As there is no cure for MS, one of the main ways to fight the disease is to improve the quality of life of those affected. As the disease evolves, people with MS may need the help of specialised medical and care staff. Families may also need to help provide care too.
We found that some families provided more than 50 percent of their loved one’s care needs, and in many cases, did not have any knowledge of tasks like transferring the person from and to a wheelchair or managing cognitive problems. They often learned how to manage problems as and when they appeared.
Therefore we wanted to develop a project that allowed carers of people with MS to obtain the necessary knowledge for helping and caring for their family member in a professional way. This involved designing a training tool whose main objective was improving the quality of life of both the person with MS and their carer.
The training tool, available as a DVD and CDROM, was designed after identifying and evaluating the training needs of carers. This was achieved through a questionnaire that 418 carers and people with MS from Spain, Italy, the Czech Republic and Greece completed. People with MS and carers also participated in focus groups in each of these countries, and professionals working at daycare centres and rehabilitation centres of MS societies were interviewed to help inform the project.
The project has gone through these phases:
- Analysis of the training needs of carers of people with MS.
- Design and validation of a training tool for carers in five languages (English, Spanish, Greek, Italian, and Czech).
- Dissemination of results through different channels, such as a workshop in Valladolid, Spain, in September 2006, which involved regional and local politicians, people with MS, caregivers, the local MS society, and European and national partners of the project. The results were also disseminated on the project’s website (www.qualifiedcare.net), through the publication of results on the websites of the project’s partners, and by contacting organisations and institutions involved in disability and training.
- Communications plan.
- Quality control.
The training needs analysis of carers of people with MS highlighted a number of key issues. It was found that most carers had difficulties performing their daily caring tasks because their knowledge of the illness has been acquired day-by-day with practice and without training. The major needs identified were psychological support and guidelines for performing transfers. They also said they needed information from professionals throughout the illness and not only at the time of diagnosis. The carers acknowledged the need for training, although they found that time to dedicate to training was a problem. They would therefore like training materials in different formats to follow at their own pace.
The DVD is for people with MS, families and professionals to address their needs for knowledge regarding the care of people with MS, regardless of their level of disability. The DVD/CD-ROM training tool is available from the national MS societies involved in the project.
Partners that have taken part in the
project are:- Associació Balear d’Esclerosi Múltiple
(ABDEM, Spain)
- Federación Española para la Lucha contra la
Esclerosis Múltiple (FELEM, Spain)
- Fundación Esclerosis Múltiple EUGENIA
EPALZA Fundazioa (Spain)
- Greek Multiple Sclerosis Society (Greece)
- Pragma Engineering S.r.l. (Italy)
- BMI Association (Czech Republic)
- Western Greece And Epirus U.E.T.P. (Greece)
- XXI INVESLAN, S.L. (Spain)
For more information about the Qualified Care project please visit these websites:
www.qualifiedcare.net
www.esclerosismultiple.com
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