The key to an effective, satisfying and holistic response to a situation lies in its clear, objective, and comprehensive understanding. As is said, “The best educated man is he who understands the circumstances he is in.” The truth of the above words may be felt in our day-to-day lives. A crisis – as a serious illness of a loved one – only makes it more imperative to address the complexities of the time in a very correct and comprehensive manner. Such an appreciation of the realities calls for a very dispassionate and objective assessment of the situation at hand. This objectivity, how ever obvious, is not an easy sentiment to achieve. When such a situation involves somebody with whom we have associated the purest and most honest of our sentiments, this objectivity is even more elusive.

It is very difficult – if not incorrect – to be normative in assisting parents in such a circumstance. While dealing with the human mind, you cannot put things in black and white or make blanket generalizations. It is never advisable to advocate “One best way”. Every individual is different from the other. In my capacity as a psychologist, I have focused on helping parents make the best use of the support system that is available to them.  Such a system may comprise the family, relatives, friends, co-workers, other parents in a similar situation, the medical staff, and organizations like ours. I endeavor to present the parents with a choice of various support groups and assist them in making a choice that best addresses their unique needs.

This paper has been drafted in the same spirit. This is not intended to be a prescription for those in the unfortunate position of a parent of a child with cancer. If I may make the parents consciously aware – conscious being the key word - of the options available to them, and then select their sources of support, I would consider this essay a success.

The focus of this paper is on, “How parents can help themselves, and rest of the family, including the child to care more effectively”. I propose to address the topic with a two-pronged approach.

-  Helping the parents get an insight into the psychological aspects of the situation.

-  Helping the parents identify and adopt the most potent support groups to create an effective support mechanism for themselves.

1.  Helping the parents get an insight into the psychological aspects of the situation.

Problem solving is a complex process that has a variety of influencing factors. These include your feelings about the situation (personality characteristics), the relationship between family members, the flexibility and openness to a new approach, and the effects of other life events. Parents must also be helped with the realization that when they are dealing with a diagnosis of cancer, it may not possible for them to control everything going on in their lives. Parents must be helped to overcome the hesitation – and also the fear of seeking support. It may take some time for them to determine how much of themselves to share with others. But as social beings, we must appreciate that some needs lend themselves to being better addressed in a support group - examples are needed for information, such as how children typically react to diagnosis, how to explain this diagnosis at your workplace, and how to communicate better with your doctor. Only when the parents feel less overwhelmed about the situation then they might be able to offer a more effective front to the crisis that life has posed for them.

Over the entire life cycle of the disease and the treatment cycle, parents vacillate between various intense sentiments. For instance:

-   The initial diagnosis may create feelings of confusion, denial, hope, fear, anger, guilt, grief. The parents’ belief in life and their faith are severely tested. These feelings need to be put to rest to the extent possible by effective counseling as they hinder parents’ efforts to face the situation squarely.

-   The breaking of the news of the diagnosis to the child, the family, and other elements of the parents’ society (as friends, relatives etc.) instigates a lot of apprehensions, fear, and guilt in the parents. I came across a serious patient whose family requested me to park my van away from their home lest neighbors should know. Being secretive entails a lot of avoidable tension.

-   Hospitalization of the child involves the parents in dealing with the feelings of trauma, anger, confusion, uncertainty, restriction, and depression in the child. The child may show extreme behavior as either withdrawal, or attention-seeking. Such situations are emotionally trying for parents and children. They must be handled as the situation dictates, but parents must be sensitive to their own child’s need for understanding, reassurance, and reaffirmation of hope.

-   Going home from hospital is another huge change in the lives of the child, the parents and the family as a whole. Establishing normality in the home is the basic task facing the parent. Parents must realize the importance of not being overprotective towards the sick child. This would only create displeasure and resentment in the other children at home and also prevent the child from feeling normal. An encounter with another child who has improved from similar situation is a source of strong motivation to the patient.  The parents must also address the concerns of schooling, teachers, peers, and the continuing medical treatment.

-  When the treatment ends, there is a complete change in the life of the parents. Coping with the shock of diagnosis, the pain and anxiety of treatment, and the disruption of daily life requires a boundless reservoir of courage and compassion. Now the focus must change again. For most families, the end of active treatment eventually leads to a cure. For some, sadly, it ends in death. But regardless of the outcome you must give yourself the credit of facing the struggle head on.  

The post-treatment phase is generally characterized by a fear of recurrence, over protectiveness towards the child, developmental issues of the child, meeting sibling needs, putting the illness in place, re-establishing family life, and providing an emotional buffer for the family.

Meeting the demands of the diagnosis and treatment of cancer creates an enormous stress for the parents. Managing such contradicting sentiments, such uncertainty, and such trauma is not something for which we are geared up naturally. We must seek the help of people and organizations who are willing and able to help. Children are not meant to suffer such pain and agony. We must, therefore, pool all the available resources and support to provide an effective redressal for the concerns of the child. How ever strong a person might have been in dealing with the stresses of personal and professional lives, he would always find the diagnosis and treatment of cancer an excruciating task to handle. This is where organizations like ours step in.  

2.  Helping the parents identify and adopt the most potent support groups to create an effective support mechanism for themselves.

  Once we have established the need for adopting a support mechanism, we must now proceed to present the various available options to the parents. These options must be evaluated and adopted according to their relevance to the situation and the comfort level of the parents. The parents have to reconcile their various roles as brothers, sisters, sons, daughters, professionals, parents to other children, friends and members of the society. Any let up on any of these fronts may create a feeling of inadequacy or failure in the parent and hinder the caring of the child. Our ultimate objective is to care effectively for the sick child. However, we must ensure that our actions are sustainable over a period of time and that they do not stress the other aspects of the lives of the parent. Stressed marriages, and behavioral problems in other children are amongst the most common of fallouts of an impulsive handling of the situation. Therefore, all the stakeholders in our lives must be considered and addressed correctly and adequately to present a sustainable, just and enduring caring mechanism for the child.

If I were to derive the commonalities from the various interactions that I have had with these families, I would present the following aspects as the most important and perhaps critical elements for ensuing a healthy and effective caring of the sick child.

Relationship between the parents:  This seems to be the strongest source of support. Parents who shared a healthy, trustful, and supportive relationship with their spouse have generally fared better in caring for the child. Such parents must appreciate the concern and involvement of the spouse. Communication between parents should be considerate, clear, concise, and trustful. It might happen that one of the parents (especially the mothers) become oblivious to the requirements and concern of the spouse. This is very natural. This is also very harmful for the ultimate objective of providing a good and fulfilling support for the child. Parents are the strongest pillars for the child. Therefore, they must ensure that their relationship is made stronger by this bond of endurance and does not wither away under the strain.

Relationship with relatives, grandparents and friends. Our social interactions are a source of great help in dealing with situations of such overwhelming magnitude. These associations help us vent our feelings and also make us feel secure. Such associations must be leveraged to gather the maximum support.

Hospital staff: The hospital staff, perhaps, is the most mature group in handling these situations. They have seen it all from very close quarters. They have experienced a lot of pain and hope with various patients and parents. They understand the most fearsome and intimate of their concerns. There are cases where parents have actually developed great regard and good relationship with the hospital staff. The unbiased opinions support, and information from the hospital staff has actually helped parents get an assurance that their child was getting good care. Interactions with doctors enables the parents to recognize the competence, efforts and integrity of the doctors, instead of blaming them and suffer from any sense of remorse and repentance if the child does not survive.

The affected child:  Surprising though it may sound, the sick child himself has often been a source of great inspiration and support for the parents. Very often, the courage, patience, and determination shown by the child in undergoing treatment helps the parents firm up against the odds of treating cancer. If your child is fighting it out with such grit and determination, do you have any other choice?

Other parents.  Parents of other children who are suffering from cancer also form a good source of support to each other. Empathy is a strong reliever and forms a strong common bonding between the parents. This association is a great outlet for any feelings of “victimization” and “why our child?” that the parents may be having. Its always easier for parents to accept the help and advice of another parent because it comes from a source that they can identify with and whose concerns are very similar to theirs.

Religion.  Religion has always occupied a high place in being a provider of succor for the emotional turmoil associated with the diagnosis and treatment of cancer. For the believers in the benevolence of the Almighty, it is a satisfying feeling to realize that their child is being looked over by God. Religion also helps parents to accept the situation with the serenity that flows from a strong faith.

In conclusion, I would reiterate that dealing with the diagnosis and treatment of cancer requires a lot of help, support, consideration, and direction from a variety of sources. Parents must acknowledge and appreciate the contribution that these various groups can make towards the effective care for their child. Organizations like ours seek to provide support to parents. However, it would be of great help to themselves if the parents are open and receptive the role of the various groups. Parents must consider it as their responsibility to develop and nurture a good support mechanism for themselves and their families.

What I realize from my dissociation with Sahayata, is that treating cancer has a lot to do with medical assistance. However, as a family, it has also got a lot to do with faith, hope, and patience. These values – faith, hope and patience – are therefore very essential to be upheld.

Dr. (Mrs.)  Nirmala Chaudhry

Sahayata, Chandigarh,  India