Support group of parent's of cancer patient

Several people come for cancer treatment to Mumbai from all across the country. Cancer is an illness that can impact both young and old. Specific to children cases reported are as young as 1-month old having diagnosed with cancer. The age range being from a couple of months to around adolescent years although cancer is not limited to this range. The children are definitely impacted by this however the caregivers who are mostly the parents are also impacted. The impact of cancer unlike any other disease is life changing. The realisation of humans being mortal comes to face to face with us when someone is diagnosed with cancer. With children being diagnosed with cancer it becomes even more evident as these are children who may have not even started understanding the world around them completely and are diagnosed with life threatening illness. For the parents & care givers nothing can be more devastating than seeing their own child fighting an illness they cannot even completely understand.

Although the process of navigating through this turmoil is not easy, there are certain people and institutes that facilitate the process. The Tata Memorial Hospital in Mumbai not only provides the treatment for cancer but also looks into the other aspects of wellbeing for the children undergoing the treatment as well as the parents. One important area that is addressed in this process is the mental health of the parents. Mpower – The Foundation helps in facilitating this process by providing a support group within the premises of Tata Hospital, to parents on a weekly basis, four times in a month. The support group is the first point of contact for most parents in context of taking care of their mental health.

Parents come with their children from different parts of the country, some from very remote places where even basic facilities may not be available. They are suddenly in an environment which is very different from what they have experienced in the past.

One of the parents mentioned that when they came to the city they only knew the name of the hospital and did not know anything else. Somehow they managed to reach the hospital premises and although help was available and the child was started on treatment, the parents were still tensed and confused as to how things were going to be. When they attended the parent support group, for the first time the parents got an opportunity to express themselves and how they felt. They mentioned getting clarity on several things like managing themselves through this period, managing their children through this period and most importantly that they can speak to a psychologist if they are feeling distressed.

Another parent of an older child came from a very remote region. When the child was diagnosed with cancer the entire family had lost all hope and were viewing this as the end. When they attended the parent support group they met other parents who had similar experiences as them. They became aware that cancer has a treatment available and it is not the end.

As caregivers most parents focus on taking care of the child. They are concerned about the child’s needs and are constantly thinking about the treatment process and the child’s health. In this the parents forget an important part of treatment, that is themselves. They as caregivers forget that as is important to take care of the child’s health, it is equally important to take care of their own health. This might occur due to the demands and the stress that occurs during the treatment process.

Several parents have reported that after attending the parent support group they have realised the importance of taking care of their health as it would be benevolent to the treatment process. They would be able to contribute to the treatment process only when they are in a good health. One of the parents of a younger child had expressed about their difficulty in telling the child about the illness the child had. The parent would get stumped every time the child would ask something about the illness. The parent would give different answers but would find it difficult to talk about cancer. After attending the parent support group, the parent was able to understand how children, especially younger ones think about cancer. The parent also realised the importance of speaking to the child about the illness that they have as it would help in ensuring that the correct information is received by the child and they are able to communicate freely with the parent about the illness.

A parent narrated their ordeal about traveling on foot, by bus and then by train of which the train journey was for 4 days to reach Mumbai. Even after getting their child admitted to the hospital, the parents were in a hassled state of mind. One of the parent’s having a language barrier and not understanding Hindi made it even more difficult. One parent would do all the work of getting medicine, interacting with different professionals like social workers, nurses, doctors and others to get their work done, whereas one parent would take care of the child. Over a period of time it started getting difficult for one parent to do all the running around without any help.

When the parent attended the meeting, the parent got an idea that it was alright if there was a language barrier but the parent can learn to communicate slowly, initially through gestures and then gradually understand the language. The idea that both the parents could work together in helping each other was highlighted through the parent support group. The parent acknowledged that the parent support group helped in feeling better than before as it helped clear several doubts in the client’s mind. The parent expressed gaining clarity through the parent support group. To conclude the parent support group provides a space where parents can express themselves and get clarity. This further helps in reducing the stigma associated with cancer and also allows the parents to understand the importance of taking care of their mental health during this process.

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