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db-rehab: Deafblind persons—rehabilitation and quality of life
International Congress Series 1282 (2005) 206 – 208
www.ics-elsevier.com
db-rehab: Deafblind persons—rehabilitation and quality of life Rolf Lunda,*, Mette Holmen Kongsrudb, Line Gundersenc a
ProVista Arendal, Vikaveien 29, 4817 His, Norway b Huseby National Center, Norway c Eikholt National Center, Norway
Abstract. The rehabilitation and quality of life of deafblind persons (db-rehab) is a project on how the results of rehabilitation for the deafblind can be measured. There are many good examples to show that the rehabilitation of deafblind persons has been successful. In spite of this, few surveys have been conducted in Norway that have specifically defined the types of activity that are effective or how much must be invested to ensure good results. D 2005 Published by Elsevier B.V. Keywords: Deafblind; Rehabilitation; Quality of life; Self-assessment; Satisfaction; Coping; Participation
1. Self-assessment as a measuring instrument The project is based on how the deafblind can themselves assess their own circumstances. One instrument that can be used to measure the results of rehabilitating the deafblind (Lund, Holmen Kongsrud, Sund, 2000) was developed in a preliminary project. The instrument consists of a structured questionnaire along with a data program that can be used to evaluate the replies. It is designed in such a way that the user evaluates both the value of and the difficulties involved in carrying out a number of everyday tasks. These various activities are assessed by the deafblind and given a value according to their importance, after which they assess the extent to which carrying out the activity presents problems. The use of self-assessment rather than scoring by an expert provides us with an overview of how deafblind persons themselves experience their situation.
* Corresponding author. Tel.: +47 90 93 80 38. E-mail address: [email protected] (R. Lund). 0531-5131/ D 2005 Published by Elsevier B.V. doi:10.1016/j.ics.2005.05.139
R. Lund et al. / International Congress Series 1282 (2005) 206–208
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2. Satisfaction, coping and participation The most important measuring values are the subjective experience of satisfaction, coping and participation. The degree of satisfaction with one’s own situation is a measurement that is closely connected to the concept of Tquality of lifer and is therefore a crucial factor when assessing the effect of rehabilitation. The activities in the instrument have been obtained from ICIDH (WHO 1999) and ICF (WHO 2002), and have been ranged according to what we know about deafblind persons’ needs and problems. These are activities that are considered to be key prerequisites for developing or preserving one’s role and participation in the community. The prerequisites can be divided into five areas: ! ! ! ! !
prerequisites prerequisites prerequisites prerequisites prerequisites
that allow the activities of daily life (ADL) to be carried out for mobility or movement for being able to receive information for communication for having a social life.
The instrument is used to collect data and can map how deafblind persons themselves experience their opportunities to participate in society. The results can be presented as a
Fig. 1. The figure above show how a plot of activities look like on a computer when the VASP program runs an analysis of the interview.
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R. Lund et al. / International Congress Series 1282 (2005) 206–208
plot of the activities on a graph. The X-axis shows how important the person value each activity. The Y-axis represents the degree of satisfaction the person feels about his own coping of that particular activity. This will score all the activities that are both important to person and that he feels he can cope with to his satisfaction in the upper right corner. Anything that is less important or that are coped with to a lower satisfaction will end up on other locations in the graph. The different categories of activities—like adl, mobility, information, communication and social life have different figures in the plot. This will give a trained eye the easy overview over the scores. The scores will show the selected areas in daily life and plot them according to how the deafblind individual perceive them as important, and how the person themselves feel that he or she has master these (Fig. 1). 3. Greater participation with technical aids? The project also aims to document the type of aids that are in use, and to investigate whether there is a connection between the active use of such aids and the possibility of participating in society. Data is collected from deafblind persons who have received services from technical aids centers, the goal being to acquire data from 100 persons with acquired deafblindness. The data collection began in autumn 2004. NOVA (Norwegian Social Research) will assist in processing the data. Details on this analysis will not be available before the end of the project. The project ends at the end of 2005. It is financed through and the Nordic Development Center for Rehabilitation Technology (NUH) and supported by the Norwegian National Insurance Administration, Huseby Resource Center for the Visually Handicapped, Eikholt Center for the Deafblind. 4. Project management Rolf Lund (ProVista), Mette Holmen Kongsrud (Huseby Resource Center), Gunnhild Pa˚lerud (Technical Aids Center in Buskerud), Line Gundersen (Eikholt Center for the Deafblind), and Kari Lene Valestrand (Norwegian National Insurance Administration). Nordic reference group: representatives of the Information Center for Acquired Deafblindness, the Nordic Education Center for Deafblind Personnel, the activity center for the deafblind in Tampere, Finland, the Association of the Swedish Deafblind (FSDB), and the Association of the Danish Deafblind (FDDB). In addition to providing specialist input, the reference group will also ensure that the results have transfer value to other Nordic countries.
www.ics-elsevier.com
db-rehab: Deafblind persons—rehabilitation and quality of life Rolf Lunda,*, Mette Holmen Kongsrudb, Line Gundersenc a
ProVista Arendal, Vikaveien 29, 4817 His, Norway b Huseby National Center, Norway c Eikholt National Center, Norway
Abstract. The rehabilitation and quality of life of deafblind persons (db-rehab) is a project on how the results of rehabilitation for the deafblind can be measured. There are many good examples to show that the rehabilitation of deafblind persons has been successful. In spite of this, few surveys have been conducted in Norway that have specifically defined the types of activity that are effective or how much must be invested to ensure good results. D 2005 Published by Elsevier B.V. Keywords: Deafblind; Rehabilitation; Quality of life; Self-assessment; Satisfaction; Coping; Participation
1. Self-assessment as a measuring instrument The project is based on how the deafblind can themselves assess their own circumstances. One instrument that can be used to measure the results of rehabilitating the deafblind (Lund, Holmen Kongsrud, Sund, 2000) was developed in a preliminary project. The instrument consists of a structured questionnaire along with a data program that can be used to evaluate the replies. It is designed in such a way that the user evaluates both the value of and the difficulties involved in carrying out a number of everyday tasks. These various activities are assessed by the deafblind and given a value according to their importance, after which they assess the extent to which carrying out the activity presents problems. The use of self-assessment rather than scoring by an expert provides us with an overview of how deafblind persons themselves experience their situation.
* Corresponding author. Tel.: +47 90 93 80 38. E-mail address: [email protected] (R. Lund). 0531-5131/ D 2005 Published by Elsevier B.V. doi:10.1016/j.ics.2005.05.139
R. Lund et al. / International Congress Series 1282 (2005) 206–208
207
2. Satisfaction, coping and participation The most important measuring values are the subjective experience of satisfaction, coping and participation. The degree of satisfaction with one’s own situation is a measurement that is closely connected to the concept of Tquality of lifer and is therefore a crucial factor when assessing the effect of rehabilitation. The activities in the instrument have been obtained from ICIDH (WHO 1999) and ICF (WHO 2002), and have been ranged according to what we know about deafblind persons’ needs and problems. These are activities that are considered to be key prerequisites for developing or preserving one’s role and participation in the community. The prerequisites can be divided into five areas: ! ! ! ! !
prerequisites prerequisites prerequisites prerequisites prerequisites
that allow the activities of daily life (ADL) to be carried out for mobility or movement for being able to receive information for communication for having a social life.
The instrument is used to collect data and can map how deafblind persons themselves experience their opportunities to participate in society. The results can be presented as a
Fig. 1. The figure above show how a plot of activities look like on a computer when the VASP program runs an analysis of the interview.
208
R. Lund et al. / International Congress Series 1282 (2005) 206–208
plot of the activities on a graph. The X-axis shows how important the person value each activity. The Y-axis represents the degree of satisfaction the person feels about his own coping of that particular activity. This will score all the activities that are both important to person and that he feels he can cope with to his satisfaction in the upper right corner. Anything that is less important or that are coped with to a lower satisfaction will end up on other locations in the graph. The different categories of activities—like adl, mobility, information, communication and social life have different figures in the plot. This will give a trained eye the easy overview over the scores. The scores will show the selected areas in daily life and plot them according to how the deafblind individual perceive them as important, and how the person themselves feel that he or she has master these (Fig. 1). 3. Greater participation with technical aids? The project also aims to document the type of aids that are in use, and to investigate whether there is a connection between the active use of such aids and the possibility of participating in society. Data is collected from deafblind persons who have received services from technical aids centers, the goal being to acquire data from 100 persons with acquired deafblindness. The data collection began in autumn 2004. NOVA (Norwegian Social Research) will assist in processing the data. Details on this analysis will not be available before the end of the project. The project ends at the end of 2005. It is financed through and the Nordic Development Center for Rehabilitation Technology (NUH) and supported by the Norwegian National Insurance Administration, Huseby Resource Center for the Visually Handicapped, Eikholt Center for the Deafblind. 4. Project management Rolf Lund (ProVista), Mette Holmen Kongsrud (Huseby Resource Center), Gunnhild Pa˚lerud (Technical Aids Center in Buskerud), Line Gundersen (Eikholt Center for the Deafblind), and Kari Lene Valestrand (Norwegian National Insurance Administration). Nordic reference group: representatives of the Information Center for Acquired Deafblindness, the Nordic Education Center for Deafblind Personnel, the activity center for the deafblind in Tampere, Finland, the Association of the Swedish Deafblind (FSDB), and the Association of the Danish Deafblind (FDDB). In addition to providing specialist input, the reference group will also ensure that the results have transfer value to other Nordic countries.