Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Paediatric Neuropsychiatry Unit, Karolinska Institutet, Stockholm, Sweden.
Center for Psychiatry Research, Stockholm County Council, Stockholm, Sweden.
Eur Child Adolesc Psychiatry. 2017 Oct;26(10):1219-1231. doi: 10.1007/s00787-017-0983-1. Epub 2017 Mar 28.
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.
这是四项跨文化实证研究系列中的第三项,旨在制定注意力缺陷多动障碍(ADHD)的《国际功能、残疾和健康分类》(ICF)以及儿童和青少年版(ICF-CY)核心集。以探讨被诊断为ADHD的个体、自我倡导者、直系家庭成员和专业护理人员对ICF(-CY)所界定的ADHD在整个生命周期中相关损伤领域和典型功能能力的看法。采用焦点小组讨论或半结构化访谈的定性研究,共有76名参与者,分为16个利益相关者群体。纳入了来自五个国家(巴西、印度、沙特阿拉伯、南非和瑞典)的参与者。进行了演绎性定性内容分析,从逐字记录材料中提取有意义的功能和残疾概念。然后,独立研究人员使用标准化的链接程序将提取的概念与ICF(-CY)类别相联系。总共确定了82个ICF(-CY)类别,其中32个与活动和参与有关,25个与环境因素有关,23个与身体功能有关,2个与身体结构有关。参与者还对ADHD的积极方面发表了意见。精力充沛、有动力、创造力、高度专注、随和、有同理心以及愿意帮助他人是与ADHD最常被提及的优势。利益相关者的观点强调了在更广泛的背景下评估ADHD的必要性,这不仅限于诊断标准范围,还应扩展到能力和残疾的许多领域以及环境促进因素和障碍。这项定性研究以及其他三项研究(全面的范围综述、专家调查和临床研究)将为界定ADHD的ICF(-CY)核心集提供科学依据,据此可衍生出用于临床和研究环境以及医疗保健管理的评估工具。