A Caregiver's lens of the Healthcare system - A perspective on Emotional Labour in the world of Artificial Intelligence

My speech at the Global Digital Health Summit on 01st Sept 20223

https://youtu.be/vnWVmjxtcw0

AI will definitely impact the physical and intellectual labour that we deploy when we do our jobs. Some jobs, however, require emotional labour - like teaching, coaching, healing, caregiving etc. The emotional labour is the defining, differentiating and the determining factor in the excellence of these jobs, roles and skills.

Over the last couple of weeks, I have been super excited about using AI in various aspects of my work.

I had delivered a speech at the Global Digital Health Summit, Expo & Innovation Awards on 01 Sept 2023. It was a special occasion and very thoughtfully curated by Dr. Rajendra Pratap Gupta, PhD and his team at Health Parliament . They opened the conference with the voices of the patients and their caregivers in order to highlight the significance of patient-centricity. The idea was to share the experiences and expectations from a caregiver's lens.

I parsed the speech through #ChatGPT to summarize the speech. Here is the output:

1. Personal Story: Bhavana Issar shares a personal narrative from the mid-90s about her father's diagnosis with Shy-Drager Syndrome, now known as Multiple System Atrophy (MSA).

2. Family Caregiving: Bhavana’s father, a former Indian Air Force pilot, required extensive care, primarily provided by her grandmother and mother, who did not identify themselves as caregivers.

3. Lack of Recognition: In India, there is no specific term for family caregivers in any local language, highlighting their invisibility and lack of recognition.

4. Challenges Faced: Caregivers deal with significant physical, emotional, and financial burdens, including social isolation and mental health challenges.

5. Statistics: As of 2020, 190 million people in India require long-term care for conditions such as aging, mental illness, and neurological diseases.

6. Role of Women: The majority of caregiving in India is performed by women, who do so unpaid and often without adequate support.

7. Need for Palliative Care: Palliative care is essential yet misunderstood and not fully integrated into the healthcare system in India.

8. Emotional Support and Resources: The speaker emphasizes the need for better emotional support, community connections, and practical resources for caregivers.

9. Digital Technology: Advances in digital technology can provide personalized, holistic care, and support for caregivers, making their roles less burdensome.

10. Call for Community: Bhavana highlights the importance of creating supportive communities and utilizing technology to aid caregivers, advocating for platforms that connect and assist them.

#AI is fascinating - this summary, is rather accurate and very well done. Yet, the impact is very different from the response I received from many in the audience and others who have listened to it. I am curious to hear what what you think.

Global Digital Health Summit 2023 - Speech by Bhavana Issar

Here is the text of my speech:

Let me take you back to the mid 90s. In those days, it took 6 doctors to diagnose it as Shy Drager syndrome. Today it would be easier and called multiple system atrophy or MSA.

We were told that there is no known cause and there is no cure for this autoimmune condition that my very fit father, who was a pilot in the Indian Air Force, now suddenly had to navigate. my father was an only son, an ideal son - the very personification of Shravan Kumar, or RAM. So, when he fell ill, my grandfather really struggled, and was soon gone.

My very strong grandmother, who had been a caregiver to many, now became a caregiver to her only son, along with my mother, the primary caregiver. Just like many others in our country, we did not identify as “Caregivers”, we didn't even know this term. Here is some trivia for you - there is no term equivalent to family caregivers in any of the Indian languages. You will find words like Sevak, sahayak, Teemardar - but none of these are (can be) used for these "gentle warriors" – the family caregivers.

I too believed that I was doing what all of us must do - as good sons, good daughters, good wives, good partners. good parents.

A neurological condition that is debilitating a person day after day in front of you, has significant impact on the health and well-being, the very dignity of the patient while the family goes through social isolation, erosion of their emotional well-being and loss of financial capability.

As of 2020, in India there are approx. 190Mn people navigating a variety of conditions that require long-term and home-based care – ranging from aging, mental illness to neurological conditions like Parkinson's, MSA, MS, MND. These conditions leave the patients in need of care – provided mostly by women as unpaid care at home. These gentle warriors are invisible, unrecognized, underappreciated and under-served - grappling with an emotional roller coaster, empathy fatigue, anticipatory grief, ambiguous loss and are at the risk of mental health challenges.

In the 90s MSA was a rare condition, it took the doctors very long to diagnose, and even longer for us to accept. There is a lot that needs to happen between two doctor visits – and much of the discussion with the doctor is about anxieties, insecurities and fears when the family is looking for hope and miracles. It can be quite a task for the caregiver to track and report the symptoms. In today’s digital age, it could be much easier - with personalized care protocols delivered on a daily/ weekly basis - because it is better to know what to do now, than to imagine and get overwhelmed by what might happen by reading on the net.

#PalliativeCare is an emerging field, often misunderstood to be end-of-life care and yet to be fully integrated in the healthcare system. My father once started saying “Beta, I may not be around the next time you visit…” – I was so overwhelmed that I did not let him finish. Over the last 24 years I have often wondered what he wanted me to know. I wish someone who understood Palliative Care had held my hand and explained to me the idea of a living will, and supported us through this critical conversation.

Each patient is different and their caregivers have unique journeys - as was in our home. What my grandmother went through was very different from what my mother was going through and what my brother and I were grappling with. We were all trying to be strong for the others, and very alone in our struggles. There was no time to pause and think, or feel our emotions, it was difficult to find friends or spaces where one could share.

We were not rich enough to be able to afford hired help and neither were we poor enough to access social support systems. We had just ourselves to depend on. I had wanted my dad to have a wheelchair but it was difficult to afford one – and today it would be difficult to choose the appropriate one. Through the dark days - the only hope would arrive occasionally into our home via post would be a newsletter, from the Sarah Matheson trust in UK. It would give us some information, some tips to patients and caregivers and some ideas of what to expect and we did not feel alone. Family caregivers need a community of others who are walking through similar conditions so that we do not feel alone and we can replenish our emotional reservoirs.

Technology is magical – today, we can order a cab, navigate cities without knowing the local language, deliver groceries in less than 10 min, learn skills and have simulated reality for travel and wellbeing.

I do not even need to say “Imagine”…. Digital technology can enable personalised holistic care from emergency, concierge to community, learning, financial planning and e-commerce – all accessible at our finger tips.

While Modern urban living makes caregiving stressful and burdensome, especially for women - digital technology can help caregivers access time, support and handholding that we need – and even enable gender equality!

There is no substitute to human touch, handholding and the emotional support of someone who understands – and digital technology can help such compassionate Saathis to connect with caregivers, and help them create cherished memories. Caregiver Saathi aims to build such a platform.

What is the role of emotional labour?

If you were building Caregiver Saathi , what would you prioritise and do?

I look forward to hear from you. Do write to me at

[email protected]

#EmotionalLabour #Care #CareEconomy #AI #IndustrialRevolution #Caregiving #Aging #PalliativeCare #HealthTech #Caregivers #WeAreAllCaregivers