Research oriented

Visual Illustration

Visual Strategies to improve

communication

addressing Hemophilia

Visual Strategies to improve

communication

addressing Hemophilia

in collaboration with Hemophilia Federation of India (HFI)

Guided by: Dr. Tridha Gajjar, Dr. Shilpa Das, Rajiv Chandrabhanu, Suruchi Sabnis

Design is often seen as a tool for creating aesthetic appeal, but it's true power lies in its ability to solve complex problems and transform lives. For individuals living with rare disorders, like hemophilia, effective communication can mean the difference between life-altering delays in treatment and empowered, informed decision-making.

What?

My project on hemophilia, conducted in collaboration with the Hemophilia Federation of India (HFI), stands as a testament to how design research can lead to create substantial visualisation directions.

Understanding the ecosystem and finding loopholes due to lack of effective communication. Creating awareness, addressing the everyday issues to create an impact and use design as an aid.

Why?

Out of 136000, only 21000 people are registered, getting information and treatment.   Out of these due to ineffective communication, right information is not consumed and hence leads to ineffective, delayed, wrong treatments, often times leading to disability and psychosocial conditions.

How?

Understanding the Context

Many parents may never have heard of hemophilia prior to learning their son has it and even parents who are aware that hemophilia runs in their family or who have lived with a father or brother with it are often stunned and disbelieving. Universally, parents feel, This can’t be happening to us.

The emphasis today is on prevention of damage resulting from improper or delayed therapy. A parent educated about hemophilia is the first line of defense in acheiving this.

Raising a child with hemophila by Laureen A.Kelley

Stakeholder Mapping and Understanding the Ecosystem

Hemophilia involves a vast ecosystem of stakeholders that impact the individual's life across various domains. Primary stakeholders include patients and their caregivers, such as family members who provide essential support. Secondary stakeholders, like doctors, physiotherapists, and counselors, ensure proper management and care. Tertiary stakeholders, including organizations like the Hemophilia Federation of India (HFI), play a vital role in advocacy, education, and community support.

Alongside healthcare concerns like treatment and diagnostics, psychosocial factors such as family dynamics, social acceptance, and awareness also affect the patient’s well-being. Issues like misconceptions, women getting blamed for being carriers, family and workplace acceptance, and education are parallel to healthcare aspects.

Interviews

27 people were confidentially interviewed, in areas of their personal experience and expertise. These interviewees belonged to different parts of the country and belong to the ecosystem of Hemophilia.

Undertsanding the Journey of a PwH, complications and communication gaps.

These are just a fraction of the questions that a person with hemophilia and their caregivers face daily. The answers? Unfortunately, they often turn to Google, which can be unreliable due to an overload of mixed opinions, or to dense medical books that are difficult for the average person to read and understand. This leaves them struggling to find clear, trustworthy information.

I learned at pretty early age, maybe 4 or 5, I was told that I have hemophilia, but I wasn't fully explained. Mostly my parents used to say, you can't play, you will get hurt, the pain will increase.
PwH, Severe Hemophilia A,
Age 28
Delhi
It is difficult to explain to people, friends or workplace, they don’t understand the concept and question your capabilties.
PwH, Severe Hemophilia A,
Age 23
Mandi, Himachal
My parents always thought physiotheraphy would lead to more bleeds and more factors, we could not afford it already.
PwH, Severe Hemophilia A,
Age 26
Ahmedabad
It is difficult to understand initially what kind of injuries lead to bleeding, what exactly is the situation and how the bleeding needs to be stopped.
PwH, Mild Hemophilia B,
Age 21
Delhi

I knew that my son could be hemophiliac as it runs in my wife family but i didn't know about prenatal diagonsis or even to get him tested until his first bleed. We didn’t think it would happen.
Father of PwH
Udaipur
We didn’t know about inhibitors, suddenly factors were not working on him, I got worried and asked doctors, it was confusing and difficult to handle when he developed inhibitors.
Mother of PwH
Son's age: 12 years
Ahmedabad
When I married him I joined the society too, and I used to get cassette recordings from doctors and learnt about hemophilia to support him. I wish I had better resources to understand him.
Wife of PwH
Rajkot
I didn’t know I was a carrier or even that it runs in my family, it was truly a shock. My in laws blamed me and my family for his problem, they still think it is because of me and my fault.
Mother of PwH
Mumbai

Usually, it is very difficult for them to understand in one sitting. Whatever you tell them. In the first sitting, I think maybe not even 5% of the time, it is all in shock.
Clinical Counceller
Mumbai
A picture can speak a thousand words, no matter how much you explain, when we explain we have a clear picture in mind but when someone listens for the first time new to the subject, the patient family is in a very hazy state of mind, we have to consider that and make it very simple for them to understand.

Hematologist, Mumbai
But usually these patients don't record bleeds properly, they dont exercise regularly, the family is not aware of the long term. Everybody is bothered only about this bleed. Now go take factor, finished. But like long term if the patient has to work, has to travel only if you regularly exercises he will reach there without deformities.
Hematologist, Mumbai
They should be atleast aware of RED FLAGS. How to manage bleeding episodes that occur very frequently, what painkillers can help them, how to use ice compress, when they need rest.
Red flag signs such as, bleed in urine, cough, prolonged bleeds, extreme headache, vomit, they should know when to visit the doctor.
Hematologist, Hyderabad
The condition, symptoms, treatment they are not aware of. The primary health care physician or a local level doctor will not know about hemophilia. The other thing is even if the patients are aware, the patients don't even know the standard of care. They think that one factor is treatment. That is not it. Preventive care is very important.
Hematologist, Mumbai
The child has many restrictions, he would be stopped from activities that boys of his age might be doing cricket, gym, football, they shouldn't play to avoid injuries. It is the job of parents and counselors to make them look at it in a positive outlook, what frame of mind we are inculcating in them.
Hematologist, Noida

My wife, before marriage she googled hemophilia. Google is a very bad tool. A parent also Goggles and they stress out, panic, they go into depression. Third party, a person who is not connected to hemophilia, the normal public. How do you convey hemophilia to them? How do you convey prevention to them?
Member, HFI
I think people are finding it very difficult to understand hemophilia. How do I tell them the difference between pre-natal and carrier detection. Whether you are working internally or externally with advocacy etc, the visualization of hemophilia will be helpful.
Member, HFI
The biggest role of HFI chapters is counseling. But, HFI is a Resource Constraint Organization to focus on building tools for counseling. Pictorial understanding can help HFI in social media, pitches, presentations, counseling.
Member, HFI
Through hospitals they find us and then it is out job to guide them in the right direction. We always make efforts to organise seminars, community events, inhibitor screenings etc.
Hemophilia Society, Ahmedabad

I learned at pretty early age, maybe 4 or 5, I was told that I have hemophilia, but I wasn't fully explained. Mostly my parents used to say, you can't play, you will get hurt, the pain will increase.
PwH, Severe Hemophilia A,
Age 28
Delhi
It is difficult to explain to people, friends or workplace, they don’t understand the concept and question your capabilties.
PwH, Severe Hemophilia A,
Age 23
Mandi, Himachal
My parents always thought physiotheraphy would lead to more bleeds and more factors, we could not afford it already.
PwH, Severe Hemophilia A,
Age 26
Ahmedabad
It is difficult to understand initially what kind of injuries lead to bleeding, what exactly is the situation and how the bleeding needs to be stopped.
PwH, Mild Hemophilia B,
Age 21
Delhi

I knew that my son could be hemophiliac as it runs in my wife family but i didn't know about prenatal diagonsis or even to get him tested until his first bleed. We didn’t think it would happen.
Father of PwH
Udaipur
We didn’t know about inhibitors, suddenly factors were not working on him, I got worried and asked doctors, it was confusing and difficult to handle when he developed inhibitors.
Mother of PwH
Son's age: 12 years
Ahmedabad
When I married him I joined the society too, and I used to get cassette recordings from doctors and learnt about hemophilia to support him. I wish I had better resources to understand him.
Wife of PwH
Rajkot
I didn’t know I was a carrier or even that it runs in my family, it was truly a shock. My in laws blamed me and my family for his problem, they still think it is because of me and my fault.
Mother of PwH
Mumbai

Usually, it is very difficult for them to understand in one sitting. Whatever you tell them. In the first sitting, I think maybe not even 5% of the time, it is all in shock.
Clinical Counceller
Mumbai
A picture can speak a thousand words, no matter how much you explain, when we explain we have a clear picture in mind but when someone listens for the first time new to the subject, the patient family is in a very hazy state of mind, we have to consider that and make it very simple for them to understand.

Hematologist, Mumbai
But usually these patients don't record bleeds properly, they dont exercise regularly, the family is not aware of the long term. Everybody is bothered only about this bleed. Now go take factor, finished. But like long term if the patient has to work, has to travel only if you regularly exercises he will reach there without deformities.
Hematologist, Mumbai
They should be atleast aware of RED FLAGS. How to manage bleeding episodes that occur very frequently, what painkillers can help them, how to use ice compress, when they need rest.
Red flag signs such as, bleed in urine, cough, prolonged bleeds, extreme headache, vomit, they should know when to visit the doctor.
Hematologist, Hyderabad
The condition, symptoms, treatment they are not aware of. The primary health care physician or a local level doctor will not know about hemophilia. The other thing is even if the patients are aware, the patients don't even know the standard of care. They think that one factor is treatment. That is not it. Preventive care is very important.
Hematologist, Mumbai
The child has many restrictions, he would be stopped from activities that boys of his age might be doing cricket, gym, football, they shouldn't play to avoid injuries. It is the job of parents and counselors to make them look at it in a positive outlook, what frame of mind we are inculcating in them.
Hematologist, Noida

My wife, before marriage she googled hemophilia. Google is a very bad tool. A parent also Goggles and they stress out, panic, they go into depression. Third party, a person who is not connected to hemophilia, the normal public. How do you convey hemophilia to them? How do you convey prevention to them?
Member, HFI
I think people are finding it very difficult to understand hemophilia. How do I tell them the difference between pre-natal and carrier detection. Whether you are working internally or externally with advocacy etc, the visualization of hemophilia will be helpful.
Member, HFI
The biggest role of HFI chapters is counseling. But, HFI is a Resource Constraint Organization to focus on building tools for counseling. Pictorial understanding can help HFI in social media, pitches, presentations, counseling.
Member, HFI
Through hospitals they find us and then it is out job to guide them in the right direction. We always make efforts to organise seminars, community events, inhibitor screenings etc.
Hemophilia Society, Ahmedabad

I learned at pretty early age, maybe 4 or 5, I was told that I have hemophilia, but I wasn't fully explained. Mostly my parents used to say, you can't play, you will get hurt, the pain will increase.
PwH, Severe Hemophilia A,
Age 28
Delhi
It is difficult to explain to people, friends or workplace, they don’t understand the concept and question your capabilties.
PwH, Severe Hemophilia A,
Age 23
Mandi, Himachal
My parents always thought physiotheraphy would lead to more bleeds and more factors, we could not afford it already.
PwH, Severe Hemophilia A,
Age 26
Ahmedabad
It is difficult to understand initially what kind of injuries lead to bleeding, what exactly is the situation and how the bleeding needs to be stopped.
PwH, Mild Hemophilia B,
Age 21
Delhi

I knew that my son could be hemophiliac as it runs in my wife family but i didn't know about prenatal diagonsis or even to get him tested until his first bleed. We didn’t think it would happen.
Father of PwH
Udaipur
We didn’t know about inhibitors, suddenly factors were not working on him, I got worried and asked doctors, it was confusing and difficult to handle when he developed inhibitors.
Mother of PwH
Son's age: 12 years
Ahmedabad
When I married him I joined the society too, and I used to get cassette recordings from doctors and learnt about hemophilia to support him. I wish I had better resources to understand him.
Wife of PwH
Rajkot
I didn’t know I was a carrier or even that it runs in my family, it was truly a shock. My in laws blamed me and my family for his problem, they still think it is because of me and my fault.
Mother of PwH
Mumbai

Usually, it is very difficult for them to understand in one sitting. Whatever you tell them. In the first sitting, I think maybe not even 5% of the time, it is all in shock.
Clinical Counceller
Mumbai
A picture can speak a thousand words, no matter how much you explain, when we explain we have a clear picture in mind but when someone listens for the first time new to the subject, the patient family is in a very hazy state of mind, we have to consider that and make it very simple for them to understand.

Hematologist, Mumbai
But usually these patients don't record bleeds properly, they dont exercise regularly, the family is not aware of the long term. Everybody is bothered only about this bleed. Now go take factor, finished. But like long term if the patient has to work, has to travel only if you regularly exercises he will reach there without deformities.
Hematologist, Mumbai
They should be atleast aware of RED FLAGS. How to manage bleeding episodes that occur very frequently, what painkillers can help them, how to use ice compress, when they need rest.
Red flag signs such as, bleed in urine, cough, prolonged bleeds, extreme headache, vomit, they should know when to visit the doctor.
Hematologist, Hyderabad
The condition, symptoms, treatment they are not aware of. The primary health care physician or a local level doctor will not know about hemophilia. The other thing is even if the patients are aware, the patients don't even know the standard of care. They think that one factor is treatment. That is not it. Preventive care is very important.
Hematologist, Mumbai
The child has many restrictions, he would be stopped from activities that boys of his age might be doing cricket, gym, football, they shouldn't play to avoid injuries. It is the job of parents and counselors to make them look at it in a positive outlook, what frame of mind we are inculcating in them.
Hematologist, Noida

My wife, before marriage she googled hemophilia. Google is a very bad tool. A parent also Goggles and they stress out, panic, they go into depression. Third party, a person who is not connected to hemophilia, the normal public. How do you convey hemophilia to them? How do you convey prevention to them?
Member, HFI
I think people are finding it very difficult to understand hemophilia. How do I tell them the difference between pre-natal and carrier detection. Whether you are working internally or externally with advocacy etc, the visualization of hemophilia will be helpful.
Member, HFI
The biggest role of HFI chapters is counseling. But, HFI is a Resource Constraint Organization to focus on building tools for counseling. Pictorial understanding can help HFI in social media, pitches, presentations, counseling.
Member, HFI
Through hospitals they find us and then it is out job to guide them in the right direction. We always make efforts to organise seminars, community events, inhibitor screenings etc.
Hemophilia Society, Ahmedabad

Consise Insights

1. Persons with Hemophilia:

- Difficulty understanding daily management.

- Misconceptions about physiotherapy.

- Limited healthcare awareness, especially among general physicians.

- Social struggles with friends, classmates, and workplaces.

- Unpredictable bleeds limit opportunities and lead to mental health challenges

1. Persons with Hemophilia:

- Difficulty understanding daily management.

- Misconceptions about physiotherapy.

- Limited healthcare awareness, especially among general physicians.

- Social struggles with friends, classmates, and workplaces.

- Unpredictable bleeds limit opportunities and lead to mental health challenges

2. Caregivers (Parents | Partners):
- Awareness and resources for hemophilia management are lacking.

- School admissions pose significant challenges.

- Social stigma often blames mothers for the condition.

- Sometimes assumptions and delay in treatment have   created
issues in children’s joints.

- Family support is critical for child development

2. Caregivers (Parents | Partners):
- Awareness and resources for hemophilia management are lacking.

- School admissions pose significant challenges.

- Social stigma often blames mothers for the condition.

- Sometimes assumptions and delay in treatment have   created
issues in children’s joints.

- Family support is critical for child development

3. Healthcare:
- Primary physicians lack awareness about hemophilia, its symptoms, and treatments.

- Misconceptions about physiotherapy leading to   worsened conditions.

- Patients often delay seeking help, causing more joint damage.

- Lack of awareness about prophylaxis and preventive care.

- Patient education is crucial to improve care standards.

3. Healthcare:
- Primary physicians lack awareness about hemophilia, its symptoms, and treatments.

- Misconceptions about physiotherapy leading to   worsened conditions.

- Patients often delay seeking help, causing more joint damage.

- Lack of awareness about prophylaxis and preventive care.

- Patient education is crucial to improve care standards.

Secondary Research

Existing digital and physical visual aids were anayalised to understand the scope of improvement and exisitng interventions. The loopholes were found with too many medical jargongs, difficult to understand medical daigram, scattered information, too much of confusing text.

Key Takeaways

Through research, key communication gaps in hemophilia management have been identified:

1. Complex Medical Terminology: Medical jargon can confuse patients and caregivers, leading to uncertainty about the condition and treatment.

2. Lack of Target Group Specified and Age-Appropriate Information: Educational materials often fail to cater to different caregivers and age groups, leaving young parents distressed, partners doubtful and teens disengaged.

3. Emotional Support Deficiency: Resources addressing emotional challenges, especially for children, are lacking, leading to isolation and anxiety.

4. Inconsistent Messaging: Fragmented information from various sources leads to confusion and mistrust in treatment plans.

Through research, key communication gaps in hemophilia management have been identified:

1. Complex Medical Terminology: Medical jargon can confuse patients and caregivers, leading to uncertainty about the condition and treatment.

3. Emotional Support Deficiency: Resources addressing emotional challenges, especially for children, are lacking, leading to isolation and anxiety.

4. Inconsistent Messaging: Fragmented information from various sources leads to confusion and mistrust in treatment plans.

Solution

Visual Aids as Communication Bridges

This project proposes visual aids to bridge communication gaps for patients, caregivers, and healthcare professionals.

The deliverables for the project include a series of visual tools that cater to different age groups and purposes,available through councellors, HFI website and chapters ensuring that each audience receives the most relevant and accessible information.

The visual guide system includes:

Visual Aids as Communication Bridges

This project proposes visual aids to bridge communication gaps for patients, caregivers, and healthcare professionals.