Oldenburg health scientist Lena Ansmann and her team are investigating how the care of people without spoken language can be improved.
For most people, language is essential for getting through life. According to a 2007 study, the average person needs around 16,000 words to communicate on a daily basis. "However, there are quite a few people in Germany who can't speak," says Prof Dr Lena Ansmann. These include stroke patients, people with the nerve disease ALS (amyotrophic lateral sclerosis), but above all children who were born with multiple disabilities, reports the health researcher. To enable these people to communicate their wishes and needs to others, curative educators have developed the concept of augmentative and alternative communication: Those affected learn to express themselves using signs, pointing to objects, symbols or communication boards or using speech computers to make contact with others.
Such aids can make communication much easier. However, there is a particular problem with the provision of electronic communication aids. Experts complain, among other things, that responsibilities in the supply chain are often unclear, that standards are lacking and that there are major regional differences. "In the end, many of those affected are given a device to take home that doesn't suit their abilities and then sits unused in the corner," reports Ansmann.
Improving quality of life
The researcher wants to change this: Together with her colleague Prof Dr Jens Boenisch from the University of Cologne, she is leading a project in which a new care model for people without spoken language is being tested and evaluated. It is entitled MUK (Extension of the Selective Contract for AAC Measures) and is funded by the Innovation Fund of the Joint Federal Committee. This committee is the most important organ of the joint self-administration of doctors, health insurance companies and hospitals. Through the Innovation Fund, it supports research projects that aim to improve the care provided by the statutory health insurance funds. This is precisely the aim of MUK: the project is intended to help improve the quality of life of those affected. It is one of the few research projects to investigate the success of AAC not only on the basis of case studies, but with a larger sample.
"Up to now, parents or those affected have gone to the doctor, received a prescription for AAC and then received advice from an aid company," explains Ansmann. It is not uncommon for manufacturers to recommend high-tech devices that are too difficult for users to operate. "This process therefore leads to misuse: Neither can the person communicate better, nor is the device used," says the researcher. The new care model therefore provides for independent counselling. In addition, those affected, together with their relatives, carers or partners, receive four weeks of training and, if necessary, therapy so that they really learn how to use the device. This model has been implemented in three counselling centres in Cologne, Hamburg and Moers for people insured with AOK Rheinland-Hamburg since June 2018.
Evidence-based care
Ansmann, who has held Germany's first professorship for organisational health services research in Oldenburg since 2017, will evaluate the new care model - in other words, check whether the more complex approach actually produces better results. To do this, she and her team are interviewing and surveying experts at the counselling centres that are testing the new model, as well as those affected and their caregivers. As a comparison group, the researchers selected patients from other health insurance companies who also receive independent counselling at the three counselling centres, but without training or therapy. "We also have a second comparison group, i.e. those receiving standard care without contact to a counselling centre, who we invited to take part in the study via the AOK Lower Saxony," reports Ansmann.
In the qualitative part of the study, the team has already conducted group interviews with employees of the advice centres, parents, teachers from schools and workshops, speech therapists and other participants. In this way, the researchers want to find out how those affected who are not yet participating in the new model are faring. Alongside the counselling, training programme and therapy, further interviews and surveys will be conducted longitudinally to determine which problems have arisen and whether the communication skills and quality of life of those affected have now improved - for example, whether they are able to greet someone or express that they do not want something.
The researchers have now sent out the first questionnaires. The study will run until the end of 2019 and involve more than 800 patients and their carers. If the new care model proves to be beneficial, the Federal Joint Committee will decide whether it should be implemented nationwide. Ansmann emphasises: "With our project, we are ensuring that AAC care can be evidence-based in the future."