Qualitative Study on Functioning and Disability in ASD -the Development of WHO ICF Core Sets

Background:  The International Classification of Functioning, Disability and Health (ICF) was initiated by the World Health Organization (WHO) to provide a comprehensive and universally accepted framework for the description of health-related functioning. The ICF is based on a bio-psycho-social model of functioning, comprising over 1600 categories related to various components of health, specifically; Body functions, Body structures, Activities, Participation and Environmental factors. Not all are, however, applicable to a certain health condition. It is therefore the process has been initiated to develop ICF Core Sets for Autism Spectrum Disorder (ASD); lists of generally-agreed-upon ICF categories pertinent to individuals with a certain health condition. From these core sets diagnostic instruments can be derived for broad research and clinical use.

Objectives:  This study is the third in a series of four international empirical investigations to develop ICF Core Sets for ASD. The objectives of the current study were twofold: First, to use a qualitative approach to capture the perspectives of individuals with ASD, their parents, professional caregivers, teachers, and representatives from interest organizations on functioning and disability in ASD. Second, to identify the meaningful concepts mentioned by the different stakeholders, number and link them to the ICF-CY (Children and Youth-version of the ICF).

Methods:  Participants (N = 33) were recruited in Sweden from clinics and organizations related to ASD. They were then asked to take part in group discussions/individual interviews pertaining to functioning and disability in ASD. Seven questions were administered and meaningful concepts were extracted from their responses and then linked to the ICF-CY by three independent researchers. Group discussions/individual interviews are also being done internationally, but these have not yet been included in the analysis as the data collection process is still ongoing.

Results:  Thirty-three transcriptions were included in the analysis and 1649 meaningful concepts contained in these transcriptions were linked to 146 ICF-CY categories. To include the most relevant ICF-CY categories related to ASD, only those that were identified in at least 5 % of the transcriptions were reported. This left 109 categories for the final results, of which 33 were related to Body functions, 3 were related to Body structures, 40 were related to Activities and Participation, and 33 were related to Environmental factors. The five most frequently identified categories were products and technology for personal use in daily living (73 %), higher-level cognitive functions (70 %), sound (64 %), dispositions and intra-personal functions (61 %) and immediate family (55 %).

Conclusions:  The broad variety of ICF-CY categories identified in the Swedish study site attests to the complexity of ASD and underlies the potential value of the ICF-CY as a framework to capture an individual’s functioning in different life-domains. The current study, which will be completed once results from other international study sites have been included, will in combination with three additional studies (systematic literature review, expert survey and clinical study) provide the scientific basis for defining the ICF Core Sets for ASD for multi-purpose use in basic and applied research and every day clinical practice of ASD.