Cancer has an impact not only on the affected person, but also on his/her environment. The patients suffer from the physical effects of this disease and its treatment, but the psychosocial consequences affect the whole family nucleus.
How does cancer affect the family and social environment of the patient?
It can be claimed that the significant others of the patient with cancer suffer in the same areas as the patient.
Several studies show the same prevalence of affective disorders (basically anxiety and depression) both in the relatives of the patients and the patients themselves. Therefore, relatives are considered “second-order” patients, as they have the risk of presenting affective alterations. Moreover, relatives are not supposed to reveal their suffering, but are expected “to be strong” and cope with the painful situation of having a family member with cancer without showing their uneasiness. Thus, FEFOC is asking for psychological support for the family member or the caregiver, a space where they can relax and ease their burden in order to provide further care and support for the patient. Assess your mood and you will be given a comment on it. You may need help, but you have not even realised it or you might consider it selfish for even thinking about it when the patient should receive all the care. The patient certainly needs help, but you also may need it and keep in mind that you will provide better care if you are feeling well.
In some countries, the disease may result in the risk of losing employment or being forced to reduce employment category and/or the income. Caregivers are repeatedly absent from work due the need to assist the patient with cancer. Even though it is not common in our context, some patients have been faced with some sort of labour discrimination. If you are having problems in this aspect you should consult a lawyer in order to be informed of your rights.
Many families feel isolated as a result of unpleasant experiences. Social isolation is quite common in patients with cancer and also in their families. The demands due to the disease and its treatment sap their energy. Furthermore, the taboo of cancer persists in the general population and many people don’t know how to behave with a friend who has been diagnosed with cancer. On one hand, the doubts about how to act, what to ask about and what not to ask about often result in avoiding the contact with the affected family. On the other hand, the family itself reduces social relationships due to its specific situation, because of rage or shame, or simply because they prefer not to talk about this subject. It is advisable to clear up what is happening as all this may be due to misunderstandings and mistaken perceptions that can be clarified in a simple conversation. You should not suppose that others have turned their back on you, and should start a conversation about your loved one when you feel confident. If you don’t know how to do it, consult a specialist professional or our Psychology Department through our consultation.
In many cases, cancer activates the resources already present in the family. Family relations are not always changed due to the disease, but the family group copes with the situation according to its usual way of functioning, making more obvious those roles or relations already existing. For example, the emotionally strongest person is not necessarily the father or the mother, but the oldest son/daughter or another brother/sister. The children of female patients are often surprised at the defeated attitude or lack of energy of their father when faced with the disease of their mother. On the contrary, in other cases, the parents take the initiative and take decisions according to their own free criteria. Thus, it is difficult to give explicit behavioural guidelines, as the family is rather the interrelations of its individual members than the sum of them. Psychology considers it more useful to adjust to the way each family member is, as imposing unfamiliar ways of acting results in an artificial attitude and the lack of resources in unexpected situations. However, some general advice can be given:
- Family is essential, but the most important protagonist in the situation is the patient who, in fact, copes with the fear of death and the threat to his/her integrity, thus the environment must adjust to him/her. Avoid forcing the patient to get involved in entertainment activities, supposedly appetising meals, participate in social events, above all at the beginning of the disease and in the case of relapse. Many patients close up but in most cases this is transitory. If the patient is still uncommunicative a year after the diagnosis, consult a specialist professional or try to softly talk about it to the patient.
- Don’t pressure the patient to have a cheerful and positive attitude, as feeling obliged to show happiness when it is not genuine can be harmful for the patient, while relaxing and showing anger may initially be helpful for his/her subsequent adjustment. If this negative attitude becomes the norm, it is time to consult a specialist, but not before the first treatments have been overcome.
- Remember the way your loved one was before cancer. Try to find the logic of his/her reactions and acts at present to confirm whether or not they are consistent with his/her usual way of reacting and acting. This will help you avoid extreme thoughts and feeling anxious because “everything has changed and nothing is as it was before, and he/she will never be the same again”. Your loved one is certainly the same person but conditioned by fear and anxiety.
- Remembering how you and your loved one went through stressful situations in the past will help you to make decisions and to feel more confident about your ability to overcome the current situation.
- If you are not sure about what you are going to do, do not make decisions by yourself. This applies to choosing some treatments and rejecting others. If you are offered different alternatives, avoid making rash decisions, and try to consider them calmly and always keep in mind what is best for the patient. If the patient is part of the decision-making, you should talk calmly and ask for a second or a third opinion if you consider it convenient.
- Help your loved one to see his/her reactions from as objective a perspective as possible. He/she may feel observed or considered differently by his/her friends and workmates. Help him/her to find out if this is true or it is due to his/her susceptibility toward other people’s reactions. The taboo of cancer affects all of us.
Communication is the main issue when talking about cancer and family. Communication between the patient and the other family members, and also among the family members themselves, may be affected as a result of the diagnosis of cancer. Although the aspects related to communication vary depending on the type of cancer and the severity of the disease, there are some common aspects. Families can be split into ‘open-door’ and ‘closed-door’ families. Even though this is a broad classification, it may help us to analyse to which type of family we belong to.
- Open-door families talk about and share everything, feelings, emotions, disappointments, happiness, sadness, etc. The advantage of this type of family is that the patient feels loved and supported, and perceives the genuine concern of the others about what is happening to him/her. The disadvantage is the lack of privacy. One can hardly do anything without the others being aware of it, and one can not be sad or angry about something secret, as everybody will notice and give his/her opinion about it.
- Closed-door families do not share, or at least do not share in depth the private and personal issues of each family member. They love each other very much, but they are independent. The advantage is that one preserves his/her privacy and acts without pressure or ties, while the disadvantage is that one often can not count on the others when in need.
These types of family begin to function when one of their members is diagnosed with cancer. Open-door families may enter into secrecy which is difficult to cope with for them, while closed-door families may find themselves in very intense emotional situations they are unable to cope with.
Verbal and non verbal communication:
Human communication is very complex, and is not only related to spoken language. Voice pitch and gestures accompanying our words have their own meanings. What other people perceive when we talk, and vice versa, depends on a global vision, the message itself and the signs that accompany the message. It is not uncommon for some patients to complain about the attitude of their partner or family when they try to express their fears related to the disease. When family members usually defend themselves saying that “I have already told him/her to talk about it whenever he/she wishes to”, many patients reply that “in fact, I can see that he/she does not really feel like talking about it”. In some cases, this is due to the patient’s perceptions, while in others the relative makes an unconscious gesture or adopts body language that is not consistent with what he/she is saying (keeps on reading or watching television when they are supposed to talk…). Therefore, it is essential to clear up all misunderstandings as soon as possible. If the partner feels that it is too complicated, he/she may consult a specialist professional to help them start a conversation which can be very useful.
FEFOC (www.fefoc.org) has a support group specifically for the families of patients with cancer to help them in their difficult task of providing care without having space for their own anxiety and discomfort. Ask for information before you feel too stressed or anxious. The sooner you ask for help, the sooner you will be aware of your own signs of stress and tiredness for which we will provide you support.