Monitoring of family members in cases of serious somatic illness

Definition
By relatives, we mean close family and friends of someone who are affected by serious physical illness. We want to focus especially on children as next of kin. With severe somatic illness, we are primarily thinking of severe chronical, progressive and life-threatening conditions. Suggestions to follow-up procedures are exemplified by cancer in the family, where an adult is affected, someone who is also responsible for children (see Serious illness in the family–Resource Bank).

1.    THE MOBILISATION PHASE

Objectives: To gather information about and achieve contact with the next of kin in need of psychosocial follow-up in cases of serious illness within their closest family or friend network.Measures: The objectives are gained through clearly written routines regarding notification and referral, and regarding the target group for aid measures and criteria for follow-up.

Notification, coordination and responsibilities:
The first skilled person (doctor, hospital employee, nurse) to come in contact with the families should give information about the crisis team’s services, and will ask the person in question whether it is desirable that the crisis team should be notified. Such notification may be appropriate even if the hospital or the health institution where the sick person is admitted have their own program for supervision of relatives. It may be appropriate to combine the hospital plan with supervision from the crisis team, and possibly to transfer parts of the follow-up to the crisis team. It is therefore important that health care institutions and GPs are well informed about what the crisis team can provide. When the crisis team is alerted, one will decide whom the responsible for the follow-up will be.

• Directly, through conversations with the next of kin to survey their needs of information and direct aid measures.
• Indirectly, through informing and mobilising networks.

2.    THE EMERGENCY PHASE

Objectives: Dampen the feelings of loss of control, anxiety and despair of having received a serious diagnosis, to make acute reactions possible to control, and provide an overview of the situation. Assist in mastering a new and difficult situation and, in many cases, a different everyday life.

Measures: The objectives are achieved through clearly written procedures of which measures are to be implemented, such as emotional first aid, care; information and counselling (see Measures).

Coordination and responsibilities (suggestions):Whoever is responsible for the monitoring is also responsible for coordinating the crisis team’s services with other means of care, e.g. coordination of the assistance given by hospitals, GPs, schools or nurseries. The purpose is to avoid having relatives who need follow-up remain without proper care.

Work form:

• Directly, through conversations to survey the needs (see Measures).
• Indirectly, through any advice and guidance given to schools and workplaces regarding how to best arrange everything for the next of kin.

Measures for the next of kin (suggestions):

• The opportunity to ask questions regarding diagnosis, examination, treatment and prognosis.
• If the next of kin are children, it is important to be especially careful that they get adequate information fit for their age, and the same questions regarding diagnosis and disease that the adults get.
• If next of kin are children, it might be important to give information – children may have special needs when it comes to information about how everyday life must be organised, how to solve practical problems, and the extent to which the child’s life will become changed as a result of the disease.
• If there are children among the next of kin: Information to the parents about grief/crisis reactions in children (see Reactions at www.krisepsyk.no / Theme pages, Children and young people, Children and adolescents in crisis and disasters, Grieving children and young people).
• Information regarding normal reactions with the next of kin and relatives when there is serious illness in the family.
• Information about reactions to serious illness and how they can support the sick person.
• To offer supportive conversations regarding experiences and impressions from possible emergency hospitalisation, information on the diagnosis and the hospitalisation in general. Relatives can feel helpless, useless and sidelined in the course of the treatment of a seriously ill family member. They normally have a great need for information, and they may be exposed to strong impressions through the treatment of the sick person. They may need to talk about this. They may also need advice on how to deal with their own crisis reactions (see reactions www.krisepsyk.no / Advice for self-help).
• Advice on how to take care of oneself, as a next-of-kin.
• Assessment of the need for referral to a specialist, and assessing the need for further action (see Mapping.)
• Mobilisation of support from social network, for example help with contacting family and friends.
• Assessment of the need for practical help with demanding care tasks.Measures for friend networks (suggestions):
• Guidance and help to make it easier to get in touch with the ill person/the family.
• Guidance and help regarding how they can express their support and be of assistance.
• When young people become seriously ill, far more people than only their family will be affected. Children and young people rarely seek help for themselves, and may struggle with many questions and reactions to the fact that a close friend has fallen seriously ill (see Children / Young). In cases where there is a need for measures for groups of friends, it is important to obtain consent and cooperation with the relatives and the person who has become sick, if possible. Relevant measures include:
• Information about the illness and the treatment (or helping the sick person give information to others about their illness) and information about reactions and self-help methods.
• Helping the friend network visit the sick person, or to obtain an invitation to visit the hospital (if the sick person and the family don’t mind). Many young people would like to support friends who need it, but they may be unsure of how to do it and may benefit from getting help with crossing that first threshold. Of course, this will vary greatly from one youth environment to another.
• Offer information to the school, the work place (in accordance with the sick and the next of kin) to reduce the spreading of rumours and reduce anxiety (see Resources/cooperation and Network support).

Measures for the school/the nursery (suggestions):
These measures should be coordinated with the school or the nurseries' own plans for emergencies and fatalities. In this context, it is particularly important that this is the school's responsibility as a whole, and not the individual teacher's responsibility. School management should therefore be informed when individual children are affected by serious illness in the family. These measures may include:

• Information to the class or the nursery group (in agreement with the sick and the next of kin).
• Activities in the classroom and the nursery to let kids express their own thoughts and questions, and provide the opportunity for them to express support for the person who is sick, for example through greetings to the sick person.
• Assess the need for specially adapted teaching and exemption of tests for next-of-kin children (see Dyregrov, 2006, Bedre Skole).

Time frames and transfer to further follow-up:

• The emergency phase is defined as the first week after a serious diagnosis has been received.
• Transfer to further follow-up if considered necessary. Some measures following the emergency phase may already have been planned, like further follow-up and information meetings.

3.    FURTHER FOLLOW-UP

Objectives: Follow up the affected, and guide the relatives in how to live with the disease in everyday life. Help with mastering the changes the disease brings. Prevent the development of any traumatic experiences into psychological long-term injuries. Severe illnesses often progress over a long period of time and cause excessive wear. Many families struggle with grief reactions to the loss of function and the changes the sick person goes through. Help for relatives should therefore aim to prevent prolonged wear and offer support to handle hidden grief reactions as a result of the disease. One should be particularly concerned about the tendencies of children and adolescents to under-communicate and hide their anxiety and concern for the sick (see Dyregrov, 2005; Eldevik, 2007).Measures: Objectives are achieved through clearly written routines for regular follow-up and assessment of further needs for support.

Coordination and responsibilities (suggestions): 
GPs, nurses, community nurses, school, nurseries (if children are involved), alternatively municipality psychologists.

Work form:

• Directly, through support talks and assessment of the needs of further referral.
• Indirectly, through advice and guidance.

Measures for adult next-of-kin (suggestions):

• Offer further support talks with skilled personnel from the crisis team. Follow-up of the family through support talks about:•How the illness, and possibly the treatment, may influence their lives.
• How to master everyday life and the importance of accepting help from others instead of using all one's energy on taking care of the sick person (see social network support).
• Mourning reactions due to changes in life prospects (one's life didn't turn out as expected).
• Anxiety for the future, uncertainty about the diagnosis.
• Further needs of practical help and relief.
• How the family functions in the new situation, especially with regard to kids and youngsters.
• How the illness and the treatment may prompt changes in routines and traditions during family holidays, vacations, etc.
• Children's and siblings' reactions and overall state.
• Assessment/screening of anxieties and depression, mourning and exhaustion symptoms. If worrying symptoms arise, one should consider referral to specialist health services.
• Assessment of the need for (extended) sick note.

Services for next-of-kin kids/youngsters:

• For next-of-kin kids/youngsters, rumours and invasive questions about the sick person may be troublesome and taxing. In some families, kids/youngsters are the ones who have most contact with the surroundings. They may thus assume a role as "informants" to others who would like to know how the sick person is doing. It may be necessary to help them handle this, and to help the school give this information instead so that some of the burden is lifted from the kids/youngsters.
• Information about the illness and the treatment, explanation of changes in the sick person's appearance, explanation of the medical equipment, etc. Offering support talks about:
• Worries and anxieties the kid/youngster might have about the illness and prognosis.
• Their relationship to the sick person, ambiguous feelings, feelings of guilt.
• Concentration and achievements at school.
• Changes in daily life and how to handle them.
• Transitions between acute crises where the disease gets worse and the long term.
• The wear and tear of living with a sick person.
• Feeling that one has to take on much more responsibilities in the family.
• Support to make time and space for own activities.
• Their relationships to friends and others of the same age.
• When young people are seriously ill: Following up friend groups and mobilise their network to make and keep contact with the sick child/youngster (see www.krisepsyk.no / Theme pages, Children, Children and young people in crisis and disasters, Grieving children and Helping children).

Measure duration:
Measure duration depends on what kind of illness it is and how it progresses. In life threatening and progressive illness, the family should be followed up with regular contact throughout the course of the illness. It may be necessary with long-term follow-up, reduced during good phases but increased during relapses – or even fatality and the time thereafter. If the disease has caused severe loss of function, a municipal responsibility group might be established upon discharge/transfer to rehabilitation services. Cooperation between rehabilitation services and the crisis team is important when planning further psychosocial follow-up measures.