20 Years of ICF-International Classification of Functioning, Disability and Health: Uses and Applications around the World.

The International Classification of Functioning Disability and Health (ICF) was approved in 2001 and, since then, several studies reported the increased interest about its use in different sectors. A recent overview that summarizes its applications is lacking. This study aims to provide an updated overview about 20 years of ICF application through an international online questionnaire, developed by the byline authors, and sent to each World Health Organization Collaborating Centers of the Family of International Classifications (WHO-FIC CCs). Data was collected during October 2020 and December 2021 and descriptive content analyses were used to report main results. Results show how, in most of the respondent countries represented by WHO-FIC CCs, ICF was mainly used in clinical practice, policy development and social policy, and in education areas. Despite its applications in different sectors, ICF use is not mandatory in most countries but, where used, it provides a biopsychosocial framework for policy development in health, functioning and disability. The study provides information about the needs related to ICF applications, that can be useful to organize targeted intervention plans. Furthermore, this survey methodology can be re-proposed periodically to monitor the use of the ICF in the future.

Your ideas about participation and environment: a new self-report instrument.

PURPOSE: To examine the meaningfulness, usefulness and acceptability of a new self-report instrument: "your ideas about participation and environment" (YIPE). METHOD: Cognitive interviewing was employed with 10 adults with disabilities to explore YIPE questions and formatting. Thematic content procedures were used in data analysis. The instrument was revised; participants were re-interviewed and data were re-examined. RESULTS: Participants considered the YIPE as a helpful tool to assist with developing person-centred goals and communicating their needs to health professionals, thus establishing its meaningfulness. They believed it could be useful at various points in the intervention process (e.g. preparation, monitoring, and evaluation). Participants also endorsed the YIPE's computer-based format, thus confirming its acceptability. CONCLUSIONS: The findings support the meaningfulness, acceptability and usefulness of the YIPE and consequently its potential for empowering service users and promoting person-centred care. Using the International Classification of Functioning, Disability and Health as the basis resulted in an instrument that was appropriate for understanding the interrelationship between participation and the supportiveness of the usual environment in which participation generally takes place. IMPLICATIONS FOR REHABILITATION: The YIPE is a useful tool to assist with developing person-centred goals, communicate needs with health professionals and it can be used at various points in a therapy process (preparation, monitoring or evaluation). The interrelationship between participation and the environment is important to consider when measuring functioning. Self-report empowers people to play an active role in interactions with health professionals and promote their own care.

Community-based rehabilitation (CBR) monitoring and evaluation methods and tools: a literature review.

PURPOSE: To identify and analyse tools and methods that have been reported in the literature for the monitoring and evaluation of community-based rehabilitation (CBR) programmes. METHOD: A literature review and descriptive analysis were carried out to scope CBR monitoring and evaluation methods and tools. A search was conducted using PubMed and Google Scholar databases, hand searches and reference lists. Reports were retrieved, screened and information was extracted and analysed against research questions. RESULTS: There were 34 reports which met the inclusion criteria. Analysis of the 34 reports showed that most reports used demographic and programme data. A range of methods were used: interviews, focus groups and questionnaires being the most common. Apart from this, no common standardised procedures or tools were identified and there was not a standard approach to the inclusion of people with disabilities or other CBR stakeholders. CONCLUSIONS: The findings suggest that there would be value in creating resources such as guidelines, common processes and checklists for monitoring and evaluation of CBR, to facilitate efficient and comparable practices and more comparable data. This needs to be done in partnership with people with disabilities, CBR providers, partners and researchers to ensure that all stakeholders' needs are understood and met. Implications for Rehabilitation While there is broad scope and complexity of CBR programmes, there needs to be consistency and a valid approach in the monitoring and evaluation methods and tools used by CBR programmes. The principles of CBR and CRPD require that monitoring and evaluation involve people with disabilities, CBR managers and staff not only as informants but also in the design and execution of monitoring and evaluation activities. The consistent use of appropriate and valid monitoring and evaluation methods and tools will contribute to developing a stronger evidence base on the efficacy and effectiveness of CBR.

Fundamental questions before recording or measuring functioning and disability.

PURPOSE: This paper seeks to contribute to thoughtful description, recording and measurement of functioning, by discussing some fundamental questions to consider before starting, framed as: why, what, how and who. METHOD: Generic literature on measurement methods and the more specialised literature on application of the ICF over the last decade inform the consideration of these questions. The context of recording or measurement is examined, including the moral and legal framework of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and the technical framework of the International Classification of Functioning, Disability and Health (ICF). RESULTS: Whatever the setting in which describing, recording or measuring is being undertaken - in policy development, service planning and management, clinical management or population health monitoring - determining the purpose is the key starting point. Purpose (why) frames the consideration of content (what), method (how) and source (who). Many generic measurement methods can be applied in the disability field, but there are challenges particular to the field. The perspectives of people with disabilities and "patients" require consideration, especially with the trend to person-centred care and the social justice principles emanating from the UNCRPD. CONCLUSIONS: Considering these basic questions is a pre-requisite to meaningful recording and measurement of functioning and disability. Future challenges include: incorporating environmental factors into measurement; setting thresholds on the disability spectrum; and combining the views of the person concerned with those of various professionals.

New directions in health care and disability: the need for a shared understanding of human functioning.

OBJECTIVE: Human 'functioning' is about how people live on a day-to-day basis. This paper sets out the case for adopting a common language about functioning that would improve population health information and information sharing across health and community service systems. APPROACH: Modern health systems recognise the importance of human functioning in addition to diagnosis and disease prevention. 'Functioning' is important in the context of chronic disease, mental health, healthy ageing, and the right of people with disabilities and their carers to participate in society. We outline major directions in the health system and their relationship to the concept of functioning. CONCLUSIONS AND IMPLICATIONS: The concept of functioning has not been used explicitly and consistently in Australian health and human service systems, which nevertheless deal with the 20% of the population who experience difficulties in functioning. The International Classification of Functioning, Disability and Health (ICF) is the international standard for definition, classification, information and measurement of functioning. While it has been partially implemented in Australia, it should be used more broadly, across health and community services, as the basis for information on functioning. This is an intended parallel to the use of the ICD as the standard classification and code list for disease monitoring and related health information systems. Monitoring health status and planning interventions and resources require information about people's functioning in their daily lives as well as their diseases. Such information should be based on the international standards developed for this purpose.

Eligibility, the ICF and the UN Convention: Australian perspectives.

The UN Convention on the Rights of Persons with Disabilities, in Australia, acts as a philosophical and moral statement and framework guiding integrated and strategic policy across the nation. Broad policy agreement has been reached by governments, and both the government and non-government sectors are developing strategies for implementation or evaluation. There is however a need for a more integrated approach to disability policy and information, reflecting all three components of the Italian project: legislation and a high level philosophical framework and policy guide; a technical framework that can underpin specific policies and programs aiming to achieve the major goals; and , a language and set of tools, relating to both the above, that provide infrastructure for assessment methods and information systems. The International Classification of Functioning, Disability and Health (ICF) is the ideal tool to support the latter two components, consistent with the UN Convention. While the ICF has been used as the basis for national data standards, in population surveys and in the national data collection on disability support services, there is considerable scope for greater use of it, including using all domains of the Activities and Participation and the Environmental Factors component for policy, information and service provision, to advance a disability-inclusive society. Information available from the income support system and from generic services could be enhanced by reference to the ICF components. It would be of significant national value in Australia, especially as a 'continuum of care' is desired, if consistency of concepts and information were expanded across health and social welfare sectors. It would then be possible to obtain consistent data from health, aged care, disability and community services systems about key aspects of health and functioning, building a consolidated picture of access and experience across these sectors. Without attention to all three components of the Italian project and continuing effort to meet the challenges identified in this paper, it will not be possible to determine whether the goals of Australia's National Disability Agreement or the ambitions of the Convention are achieved.

Design and quality of ICF-compatible data items for national disability support services.

PURPOSE: To examine the structure, distribution and interrelationships of International Classification of Functioning, Disability and Health (ICF)-compatible items in Australia's national data collection about disability support services. METHOD: Rasch analyses were carried out on 93,000 records relating to people aged 15 to 64 years, receiving disability support services in Australia in 2003. The range of disabilities and services received was diverse. 'Support needs', in all nine life areas based on the ICF Activities and Participation domains, are recorded in the national data collection in one of the following three categories: 'needs no help/supervision in this life area'; 'sometimes needs help/supervision'; or 'always needs help/supervision or unable to do activity'. RESULTS: The results of the analysis demonstrate the value of the 'support needs' questions. The three categories of need for support were distinct and widely separated; the ICF domains were also found to be distinct. The results also showed that 'support needs' in one subset of ICF Activities and Participation domains could not be used to predict values in another subset. CONCLUSIONS: The two-dimensional question about 'support needs' offers promise as a general data capture tool for indicating 'extent' of disability. Caution should be exercised in the omission of any ICF Activities and Participation life areas for measurement in diverse populations.

The ICF as a framework for national data: the introduction of ICF into Australian data dictionaries.

PURPOSE: A country's data may influence and inform its policy and services, if suitably designed. This paper describes how two related and interacting activities--work on disability concepts and classification as well as the preparation of national data dictionaries--have been carried out in Australia, with this purpose. METHOD: Three key ingredients were combined. A broadly based advisory group was established to ensure the use of disability concepts that are meaningful not only to policy makers but also to the Australian community. This group advised on two 'twin' activities: participation in the revision of the key international classification for disability, and specification of data elements for a national data dictionary according to international standards. RESULTS: National data elements were developed, based on the Beta-2 draft ICIDH-2, and accepted for use in Australian national data dictionaries on a trial basis. CONCLUSION: The purpose and process have been accepted as valuable, and there is interested anticipation of new Australian standard data elements based on the ICF.