Cancer is undoubtedly one of the deadliest diseases that has affected mankind. It is yet to be fully understood, however, on the positive side, statistics highlight hopeful developments in declining cancer-related mortality. In this technological era, where fast-paced innovations constantly open up new avenues for cancer diagnosis, subsequent treatment and also cancer care, there is one aspect that remains under-discussed. This aspect has more to do with psychology per se but has deep implications, not just for a person affected with cancer, but for that matter, any other terminal illness.
UNDERSTANDING THE ENTIRE PHASE OF CANCER TREATMENT, NOT JUST FROM A PATIENT’S POINT OF VIEW, BUT ALSO FROM OTHERS’ POINT OF VIEW
This is especially of much significance in the present time and in the coming years as there is a higher possibility to be diagnosed by cancer. There also lies a prospect of a growing and ageing population, the number of people living and suffering from cancer thereby rising substantially. Coupled with the fact that the majority of the population also follows an unhealthy lifestyle due to various reasons, it may result in some cancers becoming chronic in nature. It, therefore, becomes quite necessary, not just for the caretakers of the patient but also for parents and everyone in general, to be aware of this issue.
The doubt and unease of a cancer diagnosis can create extreme disruption in the life of almost any individual. A cancer diagnosis can be responsible for a feeling of a threat to one’s general sense of security and orderliness in life. Although the vast majority of cancers are treatable, many people retain deep-seated fears that any cancer represents pain, suffering, and death. There has been quite a stigma that is created when someone talks about a cancer diagnosis. Agreed, it is a life-changing moment, not just for the patient but for the family, relatives, close friends and acquaintances alike, but it isn’t the end of the world. Cancer survivors are in fact, testimony to the fact that cancer, when diagnosed early, can be cured and the survivors can resume their normal lives with renewed strength and vigour and a positive outlook once they have recuperated from the disease.
The reason why there’s an emphasis on a cancer diagnosis is that, often, there is a hesitancy to speak about diagnosis, treatment and even supportive care, which tends to isolate the patients and their caretakers. This would be in fact, disadvantageous when it comes to the context of accepting cancer prevalence. Moreover, this hesitance (in some cases, even silence) prevents survivors from contending with the more ordinary, but crucial, aspects of long-term care and survival, such as recovery into the home and work life after the end of treatment, behaviours for long-term health and end-of-life considerations.
HOW A FAMILY REACTS?
When an individual suffers from cancer, it isn’t just him or her who suffers. It affects the lives of the family and also the near and dear ones, may it be close friends or relatives of the patient. “Research clearly indicates that cancer enters the emotional, social, physical, and spiritual well-being of patients and their family members (Northouse, 2005). It presents a major crisis for them as well as the patient (Glajchen, 2004).” A general feeling of negativity naturally seeps into the ones affected and “…can contribute to many reactions, including feelings of loss of control, disrupted family organization, and altered relationships (Shell & Kirsch, 2001)”
Another feeling that arises usually is a feeling of vulnerability, the vulnerability and awareness of inability of the family members to protect their loved one, especially when they are no more, often results into an intense feeling of helplessness. Furthermore, the patient and the family members tend to have similar thought processes and also share common beliefs and hence, the reactions of the family members are often analogous to that of the patient.
Family members play an important role in providing support to many patients. However, the way by which they can provide the required support to patients and meet their needs in the best manner possible may require a period of trial and error. For example, some patients may want to be more independent, whereas their family members may feel the need to be protective. This often results in friction leading to a feeling of hatred and increased tension on both sides. Lack of communication poses a serious threat as well, for it could lead to the feeling that one’s needs are going unrecognized and may also develop the feeling of being isolated or being cut-off from normal family life.
Another very important issue that often needs to be taken care of, is children. There could be two scenarios here, a) where the child is the patient suffering from cancer and b) where the child is related to the cancer patient.
As a general observation, a child’s response to a cancer diagnosis depends on his/her capacity to understand and his/her level of understanding of the seriousness of the issue and how the parent responds to it. Depending on the age of the child (which in this case, is the patient), there are 4 developmental stages recognized. For the sake of simplicity, the 4 stages (along with the age) are mentioned below, in layman’s terms: –
- a) Infants/Toddlers (0 to 2 years)
- b) Preschoolers (3 to 5 years)
- c) School-age (6 to 11 years)
- d) Adolescents (12 to 18 years)
The impact of the treatment of cancer in the above age groups varies with age which often poses psychosocial challenges, cognitive challenges, and behavioural changes in response to the treatment and drug administration of varying degrees. What should be kept in mind, and which is often quite unmet, is that despite the illness, there must be a strong peer support system, especially when the child is of school-age or is an adolescent. Social interactions with other children undergoing cancer treatment can be promoted through hospital-based activity programs or support groups, or through specialized camps.
It is not a surprise that the treatment of cancer, in most cases, bars a patient from attending school which results in him or her missing out on the academic as well as the social learning opportunities. Clinicians often recommend a constant involvement with the school community to ensure a sense of normalcy and continued educational attainment. Efforts can be made between the school faculties and the parents / friends / close relatives of the patient so as to allow flexibility for the cancer patient in terms of academics and other co-curricular / extracurricular activities such as a specialized educational plan that caters to the academic needs of such patients, home-tutoring, shortened school days, unlimited absences, shortened assignments with a focus on quality instead of quantity etc. Additionally, such representatives (encompassing of family members / friends / close relatives etc.) of the patient can conduct visits to the school of the patient wherein they educate the teachers, healthcare personnel or the students on the topic of cancer, cancer care for the patient and also facilitate the development of peer support. This makes things easier for the re-entry of the patient post-treatment/recovery. The school teachers and healthcare personnel can further be educated on the effects of cancer treatment such as fatigue/nausea and an additional symptom-management plan can be set up in case of medical exigency.
As far as the second case is concerned, parents with cancer have to decide at what point they will talk about their illness to their children. It is usually easier to talk to a child once one’s own initial shock has subsided. But it is good to tell a child about the illness at an early stage. This gives the child more time to adjust to the situation gradually.
It is important to talk to a child about cancer honestly and bearing in mind the child’s age and level of development. Keeping cancer, a secret isn’t of much good, as children will sense the change in the atmosphere.
Children of different ages react differently to a family member having cancer. Their initial response may vary between being shocked and hence, crying and insignificance due to inability to understand, but they will, in any case, feel worried and frightened, sooner or later. This may be evident from eating disorders, sleeplessness or problems at school.
Children need care and togetherness. They should not be kept at a distance from the person who is ill. It is important that the child feels that he or she is taken care of regardless of the situation. A reassurance should also be given to the child (especially when the patient is closely related to the child, for example, a sibling or a parent), making him/her understand that the illness was not caused by him or her. It is also important to ensure that children or young people get sufficient support and the opportunity to relieve themselves emotionally.
Having a close relative, friend or acquaintance, who can provide the kind of need and support that a child may want in case a situation arises, is also beneficial. It is also important that a similar support system is created with a teacher at a school or someone at a day-care, who has probably gone through a similar situation and hence, is capable of providing the kind of support that the child needs.
An adolescent is in a stage of physical, emotional, mental, social and psychological growth which is often accompanied by instability. It, therefore, makes sense that the entire span of adolescence is nothing short of a tough phase, especially when there isn’t a proper support system. This phase of instability may make things even tougher for him or her if someone close to the adolescent is diagnosed with cancer. They are preoccupied with thoughts about their ideologies such as relationships, values, complex emotions, feelings, questions about the nature of the disease and whether the disease is hereditary or whether someone else has the chance to contract this disease etc., death, and so on. An adolescent’s reaction to a parent’s illness may be severe, often involving rage, feeling ashamed of the parent or by closing up. Despite this, with a young person it is important to talk about the illness openly and honestly.
HOW TO DEAL WITH IT?
Symptomatic ailments of cancer can be treated by appropriate medication and cancer care but what about the psychological and social impact that cancer creates?
A few of the many psychosocial issues that cancer survivors can go through are: –
- Fear of recurrence: – Cancer patients always have the fear that the cancer may relapse. In such a situation, the survivor should be able to know his or her body well enough to distinguish between any normal change and any serious symptom which needs to be reported to the doctor.
- Negative emotions: – Emotions such as grief, depression, lack of self-esteem pertaining to body image etc. often is something that survivors go through. Counselling, honest, and open conversations and support groups can help overcome such negative emotions.
- Survivor guilt: – Some people, especially those who are older, tend to feel guilty for having survived a cancer, as they tend to equate death to salvation. If someone goes through a prolonged sense of guilt, its best that they are shown to a psychotherapist. Support groups also help in such cases to overcome such sense of guilt.
- Spirituality: – For some people, life takes a whole new meaning post cancer treatment as their belief in spirituality strengthens. This has a positive effect as research indicates that engaging in spiritual practices improves quality of life through a strong community network, adaptive coping, lessened depression and other negative emotions and enhanced physiological function.
Apart from this, survivors often, are reluctant to speak about their treatment to their co-workers, especially if the survivor has a job and is working. They feel that their co-workers might not relate to them anymore, more so because they have not gone through the testing time that the survivor has gone through. In such a case, support groups associated with the workplace can help the survivor.
A fundamental aspect of cancer care is treating the psycho social impact that cancer and by extension, cancer treatment has. Everyone understands that it is a rough phase, even though it is not entirely possible to gauge the trauma that either the patient or their family / relatives / friends / acquaintances go through.
What can be done, however, is to create a network of individuals volunteering to help such cancer patients with their treatment by providing them the cancer care that they need and also by engaging the cancer patients/survivors with support groups. It is also important that members of the society volunteer on their own to visit such survivors, gain their experiences and be a helping hand while they adjust to the society.
Its important that students, co-workers, colleagues and in general, the members of the society be educated about cancer, the experiences that the cancer survivor goes through and at the same time, make him or her feel like he isn’t different from anyone else. People should, in general, be more receptive, understanding and be ready to help such survivors.
Members of the society can take up initiatives that promote upliftment of the survivors and help them engage in tasks or exercises that enhances co-operation and collaboration and at the same time, focuses on improving their health.
Last but certainly not the least, spirituality should be promoted to help develop a positive outlook in survivors. Not only does it help in developing a better community network but also it helps in improving one’s own health.
-Mr Anand Nair
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