Rare diseases, KMSK knowledge platform

Stresses, coping
Emotional Stresses, coping

The diagnosis "rare disease" can turn the life of an affected family upside down - be it for the affected child, the parents, the siblings or the environment.

Thus, families are often preoccupied with countless questions, fears and uncertainties. In addition, there are often financial, administrative and emotional challenges. In this situation, psychological support can help and provide guidance to families.

Disclaimer information

Important notes

Note 1: Psychological support is available to all

For many parents, making use of such an offer is often initially associated often initially associated with inhibitions, because they think that this is only available to only available to people with severe mental illnesses. However, this is not the Case! Psychological support is intended to help parents as early as possible in a Situation as early as possible and not just be there for them when the whole house of cards has collapsed House of cards has collapsed. Sometimes a counseling session of only one or two of just one or two sessions. This varies greatly from person to person. Whether psychological counseling, coaching or psychotherapy can be the right suitable means of choice for your family or your child, you will find out below below.

Note 2: Early psychological care can help cope with emotional challenges

Both the (sometimes quite long) path to diagnosis and the definitive diagnosis are usually accompanied by a major emotional roller coaster ride for many affected parents. Here, psychological help can provide orientation and help to regain control to a certain extent. Among other things, the social services in the hospital can provide appropriate contacts and contact points (e.g., the Kispi Zurich itself offers psychological coaching, among other things, after diagnosis and for coping with the disease). Psychological support can not only help to cope with the illness/diagnosis, but also to cope with certain events/phases in life (e.g. new onset of symptoms, loss of abilities, new developmental steps such as starting kindergarten or school, or planning the next vacation). In this context, the accompaniment is intended to help answer questions and work through problems and, if necessary, can take place over just a few appointments.

Note 3: Watch your resources and get "rest breaks"

Make sure that you create "islands of calm" in your everyday life to recharge your batteries. Whether it's lunch, a visit to the cinema or a weekend with friends, as a couple or simply alone - try to create islands for yourself again and again and plan this as a ritual in your long-term planning. Such so-called coping strategies can be very different within the family. It is important to organize relief (look for this at relief through care and support) and to create concrete time windows for yourself/the partnership or also the siblings.

A scheduling tool (e.g. Doodle) can be helpful here to plan care times with the environment and professional relief offers (e.g. relief service).

The following questions can help you become aware of your own needs:

  • What is good for me?
  • What is the daily routine and how can time slots be created or used?
  • How can I incorporate relaxing moments into my daily routine?
  • Who from my environment or my family can support me and how?

Note 4: Accepting relief is not weakness and keeps from overloading

Relief is immensely important and can be accepted in different ways: Kinderspitex, relief service, community service, help from relatives and friends, cleaning lady, help with cooking or even in emergency institutions. If your child goes to kindergarten, school or training, you will also receive relief and support here. All this helps to regain strength. As parents, you should not feel guilty about leaving your children in the meantime. In the end, your child will benefit if you can recharge your batteries. For example, one perspective might be: "By letting my child be cared for by professionals, I am giving him or her the chance to receive the best possible support. Because first and foremost, I am a parent - not a therapist, a social worker, or any other professional." Of course, you are still your child's experts, because you undoubtedly spend the most time together and know him or her the best - and yet it is important that you regularly allow yourselves small islands of peace. It is good to build up a relief system (if necessary consisting of several institutions and (specialist) persons) early on and not only when it is too late. Such a network can also help you to plan for the long term. In order to optimally plan and secure the care of your child, the creation of a care plan is central. And dare to say yes when friends and relatives offer their support.

Note 5: Involve professionals who are knowledgeable in the field of rare diseases

In the context of psychological support, it can be helpful to to contact psychological counseling centers, psychologists or psychotherapists who are psychologists or psychotherapists who are familiar with rare diseases in children and adolescents And adolescents. Based on their experience, specialists can help you can provide you with appropriate support in view of your psychosocial challenges and appropriate with regard to your psychosocial challenges. Contact points such as hospital social services, Patient organizations and foundations can assist you in finding specialized specialized professionals. This does not mean that Professionals without an appropriate background are not suitable to provide you with psychological support. But specialization can help you to can help to support you appropriately with regard to your particular emotional challenges with regard to your particular emotional challenges.

Note 6: Explain the disease to the child in an open and child-friendly way

Parents deal with the question of how they themselves can help their child and/or siblings the special situation and illness that often determines their Disease, which often determines their everyday life. Open Communication should be the method of choice here. It is possible, for example to explain the disease with the help of children's books. Important is information appropriate for children. At the Children's Hospital in Zurich, for example Has developed comics that explain many rare diseases. This openness helps to find a way to deal with the disease.

Note 7: Inform the environment about the diagnosis

Informing the (e.g. friends, relatives, acquaintances, employers) about the child's rare disease can be helpful in order to gain an Understanding of the family's situation and their behavioral patterns create. It is up to you parents, or later your child, to decide whom to inform and how much to communicate. You can you can come up with sentences in advance to explain the disease so that you do not so that you are not caught off guard when questions arise.

In an acute Situation, it can also be difficult to communicate with the outside world communicate. In this case, you could think about choosing a confidant who will who will inform selected people (family and friends). There are parents who use e-mail or group chats. It also happens that in the beginning The environment is not informed at all in the beginning - only at a later point in time. The strategies are as individual as the people affected are.

Important questions - Psychological care and psychotherapy

Where is the difference between psychological counseling, coaching and psychotherapy?

All three areas are ways of coping with the emotional challenges associated with the rare Challenges associated with the rare disease of affected children. At the same time, however, the three areas differ as follows:

Psychological counseling is available, for example, when affected families are exposed to families are exposed to great stress, which also has an influence on the psychological Well-being of mother, father and/or child (e.g. relationship problems, stress and conflict situations), Stress & conflict situations). At the center of the counseling is the Support of affected families (incl. knowledge transfer of psychological psychological topics such as resilience or coping strategies). Unlike psychotherapy, however, a diagnosis of a mental illness such as depression is not such as depression, so the costs are not covered by health insurance Are covered by health insurance. There are, however, many points of contact that offer psychological counseling free of charge or at favorable conditions offer.

In coaching, goals are set together with the Affected persons (children, family, etc.). A coach guides and accompanies, to achieve these goals.

Psychotherapy can be used when affected parents and children are seeking therapy for a mental illness e.g. depression, which burdens them in everyday life. In the course of the psychotherapeutic process, patients deal intensively with themselves and the factors that the factors that cause the psychological suffering. This new possibilities open up for them in their own actions and experiences Experience. Successful psychotherapy leads to a profound change in the patient's Change in the way of life. It is characteristic that the therapy is only offered by psychological or medical psychotherapists as well as by alternative Alternative practitioners of psychotherapy. The IV can therapy, if this is in connection with the basic illness is related to the underlying disease. Alternatively, it is possible to bill the basic or supplementary insurance is possible. It is best to ask the psychotherapist treating you directly psychotherapist who is treating you.

Where can I find appropriate places to go for emotional support?


Sabrina Bühler-Pojar is a psychologist and affected mother herself. She offers psychological counseling (in the area of Schaffhausen, Beringen, Guntmadingen) around the topics of partnership, sexuality, family planning, disability as well as mourning.

Interesting links


insieme Switzerland

The psychological counseling and accompaniment of insieme is directed is aimed at all people with special needs and/or their relatives who find themselves find themselves in a challenging or stressful life situation. Topics: Relationship and love, sexuality, childhood, puberty, old age, grief, Death, behavioral problems, conflicts with authorities and institutions, etc. Psychological counseling is confidential and free of charge. There membership in insieme is not required.

Interesting links

Psychological office

Child and youth welfare/family counseling

As a rule, each canton offers a competent office for Child and youth welfare/family counseling. This office supports families in their everyday family life with emotionally challenging issues such as: Growing up family quarrels, parental exhaustion, separation, divorce, single parenthood, etc Single parenthood, etc. If you are interested, please contact the responsible office in your canton Canton.

Children's Hospitals

The social services of the children's hospitals refer to internal psychological counseling centers or usually have external contacts and networks Contacts and networks to which they can refer.

Pastoral care

Pastoral care is generally provided by many Reformed and catholic churches, which have trained chaplains in their congregations Chaplains in their congregations. The pastoral care is usually characterized by a personal accompaniment and support of a person, especially in And interested persons do not usually have to be a member of the church in order to Church to receive a conversation or counseling. Inform yourselves church in your region, which offers might be suitable for you might be suitable for you.

Swiss Pro Mente Sana Foundation

Pro Mente Sana offers free advice on personal crises, psychiatric treatment, legal issues or financial support Support. Here, lawyers and psychologists work together with "peers" (people who have gone through a psychological shock themselves) (people who have experienced a mental shock themselves) to help those affected.

Interesting links


What are the contact points for exchanging information with other affected persons?

In addition to psychological or psychotherapeutic support, networking with institutions or people who with institutions or people who share their own experiences - such as Self-help groups - can also help to better deal with the emotional challenges of everyday of everyday life.

To do this, look at

Exchange with affected families

What points of contact in terms of care services are there to provide personal islands of calm?

For children with rare diseases the amount of care required is sometimes staggering. This can be incredibly challenging for parents. It's about finding the best possible support to make their daily lives

make their daily lives easier.

To do this, look at

Relief, care and support

Leisure and time out

Daycare, kindergarten and school

Which points of contact help to deal with the emotionally very challenging topics of "palliative care, preparing, farewell and mourning"?

Interesting technical articles from the KMSK knowledge books "Rare Diseases

1. KMSK Knowledge Book "Rare Diseases - Insights into the Lives of Affected Families"

Irene Eckerli, psychologist at the Center for Speech and Hearing, Zurich: "The mothers are usually right"

2. KMSK Knowledge Book "Rare Diseases - The Way - Genetics , Everyday Life, Family and Life Planning"

Andrea Weber-Käser, Swiss Association of Midwives: "We midwives catch the great fears of parents" "

Prof. Dr. Maja Steinlin, Pediatric Neurology, Department of Neuropediatrics, Development and At the University Children's Hospital, Inselspital Bern: "A functioning partnership is the best resource Resource"

Irene Weber-Hallauer, Social Counseling at the University Children's Hospital Zurich: "Single parents are often exposed to existential financial difficulties"

3. KMSK Knowledge Book "Rare Diseases - Therapies for Children and Support for the Family"

Dr. phil. Nina Zeltner, Psychotherapist/Psychologist, University Children's Hospital Zurich: "Psychological support - so that affected Parents do not go down in the storm"

4. KMSK Knowledge Book "Rare Diseases - Psychosocial Challenges for Parents and Siblings"

Lieve Romanino, psychologist and psychotherapist, Department of Neuropaediatrics at the University Children's Hospital Zurich: "A stressful time, during which we stand by the family."

Daniel Marti, Child and Adolescent Psychiatry and Psychotherapy, Practice for Psychosomatics and Psychotherapy Zurich: "I am there when the whole life is turned upside down."

Sara Fischer, psychotherapist and specialist psychologist: "Education helps to create understanding"

Michèle Widler, psychotherapist in the pediatric palliative care team at the University Children's Hospital Basel (UKBB) and in the practice for Psychotherapy practice in Basel: "Communication is a sensitive is a sensitive topic and varies greatly from person to person"

Michael Villiger, Psychiatric Care Muolen: "Give the child the chance of the best possible support" Support"

Sarah Müller, Relief Service Switzerland, Canton of Zurich: "Limits of resilience of resilience - how parents can deal with it"

Jasmine Mayr, Kinderspitex Ostschweiz: "How mothers affected mothers can draw new strength"

5. KMSK Knowledge Book "Rare Diseases - Digital Knowledge Platform for Parents and Professionals"

Thorge Boes, Ostfriesische Beschäftigungs- und Wohnstätten:

Many parents are burdened with the fear of being to blame for their child's illness

Lic. Phil. Sabrina Bühler-Pojar: Psychologist, affected mother:

Saying goodbye to dreams is a painful process

Christoph Hamann, MD: Inselspital Bern, Children's Hospital Bern:

Many siblings develop impressive abilities to cope with life