The talk was delivered by Sandhya Sharad on World cancer day – 4th February 2016 at the Acharya Bangalore B school, department of Biochemistry and Life Sciences for Faculty and students.
CARING FOR CHLDREN WITH CANCER: SAMIKSHA FOUNDATION Samiksha Foundation Is a Bangalore-based support organisation that was created as an exclusive learning and activity centre for children with cancer. Their goal is to create the right environment for independent and assisted learning for the children during their course of treatment and also to help families overcome their denial/ despair and accept the reality of cancer in their lives. The mission is to help as many children in distress with cancer regain their childhood through education, learning , fun, play and creative activity , which will help increase their “Happiness Quotient” by leaps and bounds and that in turn also empowers them to move on to mainstream life post treatment, with pride and dignity.
Samiksha’s motto: “The pursuit of knowledge is key to our pursuit of happiness”.
Founder Sandhya Sharad’s The Story behind the mission.
“I am a trained/ practicing architect …Fortunately for me, I had nothing to do with cancer. Then, one fine day in 2007, I met 6-year old Samiksha and her mother at the Oncology Centre of a Bangalore hospital. She bubbled with energy, constantly ran around, chatted incessantly and sang songs, all with a mask on her nose and mouth. It was difficult to believe that she had cancer. On striking up a conversation with the mother, I learnt that all the other children sitting there suffered from different types of cancer and plasma-related diseases. None of them went to school, because of the fear of contracting infection, the treatment pattern and the behaviour of the disease itself. Their parents faced a difficult challenge looking after them constantly, entertaining them and keeping them engaged, apart from all other things that parents have to do. It was a difficult and elaborate task to care for them, since cancer-affected kids at that early age are as demanding and vivacious as every other child! The idea of an exclusive learning and activity centre for children with cancer struck me then- A place that would boost the happiness quotient of both the children and their concerned caregivers. Children could come here and make new friends while learning, playing, reading and participating in activities organised at the Centre. They could even keep up with their studies using the learning tools and opportunities provided. Outings for children and their families could be joyous experiences while helping them connect to the environment. This could also be a place where friends, relatives could visit them, away from the hospital environment.
My vision has began to take shape in 2008… and now this is a full-time, learning experience for me and a lot of people working and volunteering at Samiksha!” The Name of the foundation was given after some deliberation, a lot of suggestions , naming it after this little bright girl I met at the oncology center in 2007.. I don’t know where she is and how the family is, but I do know, that it is an honour to remember her. That was my experience of “synchrodestiny”. Then, 2 years of research, understanding the support required for children with cancer, I discovered that there was at the time no exclusive cancer support group for children with cancer and all of the cancer support groups in the country , primarily focussed on cancer research and or financial support for cancer patients. in general. NOT ONE pediatric oncology support group focussing exclusively on children’s needs. Time and again I came across families, organisations who claim to be doing a lot of things for cancer, and looking deeper, it all boiled down to medicines, chemotherapy drugs, blood donations and all aspects of medical support and financial support for cancer patients in general- nothing specific for the children. I decided to take a completely different , if not unusual approach to children’s cancer in the Indian context. It is an integrated approach to the NON-MEDICAL aspect of children’s cancer support, which in its own way and own time will, I believe, and now I know, change the way we look at cancer in children.
Samiksha works with children between 4-14 years of age. Theirs is not a clinical mission, but a creative learning initiative to provide education and increase the children’s happiness quotient. It is a very different approach. Initially, when the family approaches Samiksha, unsure and skeptical about how to realistically deal with cancer. Through regular meetings, Samiksha helps them to:
Accept the situation: When we work at the pediaric oncology wards, we builds rapport with the families and children and encourage them to actively engage in activity and social talk, projects and learning. This helps them interact with peers cope with the situation with a better perspective.
Accept Medical treatment: Though Samiksha itself does not provide medical treatments, or direct counselling, they help families and children accept medicine as a pre-requisite for their ongoing treatment.
Move on: Finally, they help the children and caregivers move on in life and get back to a new normalcy, as far as the condition allows. In many cases, children return to school and are able to confidently face their peers, moving past cancer to lead happy lives. Statistically this is 76% of the children who complete treatment and also attend the Samiksha program in the meantime.
How Do We Do this? We try to approach Health and Ilness by looking through a TELESCOPE instead of looking through the Microscope. An inspiration from Vijay Bhat, cancer thriver and author of “MY cancer is Me”. To truly understand health and illness, we offer you two parallel perspectives: one will take you through the microscope and zoom in to the cellular level of the physical body,( that which you all learn here at college of life sciences). The other will take you through the telescope and zoom out to the cultural, historical context and provide a holistic view of the health that takes the physical body as one aspect only. As Vijay says,” To be healthy is to be whole. A healthy person engages actively with all the aspects of life- physical, psychological, social and spiritual and copes comfortably with disease or disability” The PHYSICAL aspect refers to the body, its organs, tissues, systems, senses and all biochemical processes that you all study here. A healthy person responds to these needs of the body instead of taking it for granted. The Psychological aspect of the self includes the mind and emotions. A healthy person is able to discern his thoughts and feelings and maintain the inner state and manage his feelings and sensitivity appropriately. The Social Dimension acknowledges that one’s interaction with other people and groups influence how one feels about oneself.A healthy person knows how to respond to the push and pull of various social demands especially relationships. The Spiritual aspect – you know- connecting to onself.. Recognising this divine self is one of the most powerful aspects of the self and a healthy person seeks to deepen this connection with the divine self at all times. These are all in themselves powerful aspects of Health. How does one look through a telescope in Illness? The underlying emphasis here is that any illness is not a random event in one’s life. It is communication of the body with the self. A meaning- the body seeking attention with a message. This approach has great value because it takes in account all the aspects of a whole person and assumes that the illness has a reason. Once this purpose or reason is understood, the healing begins from within. In the case of Cancer this is particularly effective approach, since cancer is formed of cells forgetting to decay and die in one’s own body, not from and external source.
HOW CAN THIS APPROACH BE EFFECTIVE FOR CHILDREN?
This is our understanding at Samiksha. Children are more resilient, they have a strong sense of self. The cancer does not scare them as much as being alone in a difficult situation. The thing that children miss most is their childhood, their school, interacting with their peers, their family life, fun and laughter of childhood. This is where Samiksha comes in. We make sure that the children and families never feel alone in these difficult times. We seek to bring back the childhood joys into the children’s lives during cancer treatment. To do this we tap into their innate optimism and help them in the process of self recovery and healing.
How do we do this? specific Areas of Action:
Through providing Education- Knowledge, empowerment through knowledge. 5-Point Program Samiksha recognises the importance of a Holistic approach and focuses on all-round development through their 5-point S-P-E-C-S approach:
Social Skills: Caring, listening, and communicating
Personal Development: Developing strengths and virtues through formal education and learning
Exploration: Outings and outdoor play for children and their caregivers
Creativity: Activities such as music, drama, art and pottery,origami
Spiritual Development: Yoga, Pranayama, meditation and Tai Chi
Why our work is so important?
When we started there was no such childhood cancer foundations in Bangalore, and today there is some movement there, still our support of education of children in distress with cancer is pioneering – not just because of the large no. we have at Kidwai, but also because of the structure of our program- the continuous care.
The vision: By providing the necessary educational spiritual support for these children, we give them the courage and encouragement to move ahead in life.
This not only supports the children but also the parents and caregivers. All our creative activities attract the attention of parents and caregivers, who actively participate . These are huge distress for them. Others grab the opportunity to get their much needed rest and sleep during this time when the children are engaged!
1. HAPPINESS QUOTIENT: It is never enough to stress the importance of boosting the “happiness quotient” of the children and caregivers through learning, creative activity, engagement, and laughter. The whole world of health is emphasising on this aspect of happiness today, and we have been working on this for the last 7 years with huge positive results.
2. Having said that, let me stress also that volunteering for such a cause is no easy task. Every moment you spend with the kids doing your work or just listening and being there is precious and much appreciated.
3. We currently take care of about 110 children form 3 wards at Kidwai memorial alone and innumerable number of caregivers of children in similar situations outside. Almost 1975 children have gone through Samiksha Programs in the last 6 years and about 1400 of them are back to normal lives at school and learning, living their happy childhood days.
How You Can Help
Since Samiksha is a not-for-profit trust, they operate entirely on sponsorships and volunteer work. They need support by way of
Kannada and English-speakers who can teach Maths, Science and Social Studies, particularly to middle and high school students (6th Standard and up).
Story-telling is a very popular aspect and they need people who can read aloud both Kannada & English story books.Bengali, Oriya and Telugu,Hindi stories too are needed, as we have many children from all these states coming in for treatment.
Artists and Art students can help in their Creative Visualisation programs which are conducted regularly.
Music teachers are welcome to come in to teach the children songs in various languages.
Curiosity and Knowledge: Keep your curiosity on the subject and do research to gain knowledge, both on cancer support and education for children in distress.
Do a research project to document how our work has made an impact in the society and what is the difference between those places where there is no pediatric cancer – non- medical support and compare the results of the impact in a holistic manner.
In addition, volunteers are always required to bring in sponsorships, organise book and stationery drives, help with events like children’s birthday parties, expand our libraries in hospital wards, as well as provide back-end administrative support
IN CONCLUSION: WE are not here to treat the cancer , we are here to learn to understand it in children and help those who need the help to walk along with their cancer, so they don’t ever feel as if they are alone in their struggle with cancer. Source For more information, please visit: http://samikshafoundation.com WWW.CANCERAWAKENS.COM / “ My Cancer is Me “– By Vijay and Nilima Bhat. The talk was delivered on World cancer day – 4th February 2016 at the Acharya Bangalore B school, department of Biochemistry and Life Sciences for Faculty and students. Dr.Manjari concluded the talk with emphasising the support required from the college in this work we do. —————————————–end of doc———————————————————–