The development of the International Classification of Functioning, Disability and Health Core Sets for deafblindness: A study protocol

Background Individuals with deafblindness experience a combination of hearing and vision impairments. The World Health Organization has developed a global framework referred to as the International Classification of Functioning, Disability and Health (ICF) to describe health and functioning. From the full ICF classification, a selection of categories, referred to as ICF Core Sets, provide users with a tool to describe functioning and disability in specific health conditions. There has been no ICF Core Set created for deafblindness. Given that core sets are instrumental in improving clinical practice, research, and service delivery, the aim of this study is to develop an ICF Core Set for deafblindness. Methods As part of the preparatory phase in the ICF Core Set development, there are four studies that will be conducted. This includes the [1] systematic literature review that examines the researcher’s perspective, [2] qualitative study focusing on the individuals with deafblindness experience, [3] experts survey that looks at health professional’s perspective, and [4] empirical study that examines the clinical perspective. The studies will be conducted using the principles outlined by the ICF Research Branch for the development of ICF Core Sets. The systematic literature review protocol was submitted for registration on PROSPERO CRD42021247952. Discussion An ICF Core Set created for deafblindness will benefit individuals living with deafblindness who are often excluded from social participation, policies, and services. An ICF Core Set for deafblindness will have a significant impact on healthcare professionals, policymakers, researchers, service providers and individuals with deafblindness by facilitating communication among all stakeholder to support the functioning of those with deafblindness.

International Classification of Functioning, Disability and Health core set for vision loss: A discussion paper and invitation

The World Health Organization created the International Classification of Functioning, Disability and Health (ICF) to provide a common framework to understand and describe functioning and disability. To make the ICF more applicable for everyday use, an ICF core set can be developed. We are going to reduce the entire ICF of 1400 categories to essential categories that can be used in a specific health context. These ICF core sets are created through a scientific process based on preparatory studies and the involvement of a multidisciplinary group of experts. The aim of this project is the development of an internationally accepted, evidence-based and valid ICF core set for irreversible vision loss. This article describes the process that is followed in detail and invites stakeholders to participate in the development.

The Usability of the Preliminary ICF Core Set for Hospitalized Patients After a Hematopoietic Stem Cell Transplantation From the Perspective of Nurses: A Feasibility Study

Background: A hematopoietic stem cell transplantation (HSCT) has a major impact on the functioning and perceived quality of life of patients. To describe the functioning of patients, a preliminary set of 53 categories of the International Classification of Functioning, Disability and Health (ICF) as relevant for HSCT patients has been selected earlier by a Delphi study. For the implementation of this preliminary ICF core set for patients after HSCT in clinical practice, a feasibility study was requested.Methods: A feasibility study was conducted in an explanatory mixed-methods research design. Qualitative data were collected cross-sectionally by semi-structured interviews based on specific topics related to feasibility regarding the use of the preliminary ICF core set for HSCT patients from the perspective of nurses (five in ICF-trained nurses and five regular, untrained, nurses). Quantitative data, were collected longitudinally by using a mobile health application based on ICF in which the ICF trained nurses registered HSCT patients' functioning.Results: Qualitative analysis indicated that using the preliminary ICF core set is practical and acceptable for providing information about the functioning of HSCT patients from the perspective of nurses. In addition, nurses indicated a demand for this information due to its impact on multidisciplinary meetings and clinical decision-making by involving relevant aspects of the functioning of patients. Management support, trained staff, and designated time to focus on functioning are mentioned as requirements for successful implementation. Quantitative analysis demonstrated that the most used 30% (n = 17) ICF categories are included in the preliminary ICF core set for HSCT patients (n = 24). Energy (b130) was the most used ICF category. Family relationships (d760) was the most frequently and highly positively associated ICF category.Conclusions: From the perspective of nurses, the preliminary ICF core set for HSCT patients is feasible and relevant in gaining information regarding functioning. Applying this preliminary ICF core set for HSCT patients in the anamnesis and the nursing consultations contributes to this information. Further research is needed to look at the perspective of other professionals and HSCT patients themselves.

Study of environmental factors and quality of life in children with cerebral palsy based on international classification of functioning, disability and health

Introduction Identification of environmental barriers is an important factor for improving quality of life. The aim was to investigate the relationship between environmental factors and quality of life of children with cerebral palsy and to prioritize environmental factors affecting the quality of life. Method In this cross-sectional study, participants were children with cerebral palsy ( n = 67) 8–12 years. The European Child Environment Questionnaire and cerebral palsy quality of life questionnaire were used. In order to prioritize environmental codes, each of the items in the European Child Environment Questionnaire was linked to environmental codes of the cerebral palsy ICF Core Set. Data were analyzed using SPSS and Pearson correlation and regression tests. Results There was a significant negative relationship between quality of life and environmental barriers ( p < 0.05, r = −0.36). The European Child Environment Questionnaire covered 75% of the environmental codes of cerebral palsy ICF Core Set. Also, e5 (services, systems and policies) was identified as the main priority of environmental factors affecting the quality of life. Conclusion Occupational Therapists should devote part of the interventional plan to reduce environmental barriers. On the other hand, decision-making organizations have to make supportive laws to improve the physical environment of the home, community, school, and work.