- Published on 28 August 2013
Improvement in quality of life as a goal of treatment is gaining more and more in importance. Patients with loss of hearing or other adverse physical or psychological effects as a result of a disease therefore need a good rehabilitation therapy that enables them to lead a normal life again. Consequently, personalised therapies are becoming more and more important in many medical fields, and ENT medicine is one of them. This year’s annual meeting of the Deutsche Gesellschaft für Hals-Nasen-Ohren-Heilkunde, Kopf- und Hals-Chirugie (German Society for ENT Medicine, Head and Neck Surgery) specifically included a topic section concerning quality of life. Petra Kirchem, who holds a degree in psychology, gave a lecture on this topic area. Audio Infos visited her at the Implant Centrum in Freiburg.br>
Mrs Kirchem, you are one of two psychologists at the Implant Centrum Freiburg. Together with Dr Burger you are in charge of the psychological accompaniment of the CI patients here in the area. Does CI rehabilitation therapy really lead to an improvement in the quality of living?
Petra Kirchem: Right now we are conducting a study about the quality of life of adult CI patients. The results so far have shown that patients receiving rehabilitation already experience significant improvements in all aspects of their quality of living, which is gradually getting closer to that of the general population, after just one year of therapy. Within the framework of this study we can prove the positive effects of the rehabilitation therapy we offer. This therapy consists of the cooperation of different disciplines like medicine, technology, speech therapy, music therapy and psychology, and is specifically adjusted to the individual requirements of each patient. This is essential because quality of life, the primary goal of these rehabilitation measures, is a subjective feeling, and assessment, therefore, needs to take into account the various special needs of every single patient.
“Goal of the rehabilitation should be the participation of the patient in social life.”
How can you assess quality of life?
Petra Kirchem: The patients are asked to give a subjective evaluation of their mental state, their handling of the illness, and their social participation, first at the beginning, and then again later in the course of the rehabilitation. There are a number of different questionnaires that can be used for such an evaluation. They are all standardised, conforming to certain norms and rules. In our study we use the scales of the rehabilitation therapy questionnaire IRES-3, which is based on the bio-psycho-social model of the WHO.
In what way does the research of quality of life benefit these patients?
Petra Kirchem: My colleague Dr Burger wrote a doctoral thesis on the topic of “Quality of life of parents of children with CI surgery.” The results of his studies prompted the Implant Centrum in Freiburg to employ two psychologists. I am one of them. Dr Burger could prove that the parents go through certain phases in which they experience the same stress as someone who suffers from a serious heart disease. Such phases are, for example, the first time they hear the diagnosis or the beginning of the CI rehabilitation therapy. In his studies Dr Burger also found out that after the first year of rehabilitation and CI treatment the patients experienced a quality of life similar to that of normal people, but that a sudden change for the worse occurred in the course of the second year. This change occurred especially frequently when the children reached school age. Such a phase presents new challenges to both the children as well as the parents. This can lead to more stress and therefore to a lower quality of life. For us, this means that we have to prepare the parents for such stressful situations in advance by giving them advice and support.
Which options do you see for parents and child when the child reaches school age? Not every young cochlear implant user has the chance to attend a special school for the hearing-impaired, like the one in Stegen, near Freiburg.
Petra Kirchem: When I started my work here I saw mainly the positive aspects of sending children with CI to regular schools. But in the course of my daily work I have realised how important it is for the development of a healthy self-confidence in hearing-impaired children to be in contact with similarly affected children. I remember a young adult who put it very well: “I can live in both worlds, in a silent world as well as in a hearing world.” It is important to be able to relate to both worlds.
What effect does school life have on the identity of a juvenile CI user?
Petra Kirchem: My impression is that a child definitely needs both worlds. If I were the mother of a child who attends a regular school, I would make sure that my child has enough contact with other CI users as well as with children of normal hearing. I think that is very important.
What does a good rehabilitation therapy look like?
Petra Kirchem: There should be several specialist disciplines available that cover as many different aspects related to hearing impairments as possible. These disciplines should not just include the traditional ones like medicine, technology, audiology, and speech therapy, but also music therapy and psychology. Here I’d like to refer to the guidelines of the Deutsche Gesellschaft für HNO (German Society for ENT). Goal of the rehabilitation should be the participation of the patient in social life. In order to achieve an optimal social integration for and with the patient, a close interdisciplinary cooperation is indispensable. Only then it is possible to adjust rehabilitation individually to each patient. In order to achieve this, you also have to actively include the patient when deciding on goals at the beginning of the rehabilitation, and you need the regular evaluation of the reaching of these goals by the patient.
As beautiful as the idea of interdisciplinarity may be, it is often just used as a catchphrase!
Petra Kirchem: That’s right. It is often used as a catchphrase. Last year we established new structures in the ICF in order to improve interdisciplinary cooperation: all specialists involved in the treatment of a patient meet twice a week. All the patients under treatment are discussed. These meetings are extremely useful, not only for the people who treat the patients, but also for the patients themselves.
Do all patients need psychological accompaniment?
Petra Kirchem: No, not all of them. The results of our study show that between 25 - 30 % of all patients show conspicuous or severely conspicuous findings concerning their mental states, compared to the general population. This corresponds approximately to the indications for psychological counselling determined by us at the beginning of rehabilitation.
What does a psychologist do in a hearing rehabilitation therapy?
Petra Kirchem: We usually see our patients every three months. This means we don’t work as therapists but rather as counsellors. Certain typical problems of adult patients and parents of hearing-impaired children come up for discussion again and again in our counselling sessions. Adults are frequently concerned with the question of identity, loss of control, coping, maladaptive behaviour or an upsetting of their self-esteem after having been hurt or insulted. Parents often mourn the loss of a “healthy child” and have difficulties accepting the fact that their child is hearing-impaired. They need advice on how to support the development of a self-confident child or how to cope with child-rearing problems as well as problems with partners.
The notion that the psychological aspect is of importance is only now slowly gaining acceptance. How do you explain that?
Petra Kirchem: Even nowadays patients are often confronted with a purely bio-medical way of looking at things. This means that if someone receives a CI, the focus is on the implantation, the technical adjustment of the implant, and on the audiological testing. There are clinics that are of the opinion that this is enough. Our experience shows that good audiological results do not automatically lead to satisfied, integrated patients. This can be the case with patients who had withdrawn from society before they were implanted with a CI, and who are subsequently having difficulties in trying out and developing their newly acquired hearing ability in social situations. Psychological counselling in rehabilitation can enable such patients to gradually widen their scope of action. Only then can we speak of a successful CI rehabilitation.
Does such dissatisfaction affect the way a patient uses a CI?
Petra Kirchem: Yes, certainly. I remember an elderly lady who seemed to be permanently dissatisfied although the initial audiological results were good. After a while, we noticed a stagnation of the hearing development. We attributed this to a worsening use of the implant caused by dissatisfaction. The case analysis, which took into account the environmental and personal factors of the patient, showed that the only social contact left to this woman was her daughter, who lived at a distance from her mother. Being able to use the telephone was, therefore, of enormous importance to this patient. But telephone training does not usually take place right at the beginning of rehabilitation. So for this patient the telephone training was done earlier than usual, which led to an increased motivation of the patient and an improved usage of the implant. The psychological counselling sessions also focused on the avoidance of social situations. In such cases, a purely bio-medical approach just doesn’t work.
How do you propose to bring about a re-thinking on part of the doctors?
Petra Kirchem: For example, by providing more information and by broadening the perspective. The WHO already introduced a bio-psycho-social model for a widening of the bio-medical thinking and incorporated it in their statutes in 2001. Essential concepts of this model are self-determination and participation as general goals of rehabilitation. Self-determination and participation of patients in rehabilitation are not only key demands of the WHO, they have also been entered in the German legislation by the SGB IX §4 and §8, and characterise the rehabilitation guidelines of the Bundesarbeitsgemeinschaft für Rehabilitation (BAR) (Federal Association for Rehabilitation).
And these guidelines apply to all German CI centres …
Petra Kirchem: Yes, they apply to all certified centres of rehabilitation. Such centres have to be certified according to the guidelines of the BAR. The implementation of these guidelines requires suitable personnel resources as well as a pooling of expert knowledge with regard to hearing. From an economical point of view this is only possible for competence centres, which means that it can’t be offered close to home for all patients.
Could regional psychological accompaniment and counselling in CI treatment work for outpatients on a local level?
Petra Kirchem: Offering such patients psychological and medical treatment on a high level is only possible by specialising on CI treatment and CI rehabilitation. If you take into consideration the aspect of resources as well, it becomes clear that it can only work if you pool competences in one place. An alternative to inpatient rehabilitation would be a psychological accompaniment of outpatients by registered psychotherapists. But there are several problems: most registered colleagues lack the specific expert knowledge, and they might not be sufficiently practised in verbally communicating with hearing-impaired patients. Besides, our patients don’t usually need psychotherapy but the accompanying support of a rehabilitation psychologist who is in close contact with all the other disciplines required for the treatment. A psychotherapist will hardly be able to accomplish that for outpatients.
“Unfortunately, there are only 10 to 12 psychologists active in the CI field.”
Do clinics share information concerning their experiences in the area of rehabilitation?
Petra Kirchem: Yes, they do. For example, there are such exchanges of information at medical and audiological conventions for specialists, like the one that has just taken place in Nürnberg. And the therapeutic heads of some CI centres have formed the Arbeitsgemeinschaft Cochlear Implant (Re)habilitation (ACIR) – the Association Cochlear Implant (Re)habilitation. ACIR has established a minimum of criteria which a centre has to fulfil in order to be admitted. They also offer training programmes so that centres that don’t meet the requirements can acquire the missing standards. At the moment, we psychologists are lacking a network, but we aim to establish one soon. One reason for this lack of a network is probably the fact that the importance of psychology in CI rehabilitation is still being underestimated, which is demonstrated by the small number of psychologists – just 10 to 12 – who are active in this field.
Mrs Kirchem, in the name of Audio Infos, I thank you very much for this interview.
Photos: Jan-Fabio La Malfa