Type 1 diabetes mellitus is one of the most common pediatric endocrine illnesses found today. According to recent figures presented by Diabetes Federation, 382 million people worldwide suffer from diabetes and a whopping 80% of them belong to the low income group. Type 1 diabetes can be a huge burden to the financial, social and psychological resources of patients and their families.
As of date, Type 1 diabetes cannot be cured. It can only be managed through lifestyle changes. Type 1 diabetes is a lifelong condition found in children as young as six months where the pancreas stop producing insulin and the body has to be supported by external administration of insulin to balance the sugar levels. Upon detection of the diabetic condition, the child is put on an insulin regime where he /she is administered two to four separate insulin injections daily depending on the sugar control and is expected to maintain a disciplined lifestyle. The patient (child) is faced with a huge challenge of a sudden need to a reorganised life, follow a restricted diet, exercise regularly, self-monitor the glucose levels and self-administer insulin, while bringing discipline in all aspects of life. Moreover, the patient (child) is fast evolving – physically (bodily growth), emotionally (puberty etc.) and socially (from primary to secondary school to college, etc.).
The New Normal with diabetes can be achieved by finding stability both in diabetes control as well as the social, cultural and psychological turmoil the child goes through after detection.
Design has a major role to play in creating scope for the children (patients) and their families to engage better not only with their doctors and adhere to the treatment plan, but also to motivate them to make sustainable changes in their own lives and move towards the ‘New Normal’ faster.
The Diabetes Clinic of Hirabai Cowasji Jehangir Medical Research Institute, Pune has been experimenting with such design methodologies to facilitate a smooth and sustainable transition to the New Normal. Designers look into the lives of the patients (children) and their families and observed the stressful journey they undertake towards their New Normal. In the process, motives, attitudes, barriers, beliefs etc. that kept patients and their families press on towards their New Normal are identified.
In many cases it is observed that the immediate family gives up sweets and changes lifestyle to facilitate easy transition and better adoption of the lifestyle recommended to the patient. They start avoiding long distance travel or going to social gatherings as they present uncertainties and difficulties in adhering to the suggested lifestyle and medicine/insulin regime. There are instances where the relatives and people around start distancing themselves from the family with diabetic kids. Fueled by ignorance, this leads to a partial social isolation of the patient (child) as well as the family.
Type 1 diabetes is a financial burden on the family as well. Cost of insulin, check-up kits, visit to hospitals etc. add up to an average of Rs 6000 per month. With 80 percent of the patients coming from the underprivileged class, with an average income of Rs 8,000 (or less) per month, managing finances, supporting the patient (child), sustaining the rest of the family, is a huge stress for the parents and adolescent patients. It is observed that such patients (adolescent) often exhibit suicidal tendencies as well.
Instances of organizational apathy towards such children are also seen. Many schools request parents to admit such children elsewhere– saying that it would be difficult for the school to provide special attention to the patient (child).
Understanding the emotional turmoil that a diabetic child goes through is especially difficult as children do not possess adequate verbal communication skills to properly articulate their situation, condition and feelings.
What we do
The Diabetic Clinic of Hirabai Cowasji Jehangir Medical Research Institute has been trying to discern and support both the guardians and patient (child).It has been conducting activities like Art Workshops for patients (children) to create opportunity for them to interact with one another and become friends rather than just be discreet patients visiting the clinic. Visits to the patients’ homes and interaction with the guardians, provided a window into their daily struggles are also part of the process.
For a person to execute a set behavior at any given instance, they need to have sufficient capability, motivation, and opportunity. Using these principles, a game-like tool – “My Canvas” has been designed to help capture behavior patterns and feelings in the patients (children) better. Instead of seeking textual or verbal responses from patients, this game helps children show and tell their story, making it a much richer and valuable source of information. Implications of such a data stream are huge. For example, it could help improve areas such as patient-doctor communication, patient records, community building, etc.
A game-like tool – “My Canvas” has been designed to help capture behavior patterns and feelings in the patients (children) better. Instead of seeking textual or verbal responses from patients, this game helps children show and tell their story, making it a much richer and valuable source of information. (QUOTE)
A twelve year old male juvenile diabetic having no prior history of diabetes in his family. He comes from a lower middle class joint family structure residing on the outskirts of Pune.
The patient is a shy boy who does not like interacting with anyone outside his family circle. During his visits to the clinic, he agrees to everything the doctors asks of him but later does as he wishes. The family closely watches his every move and does not allow him to do anything unassisted.
He has a poor compliance to treatment plan suggested by the doctors. He does not talk or mingle around with children his own age and is only comfortable with younger children. As the patient is not ready to open up, the healthcare team at HCJMRI was finding it difficult to treat the patient holistically.
The Clinic undertook playing the game ‘My Canvas’ with the patient to understand his behavior patterns, feelings and attitude towards diabetes. While playing the game, the patient (child) became angry and exploded saying, “Why me? Why am I the only one with this? I feel angry!” This was a huge breakthrough as the child shared what he truly felt, for the first time, about his diabetes.
Further probing revealed that he was constantly comparing his height with people around him. Most of the people in his surroundings are taller than him – be it the children in his extended family or his schoolmates. He is living under constant fear of being mocked at for his short height so he prefers mingling with children younger than him who are the same height as he is, or shorter.
Once the issue was identified, the parents and patient (child) were counselled by the healthcare team at HCJMRI accordingly. An improvement in the child’s self-esteem and higher compliance to the treatment plan has since been observed in the patient.
The Hirabai Cowasji Jehangir Medical Research Institute has been working towards improving awareness of Type 1 diabetes in Pune and nearby regions.
A sister concern of the Jehangir hospital, the HCJMRI was founded with the objective of helping poor patients and improving lives through research. Since its inception, the Institute has performed work in many medical spheres including cancer, HIV, children and women’s health, and non-communicable disorders such as obesity and diabetes.
The HCJMRI has worked for the upliftment of the community, especially for the underprivileged from slums and villages with particular attention to children under five years, girls and women, and partnering with NGOs as well as with various Government agencies for the sustainability of its programs.
Shilpy Lather is a Communications Designer and Researcher from the National Institute of Design, Ahmedabad. She can be reached at firstname.lastname@example.org