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Det svensk-sydafrikanska SIDA-projektet "ICF-CY: Ett gemensamt språk" går mot sitt slut. Många forskarutbyten har gjorts under de tre år som projektet pågått och flera artiklar har författats i samverkan. Professor Juan Bornman vid University of Pretoria reflekterar här över lärdomar i projektet. Och alla inblandade forskare är fast beslutna vid att hålla kontakten för att fortsätta samarbetet i någon form.
ICF-CY: A common language for understanding the multi-dimensional construct of disability in childhood
- A collaboration SIDA-project between Sweden
and South Africa 2010-2013
Disability is a multi-dimensional construct, and includes aspects of biological and psychological functioning of individuals as well as societal processes and environmental factors affecting that functioning. Hence defining disability is a complex and much debated endeavor in view of lacking cross-cultural definitions or classification systems. One theoretical framework that has been used effectively in the past is the ICF-CY. The current project focused on aspects of this model. Specifically, the project aimed to investigate (a) clarity and consistency of the conceptual model, (b) utility of the ICF-CY in describing the multidimensionality of disability in research and practice, and (c) difficulties related to clinical application of the ICF-CY. This project started in 2010 and concluded earlier this year with a 2-day joint seminar on “Children with Disability: Focus on Human Rights and Intervention”. Each of the 15 presentations either applied or evaluated the ICF in a particular way, exploring different components of childhood disability and other vulnerable groups as well as the environments in which children function. Most presentations showcased data that had been collected within clinical settings, which made it possible to assess the application of the ICF-CY in rehabilitation.
The first few presentations of the seminar (31 January – 1 February 2013) focused on human rights and disability. The human rights model is a distinct sub model of the social model, and is concerned with the person’s inherent dignity as a human being. Disability is understood as a social construct. The presentations highlighted that children with disabilities are exposed to range of human right violations, such as harassment, abuse, domestic violence, community violence, war and terrorism. Basic needs and rights are closely related, and needs become rights when they are recognized as being necessary for protection and quality of life. It is for this reason that Abraham Maslow’s theory on basic needs provided a useful framework for studying human rights of children with disability. In these presentations human rights were discussed not only as they related to basic needs, but also in relation to the United Nations Convention on the Rights of the Child, and the ICF-CY. The large collaborative project where data was collected from 220 children with intellectual disabilities and their primary caregivers, was used to exemplify these constructs.
Thereafter, various studies that dealt with the experience of pain in children were discussed, which included not only children with disability, but also children with cancer and other diseases. Using the ICF-CY as a framework for understanding pain and the management thereof was interesting and thought provoking. It lead to much discussion and stimulated further research possibilities - I am sure that we will soon see some publications related to this.
The second day of the seminar focused on intervention, particularly early intervention. As an outcome of this collaboration, a variety of contexts, each with its unique characteristics, strengths and challenges were discussed, showcasing examples from not only South Africa and Sweden, but also from Portugal. The contexts in which children function, including the home, pre-schools, day care and more formal schooling were explored and the role of people and activities within these contexts was highlighted.
PhD students and faculty staff also had opportunities to discuss their current research in small groups, and found many areas of commonality regarding their interests, thereby strengthening individual networking and collaborative efforts. Potential joint publications were discussed and sourcing a special edition of a journal is currently underway which will act as a platform for these publications.
However, a visit to South Africa would not be complete without experiencing something of the rich cultural diversity that makes up this country. A new “fika” tradition was started : A’fika (fika in Africa!), providing a taste of ‘koeksisters”, “melktertjies” and “tamboesies”. South African cuisine was further explored with “boerewors” and “braaibroodjies” becoming a favourite, as did all the summer fruit: watermelon, “turksvye” (prickly pears), mangoes and litchis. At Moyo we had another unique dining out experience with face painting while listening to the African drums being played. A night walk through the zoo was a highlight, and we were able to have a traditional “braai”, while the hot African air turned from its orange and pink dusk to complete darkness, allowing us a glimpse of the stars and the South cross. Sitting by the fire with a lion roaring in the background made the evening seem almost surreal… This further whetted everybody’s appetite for the African Wild Cats, and on Saturday we undertook a visit to Ann van Dyk’s Cheetah Farm for a “personal encounter” with these unique creatures.
On Saturday evening around the dinner table at Juan’s house, everybody reflected on what the project had meant and how true the African saying is that the footprint of only one person is narrow. Unlike a single track, many travellers create a wide path. We can all testify that someone working on his or her own does not achieve as much as those who work together to achieve success. This project deepened our understanding of specific issues related to the ICF in terms of conceptual issues, the multidimensionality of disability and implementation of the ICF-CY model in services. Although the official project has come to an end, we know that the collaboration will continue … watch out for our footprints!
Professor Juan Bornman