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Psychological and psychosocial support for people who care for a seriously or chronically ill relative and who are often left outside the focus of professional care.
For people who care for an ill relative
Caring for someone with a serious, chronic or advanced illness often means that life gradually becomes organised around that person’s needs – medical check-ups, treatment, medication, feeding, transport, administrative matters, home care and constant readiness to respond to any change.
Relatives are often left outside the focus of care. They are expected to be informed, calm, organised and emotionally available, regardless of how frightened, tired or uncertain they themselves may feel.
Prolonged caregiving can lead to physical and psychological exhaustion, feelings of guilt, irritability, sleep disturbances, anxiety, social isolation and a gradual loss of space for one’s own life.
Psychological and psychosocial work with relatives is not secondary to the care provided to the ill person. Supporting the carer is important both for their own health and for the sustainability of care within the family.
Psychological support for relatives of a person with a serious illness
What is it?
A serious illness affects not only the patient. It changes the relationships, daily life and sense of the future of the entire family.
The relative may simultaneously be a partner, parent, child, organiser of medical care, mediator with institutions and the person who must remain “strong” in front of the patient. Gradually, their own fears and needs may be left with no place.
Relatives often experience conflicting feelings – love and irritation, hope and fear, a wish to help and a wish, at least for a while, to escape the situation. Such experiences do not indicate a lack of love. They may be a natural result of prolonged strain.
Psychological work creates a space in which the relative can be regarded as a separate person with their own experience, rather than solely as a “resource” for the patient.
Led by: Dr Margarita Tareyn
Who is it suitable for?
For partners, parents, adult children, siblings and other significant people who support a relative with a serious or chronic illness.
When can it be helpful?
- immediately after a serious diagnosis is made;
- during prolonged treatment;
- when the condition worsens;
- in the fear of loss;
- in persistent anxiety;
- in a feeling of helplessness;
- in irritation followed by guilt;
- when caregiving begins to occupy almost the whole of life;
- when the relative has no one to speak freely with about their own experience.
What does the psychological work involve?
A conversation about the current situation, the emotional burden, the relationship with the ill person, family roles, personal boundaries and the support resources available.
Depending on needs, the work may take the form of short-term counselling or longer-term psychotherapy.
How does the first meeting proceed?
The illness is discussed to the extent necessary for the psychological work, together with the nature of the care, the relationship with the ill person and the relative’s main difficulties.
Format and frequency
Format
Individual, in person or online, when appropriate.
Duration and frequency
From one or several consultations to regular psychological or psychotherapeutic work.
Who conducts the consultations?
Psychologists and psychotherapists with competence in medical psychology, psycho-oncology, serious illness and family work.
Important
Support for the relative is not aimed at discussing the patient behind their back, but at the experience and needs of the person seeking help.
Assessment of caregiver burden
What is it?
The carer’s burden is not determined solely by the number of hours spent on caregiving. What matters is the physical needs of the ill person, their degree of dependency, the duration of the illness, family relationships, financial pressure, the availability of help and the sense of constant responsibility.
Sometimes the relative continues to carry out all the tasks but gradually loses the ability to recover. Sleep disturbances, concentration problems, irritability, tearfulness, physical fatigue or a sense of being unable to leave the home even briefly may appear.
The assessment aims to build a clearer picture of the actual burden and to help identify the areas in which the person needs psychological, social or practical support.
It is not a test of whether the relative is caring “well enough”.
Led by: Dr Margarita Tareyn
Who is it suitable for?
For people who provide long-term care for a seriously ill person, a person with a disability, or a relative with significant dependence on the help of others.
When can it be helpful?
- in prolonged feelings of exhaustion;
- in lack of sleep and recovery;
- when the person practically has no time outside of caregiving;
- in a serious impact on work;
- in social isolation;
- in conflicts between family members over the distribution of care;
- when caregiving begins to threaten the carer’s own health;
- when additional support needs to be planned.
What does the psychological work involve?
A clinical conversation about the nature and intensity of the care, the emotional state, sleep, work, relationships, and financial and social burden.
When necessary, standardised instruments for assessing burden, distress, anxiety or depressive experiences may also be used.
How does the first meeting proceed?
A concrete picture of daily life is built – what care is provided, by whom, how often, and what resources are available.
Format and frequency
Format
Individual.
Duration and frequency
One or several assessment meetings, with the possibility of follow-up support.
Who conducts the assessment?
A psychologist with competence in medical psychology, psycho-oncology or work with carers.
Important
High burden is not proof that the person is not coping. It may indicate that the volume of care exceeds the resources a person actually has available.
Support in cases of carer exhaustion
What is it?
Exhaustion resulting from prolonged caregiving can develop gradually and remain unnoticed for a long time.
A person may continue to do what is necessary but feel less and less energy, patience and emotional resource. Irritation towards the ill person, a sense of being trapped, thoughts of “I can’t go on”, and afterwards intense guilt may appear.
It is particularly difficult when the carer believes they have no moral right to rest, pleasure or a life of their own while their relative is ill.
Psychological work helps distinguish real responsibility, feelings of guilt and the expectation that the person should be constantly available.
Led by: Dr Margarita Tareyn
Who is it suitable for?
For people with prolonged physical and emotional exhaustion related to caring for an ill relative.
When can it be helpful?
- in the feeling “I can’t take it anymore”;
- in frequent irritability;
- in loss of patience;
- in constant fatigue;
- in sleep disturbances;
- in feelings of guilt when resting;
- in loss of interest in one’s own activities;
- when personal life has practically disappeared;
- in a sense of hopelessness.
What does the psychological work involve?
Assessment of the burden and mental state, work with feelings of guilt, personal boundaries, and the realistic distribution of responsibilities.
The possibility of involving other family members, social services or outside help may also be considered.
How does the first meeting proceed?
Current daily life, physical and emotional fatigue, available help and what the person feels they can no longer bear are discussed.
Format and frequency
Format
Individual.
Duration and frequency
According to the degree of exhaustion and the needs involved.
Who conducts the consultations?
A psychologist or psychotherapist experienced in working with serious illness and carers.
Important
Marked exhaustion may be combined with a depressive or anxious state. In cases of severe impairment of functioning or suicidal thoughts, further clinical and, if necessary, psychiatric assessment is required.
How do I talk to my ill relative?
What is it?
A serious illness can change the way people talk to one another.
The relative may not know whether they should ask about the illness, talk about the future, or behave “normally”. The patient, in turn, may remain silent so as not to worry the family. In this way, two people sometimes try to protect each other and gradually remain alone with their fears.
Another problem arises when almost every conversation turns into a conversation about treatment – medication, test results, examinations, feeding and symptoms. The ill person may gradually begin to feel that they are seen solely as a patient.
Good communication does not mean constantly talking about feelings. It includes the ability to be sensitive to what kind of conversation the other person needs at a given moment.
Led by: Dr Margarita Tareyn
Who is it suitable for?
For relatives who find it difficult to talk to a seriously ill member of the family.
When can it be helpful?
- when a person does not know what to say;
- when the ill person avoids the subject;
- in strong fear of upsetting the patient;
- when the relative constantly reassures the patient, without the patient wanting this;
- in tension around treatment;
- when the patient refuses certain forms of care;
- in conversations about prognosis;
- when communication has become almost entirely limited to the illness.
What does the psychological work involve?
Examination of specific conversations, the relative’s fears, ways of listening, the giving of information, questions of patient autonomy, and the possibility of introducing difficult topics without pressure.
How does the first meeting proceed?
The relative describes the situations in which communication is most difficult, as well as how the patient usually reacts.
Format and frequency
Format
Individual consultation or, under appropriate circumstances, a couple/family meeting.
Duration and frequency
From a single consultation to follow-up work, depending on the situation.
Who conducts the consultations?
A psychologist or psychotherapist with competence in medical communication, serious illness and family relationships.
Important
The psychologist cannot decide, in place of the patient, how much medical information the patient should receive. Decisions on medical communication are coordinated with the treating team and take the patient’s autonomy into account.
How do we talk to children about the illness?
What is it?
When a family member is seriously ill, adults often try to protect children by not telling them what is happening.
Children, however, usually notice the change – the absences, the conversations between adults, the anxiety, the hospital visits, the physical changes. If there is no explanation, they may create their own version of the situation, which is sometimes more frightening than reality.
Some children may even decide that they have somehow caused what is happening.
The aim is not for the child to receive every medical detail. The information must be truthful, understandable, appropriate to the child's age and provided gradually.
Led by: Dr Margarita Tareyn
Who is it suitable for?
For parents and other relatives who need to talk to a child about a family member's illness.
When can it be helpful?
- after diagnosis;
- before a prolonged hospitalisation;
- when the physical condition is visibly changing;
- when the illness progresses;
- when the child asks questions;
- when there is a change in the family's daily routine;
- when the adults disagree about what to say;
- when the child shows anxiety or changes in behaviour.
What does the psychological work involve?
Preparing the parents for the conversation – what information is needed, how it should be phrased, and how the child's reactions and questions can be met.
If necessary, separate psychological support for the child may also be offered.
How does the first meeting proceed?
Usually the adults are spoken with first. The medical situation, what the child already knows and what they have observed are clarified.
Format and frequency
Format
Parental consultation, followed if necessary by work with the child or a family meeting.
Duration and frequency
From a one-off preparation session to support at various stages of the illness.
Who conducts the consultations?
Specialists with competence in child psychology, psycho-oncology and family work.
Important
The difficult conversation rarely ends after a single meeting. As the child grows, or as the medical situation changes, new questions arise.
Support in advanced illness of a relative
What is it?
In advanced illness, the family may face growing uncertainty, physical dependency, changing treatment goals and questions related to prognosis and the end of life.
Relatives often have to cope simultaneously with practical tasks and with the gradual realisation that the person who is ill may not recover.
This state may create a particular form of tension – the loss has not yet occurred, but the possibility of it is already present in daily life.
Conflicts may arise around medical decisions, differing views on how much information the patient should receive, or differences between family members regarding care.
Psychological support does not require relatives to "accept" death. It creates a space for the reality, fears, relationships and decisions that the family must go through.
Led by: Dr Margarita Tareyn
Who is it suitable for?
For relatives of people with an advanced, progressive or life-threatening illness.
When can it be helpful?
- when the illness progresses;
- when treatment now has different goals;
- when functional status deteriorates;
- when more home care is needed;
- when there is a strong fear of the relative's death;
- in family conflicts;
- in difficult conversations about the future;
- when there is a sense of complete helplessness.
What does the psychological work involve?
Psychological support, work with anxiety and anticipatory grief, the relationship with the patient, family communication and the caregiver's own limits.
If necessary, psychosocial orientation towards appropriate forms of support and care may be included.
How does the first meeting proceed?
The medical situation is discussed to the necessary extent, along with current care needs, relationships and the most difficult questions concerning the relative.
Format and frequency
Format
Individual, couple-based or family, depending on the case.
Duration and frequency
Adapted to the dynamics of the illness and the needs involved.
Who conducts the consultations?
A specialist with experience in psycho-oncology, severe illness, palliative care and family work.
Important
The psychologist does not determine medical prognosis and does not make treatment decisions. These matters belong to the patient and the medical team.
Preparation for a possible loss
What is it?
When a person cares for a relative with a life-threatening illness, the thought of possible death may be present long before the loss itself.
This experience is sometimes called anticipatory or expected grief. It may include sadness, fear, anger, a sense of unreality, a wish to make the most of the remaining time, and at the same time a strong desire to escape the situation.
Some relatives feel guilty even for allowing themselves to think about death, as if by doing so they are giving up hope. Others try to go through the loss in advance in order to be "prepared".
Full psychological preparation for the death of a significant person is not possible. But space can be created to talk about the fears, the things left unsaid, the relationships and the practical matters the family must face.
Led by: Dr Margarita Tareyn
Who is it suitable for?
For relatives of people with a life-threatening or advanced illness.
When can it be helpful?
- when the prognosis is limited;
- with recurring deteriorations;
- when the thought of the loss becomes constant;
- when there is a strong fear of the future;
- when there are unspoken topics in the relationship;
- with guilt related to thoughts of death;
- when the relative does not know how to be present with the patient during this period.
What does the psychological work involve?
Work with fear, anticipatory grief, feelings of guilt, relationships, and the possibility of having important conversations if and when people are ready for them.
How does the first meeting proceed?
The relative decides for themselves how ready they are to talk about the possible loss. There is no requirement to discuss the topic of death if the person does not wish to do so.
Format and frequency
Format
Individual, couple-based or family.
Duration and frequency
According to needs and the dynamics of the situation.
Who conducts the consultations?
A psychologist or psychotherapist with experience in severe illness, palliative care, loss and grief.
Important
Preparing for a possible loss does not mean giving up hope or medical treatment. Realistic information and hope can exist at the same time.
Support in bereavement
What is it?
After the death of a loved one, life does not automatically return to its previous rhythm.
Especially when the loss is preceded by prolonged illness and caregiving, grief may include not only sadness but also profound exhaustion, emptiness, anger, guilt, relief or a sense of loss of one's own role.
A person may have organised their life around caregiving for years, and after the death find themselves facing the question of what daily life looks like without that responsibility.
Conflicting feelings are not proof of insufficient love. Relief, for example, may be linked to the end of the ill person's suffering or to the end of prolonged physical exhaustion.
Psychological support does not aim for the person to "forget" or quickly finish with grieving, but to find a way for the loss to be gradually integrated into ongoing life.
Led by: Dr Margarita Tareyn
Who is it suitable for?
For people after the death of a partner, parent, child, brother, sister or other significant person.
When can it be helpful?
- immediately after the loss;
- when the person has no space to talk about the deceased;
- with strong guilt;
- with anger;
- with a sense of emptiness;
- when, after a period of prolonged caregiving, the person does not know how to organise their life;
- with social isolation;
- with difficulty returning to everyday roles;
- when grief continues to cause severe and lasting impairment of functioning.
What does the psychological work involve?
Talking about the loss, the relationship with the deceased, the period of illness, the final care provided, feelings of guilt, family relationships and the changes in life after death.
How does the first meeting proceed?
The person decides how and how much they wish to share about the loss. There is no requirement to go through predetermined "stages of grief".
Format and frequency
Format
Individual, family, or in a group for people who have experienced loss.
Duration and frequency
According to the individual process. No predetermined timeframe is set within which grief must end.
Who conducts the consultations?
A psychologist or psychotherapist with competence in working with loss and grief.
Important
Grief is a natural reaction and does not in itself constitute a mental disorder. In cases of severe and prolonged impairment of functioning, suicidal thoughts or other significant symptoms, additional clinical assessment is necessary.
Psychosocial consultation and system navigation
What is it?
Caring for a seriously ill relative often involves not only emotional but also numerous practical issues.
Within a short time, the family may need to find their way through procedures related to hospital treatment, home care, medical devices, social rights, ТЕЛК/НЕЛК, temporary incapacity for work, social services, assistive devices, employment and income.
Information is distributed among various institutions, and relatives often do not know whom to approach or what should be done first.
Psychosocial counselling aims to help structure the situation – identifying the main needs, the resources available, and which competent institutions or specialists the family should be directed to.
It is particularly important when the administrative burden begins to further increase psychological distress.
Led by: Dr Margarita Tareyn
Who is it suitable for?
For patients and relatives who need guidance on social, administrative and practical matters related to the illness and caregiving.
When can it be helpful?
- after a serious diagnosis;
- when work capacity is lost or reduced;
- when help from others is needed;
- when a ТЕЛК/НЕЛК procedure is initiated;
- when a social service is needed;
- when home care is needed;
- with difficulties returning to work;
- when family members need to organise long-term care;
- when a person does not know which institution to contact.
What does the psychosocial work involve?
Assessment of social and practical needs, guidance through applicable procedures, provision of information within the scope of professional competence, and referral to the relevant institutions, medical specialists, social services or other resources.
If necessary, assistance may also be provided with planning care and coordinating between different forms of support.
How does the first meeting proceed?
The condition and functional limitations are clarified to the necessary extent, along with the family situation, work, available support and specific administrative or social difficulties.
The most urgent needs and possible next steps are then determined.
Format and frequency
Format
Individual, with the patient or a relative, and, where necessary, family consultation.
Duration and frequency
One or several sessions, depending on the complexity of the case and the need for follow-up.
Who conducts the consultations?
Specialists with competence in clinical social work, psychosocial support and patient navigation.
Important
The Institute may provide information, guidance and psychosocial support, but does not replace the competent state authorities, medical expert commissions or legal consultation. Decisions concerning ТЕЛК/НЕЛК, social rights, benefits and other administrative procedures are taken by the relevant competent institutions.
Our approach to relatives and caregivers
Caring for another person does not require the relative to stop having their own needs.
Being tired does not mean loving less. Feeling irritation does not negate the care given. Needing help does not mean abandoning the person who is ill.
Especially in the case of prolonged illness, sustainable care can rarely be carried indefinitely by one person alone. This is why part of the psychological and psychosocial work involves considering not only “How can I continue to provide care?” but also “How can I remain a person with a life of my own while providing care?”
Caring for the ill person and caring for the person beside them are not competing needs. Both are part of good, comprehensive care.