30.06.2017 "The relatives have a right to be heard."
Interview with Sibylle Glauser. Ms Glauser is President of the Psychiatry Network for Relatives (PNR), the psychologist in charge of the service for counselling relatives at University Psychiatric Services in Berne (UPD AG), and she is a member of the care team of the Canton of Berne, which provides emergency psychological support. Sibylle Glauser talked with spectra about working with relatives in psychiatry and is affected herself – her brother has suffered from schizophrenia for many years. We learned that information from discussions with relatives is important both for the patient and for the relatives, who feel appreciated and relieved as a result.
What is the role of the relatives in psychiatric treatment?
It is a very important role in two respects. On the one hand, I should point out that about two-thirds of psychiatric patients are cared for by their families and relatives, and they receive support in many ways (everyday chores, financial matters, etc.). These are tasks that don't need to be provided by the health system, so relatives help to reduce costs, resulting in significant savings. We also learn a lot from discussions with the relatives – for example how the relatives experience the patient and how the patient copes with his everyday routine. This is an external view, which is not possible for doctors if they don't consult the relatives. However, information from such discussions can help one to understand the problem better, or even contribute to finding a solution.
At the UPD, we work according to the following principle: the relatives have aright to be heard. Confidentiality is not violated if one listens to the relatives and takes their concerns seriously. However, the patient's specific details, including information on their location or treatment, are protected by professional confidentiality and may not be passed on directly or indirectly against the patient's wishes.
What are the challenges for the relatives of psychiatric patients in general, and for health care in particular?
A very important topic for the relatives is the balance between the degree of autonomy that they should allow the patient, and the care that they feel the patient needs. Relatives are under considerable stress, and whatever they do, they usually have little confidence that they are doing the right thing. Adapting to their new situation is very demanding, depending on how the disorder progresses as well as the expectations and current condition of the patient. Sometimes one approach works, at other times a different approach works better. It is a difficult balancing act to meet the needs of the patient while maintaining the necessary distance. Studies of the stresses experienced by relatives have shown that objective stresses (such as delusions, hearing voices, nocturnal activity and so on) are easier for the relatives to cope with than the emotional reactions to the objective stresses.
Mothers in particular are tormented with feelings of guilt. Relatives are often ashamed of the incomprehensible behaviour of the patient. The feeling of being impotent and helpless in this situation is also difficult for me to bear as a sister. One should be wary of the well-meant and theoretically correct advice of specialists, since it is of little use – particularly for the relatives of seriously ill psychiatric patients. Even if living together with the patient becomes unbearable when the disorder is acute, many relatives adapt to the situation because they know from experience that the requirements for sheltered housing are not satisfied. The stigmatisation (and self-stigmatisation) that psychiatric patients suffer from is an additional burden. Prejudice and blame forces the relatives into social isolation.
Is the available information sufficient for relatives?
In the last ten years, advice centres for relatives have been established in several psychiatric institutions in the German- speaking part of Switzerland, including including the UPD. However, more still needs to be done in Switzerland. Of course, relatives have a great need for information. They want to know more about the disorder and how to cope with it, about how psychiatric treatment works, and last but not least, what sources of support are available for them as relatives. Information should be available in a timely manner at the onset of the disorder. It should also be easy to understand and specific to their situation.
The relatives also need more information on financial aspects. There are parents who fund their adult children completely for years, because they're afraid that they could become recipients of invalidity insurance. This is often perceived as extremely shameful. Relatives are often completely unaware that the most important aspect of registering for invalidity insurance is not the pension, but the reintegration of the patient.
Can anybody come to you?
Yes, about a third of the people who come to see me are relatives of an ill family member who is not (or not yet) under treatment. These people usually have nobody to assist them and are desperately seeking help.