Family based care

A friend called a couple of days ago, after a gap of several months, informing that her life has suddenly become very busy and unpredictable. A family member is terminally ill and so she is taking care of their child, in addition to her own. She is also rescheduling her work life along with her spouse, to actively care for the person who is suffering. As a result, she has no social life, along with cutting down on better growth opportunities at work… indefinitely. We may all plan our lives, but life’s learnings have other plans for us.

In spite of best hospitals and advanced medical care, we all have at some point of our lives cared for sick family members or relatives either for long term or short term or like my friend for an extended indefinite term. Unpaid contributions of family caregivers were valued at as much as US$450 billion in 2009 globally [1], and two thirds of these care givers were women with additional jobs outside home. Similarly, in India, the total unpaid contribution in health at home in 2010 by women was US$ 22 billion and by men US$ 5 billion (at a minimum wage rate). For the care seeker, family-based care is cheap, home based and in familiar surroundings. For the care giver, it will incur time management, resource mobilization (leaves at work, salary revisions) and sometimes (maybe often) mental hardship. But perhaps the biggest issue here is that no one tells, teaches or trains us of the right ways to take care of our own family members in times of need.

At a time when there is a definite shift in global disease profile from communicable (infectious diseases) to non- communicable diseases like diabetes, cancer or cardiovascular and injuries; family-based care can keep the healthy out of hospitals and those at risk out of sudden need of treatment (and sky high health expenses). Could family care be an integrated process just like sitting together and having tea in the family room in the evenings and politely reminding everyone of the daily medication schedules, quantity of medicine left for consumption in the house, doctor appointments, designated drivers or transport for the appointments etc? Could there be someone designated as the leader for providing this care within the family? How well would other family members accept this designated family health provider? Is there a possibility for this designated member to be trained in providing a first response to emergency care, identifying key symptoms, understanding when to reach out to a healthcare facility?

Both my maternal aunt and her husband were bedridden for long periods until their sad demise. My cousin took care of them, all alone though and it took its toll on him. But he had to learn a lot of ways through his life’s learning in palliative care- by observation, reading and talking to medical professionals within his community, to understand what was expected of him before he could chalk out a customized care system. I cannot say that anyone in my family of my parents, myself and my child is equipped at this moment to even identify symptoms that may lead to a near future health catastrophe at home, let alone what to do in case of an emergency. Like everything else in life, perhaps health of family members should not be left out to adhoc arrangements.

There are states in India where best practices, pilot projects and examples of successful family based care exist, however, unfortunately, health policies or even guidelines in primary healthcare systems omit this most important area of healthcare. If family and community-based healthcare is made stronger, and well connected with health facilities and medical practitioners, much of our health expenses could be reduced. In a country where the out of pocket expenses in healthcare are the highest in the world and families are pushed into poverty each day due to medical expenses, family-based care could perhaps help us in many ways. For one, knowing someone in the family is a designated care giver and formally trained (beyond google!) to respond during an emergency situation would help me sleep well!

[1] Ana Langer Women and Health: The key for sustainable development (2016). The Lancet Commissions, Vol386, September 19.


Neighborhood Engagement

The roads in my neighborhood are in a bad shape. For the last month, the municipality has been digging and filling and digging them again for revamping sanitation, kitchen gas and water pipelines. Working professionals in the neighborhood had to make alternate arrangements for transport since parking and plying cars was a great hassle (especially those with small children who had to get to school by 7:30am in the cold wintry mornings!). Small businesses such as vegetable, fish, fruit, houseware vendors bore the brunt too, as practically there was no movement through the neighborhood streets. There were no flyers or communication regarding what the municipal officials set out to do, how long it would take and how we could all cooperate. Hence, like many other decisions in the past, common citizens were once again expected to abide by adhoc policies and implementation procedures that someone somewhere may have designed, keeping the community in mind, but without minding to inform them.

Why do most government programmes fail? Why do citizens often associate well designed programmes with election gimmicks? Time and time again, I have seen the same in my work area of public health too. One big factor is the total closure of communication with beneficiaries -who ultimately define the success or failure of the entire programme!

Sometimes I wish we could borrow a few learnings from the marketing departments of commercial businesses. New products introduced in the market go through a rigorous process of research evidence, pilot testing, people engagement and proper canvassing. Although many a times these can be extended beyond reason for profit making, but without proper need assessment and participatory engagement, projects are on a downhill trajectory.

However, the present irritation in the neighborhoods has not been a bad experience so far. Through this process, I recognized a few neighbors with great potential in community engagement. A reclusive neighbor from the adjacent house came out with a flask containing tea, some paper tea cups and packets of cookies for the workers on our street. In India, daily wage earners mostly work in all construction/infrastructure projects. Men and women completing the physically challenging work of digging the dirty roads, could at least spend 5-10 minutes refreshing themselves with a hot cup of tea. Another neighbor led an active engagement with the workers. Asking them how long they would take, what utilities they were covering, and informing the neighborhood of the same. It was only through his information, that I could plan out my alternate transport schedule for the 4 weeks. One other proactive neighbor informed about the application forms for the new gas pipelines, without which, our house would have been surely left out from this initiative.

Although my neighborhood is covered in a mass of dust and people are constantly sneezing, coughing or both, and although we are on a make shift time plan, scampering around making last minute arrangements for keeping to our daily schedules, I am more or less happy to see that there are definitely some leaders in my neighborhood who act when the time comes with spontaneity and grace. While my contribution to the entire process may be limited to admiring them from my balcony and highlighting them on my minuscule blog or for voicing the lack of information at my neighborhood gossip sessions, the feeling of belonging to a community, of being part of a proactive neighborhood is motivating and cheerful.

Gender Views

We received a wedding invitation last week from our professional network. The invitation card mentioned the name of the groom (whom we know) and the bride to be. Her name is ‘Trophy’. Now I know, one can only imagine how she would have gone through school and college with that name, and also of the innumerable puns (intended) that would have surrounded her at all ages. However, I was thinking of the day she was born. She must have made her parents so happy and I can practically visualize the pride and delight her parents would have felt in holding her and showing her off….you know…like a prized possession (almost like Lion King!)

Though gender bias exists throughout the world as per scientific literature, I may be one of the fortunate few who is yet to document this from any practical experience. In fact, my family may be quite weird. I am an only child and all my uncles and aunts (5 of them) have only a single girl child. Maybe it’s a genetic predisposition, but we have been a very contended lot with a house full of women. Sometimes I do feel, we have sidelined the male population to a background in our family. We do include them in decision making processes, but just so they don’t feel left out (J).

It is however, extremely important to have different perspectives while making important decisions for the family like health choices, financial choices, education for children, marriage decisions, buying a home etc and a balanced view emerging from all family members irrespective of their sex is valuable. I also think children and adolescents make good decisions too and should not be undermined in the process. More than stressing on gender, I am of the view that each person is valuable and has a lot to contribute. The dynamics of power distribution will change when we start valuing each person, instead of attaching adage of male female, girls boys etc.

The fact is that my family may be part of a very small microcosm. I have women colleagues who have felt domination every day of their lives, I have male colleagues who are constantly overruled by their mothers while making family decisions with their wives for their children. Power has and will always lead human kind through all ages.

There are three delays in obtaining timely healthcare, type 1 delays are those made at the family level, where the decision that the ailing person in the family needs urgent healthcare in a timely manner can lead to survival or death of the person. Type 2 delays are often transportation or means to get to the closest healthcare and can depend on decisions, economic conditions etc of the family or surrounding community, terrain and accessibility in remote areas and the type 3 delays are adequate and timely healthcare provided to the patient in a healthcare facility. All three delays together or individually can lead to survival or death. Gender plays an important role in all these delays and is particularly crucial at the type 1 delay stage. There is a lot of research evidence that type 1 delay causes extensive bleeding at child birth in mothers who deliver at home, especially in low and middle income countries and together with type 2 delay causes the largest portion of maternal death. Same is true for neonatal deaths.

What are the barriers? Gender is only one of them; social, traditions, customs, faith, economics, illiteracy, ignorance make up the rest. What are the solutions? Education of every child, awareness of family and community, more participatory mechanisms to include women, men, community in government health schemes are a few answers, together with greater outreach of front-line health workers into urban and rural communities.  Often in Maternal and Children Health programmes, the men are sidelined, however, they should know the programmes and their views are as important as the women and mothers. Community empowerment and education of all will lead to better understanding of men and women in general and build stronger families. As part of a public health research organization, the best we can do is to include a equal gender lens in all our studies. To be inclusive and create projects that benefit everyone and don’t exclude men and/or boys. Health should be gender free, it is for and by all.



Mother’s day- How do we save our mothers?

We have recently celebrated the woman who has helped us cope with life not only during our childhood, but also adulthood. We showed our appreciation to the superwoman, who shields us from everything that could cause us pain, and sometimes, to our embarrassment and sometimes joy, tries to guard us even when we are supposed to have found our own footing in the big world outside home. She is universally revered across cultures, religions, countries or the n number of divisions we have made to segregate ourselves.

But something isn’t right. Why are our mothers dying and why haven’t we been able to curtail this, even in 2017?  Maternal death is a serious issue especially in developing countries. Although we have brought down global maternal mortality by 47% since the 90s, as per the World Health Organization (WHO), about 830 women die due to pregnancy/delivery related problems around the world each day. These are mostly preventable. 99% of these deaths occur in the developing countries.  The odds of a 15 year old dying due to pregnancy/delivery related issue in developed countries is 1 in 4,990. In the developing nations, it is 1 in 180. Sadly most of these deaths occur due to reasons that are within our control.

Severe blood loss during pregnancy and post delivery is the main reason, followed closely by infections. In most cases of severe hemorrhage, injections of Oxytocin are enough to slow down blood loss. The many reasons for maternal death are health inequities, aka, basic services are not available to those who cannot pay for care. Distance to the nearest health care facility, availability of medicines in the facility, inadequate services are also key reasons adding up to the issue. A UNICEF led project in 6 states in India based on verbal autopsy of family members and community members of mothers who had lost their lives during child delivery, showed that cost for transport to the nearest health facility, literacy level of the mother, community awareness were leading cause of maternal deaths.

Personally I find the lack of awareness and non adherence to hygienic practices during childbirth and subsequent death of mothers due to infections, is most unsettling. Sepsis is a major problem, both in maternal as well as neonatal death. These defy all norms for extent of negligence. Additionally, through our incessant use of antibiotics we have successfully created microbes which are now resistant to most drugs, hence can easily compromise an infected mother and her newborn.

The WHO has recently adopted a resolution on sepsis that urges member nations to be more cognizant regarding causes, prevention and treatment of sepsis and tighten policies and regulations of activities leading to Antimicrobial resistance (AMR), to develop AMR stewardship activities and strengthen hygienic practices, clean childbirth practices and improvement in sanitation and nutrition.

Some of the basic things that we could do at our levels would be to create awareness amongst everyone we come in contact with. Every time we visit a clinic or a hospital, we could inquire about guidelines followed in infection management, waste management and AMR. We could also remind the health practitioners about hand hygiene and seek their advice in ways to prevent infections at our homes.

Every family needs a mother and every mother deserves a good healthy life, especially one that can be met by a few prevention steps



Ship of Theseus


If a ship is replaced part by part up to a point where not a single original part remains in it, is it still the same ship?

This is a central theme of the philosophical paradox and has been reflected in the 2012 movie of the same name (which I happened to watch yesterday….yes I know, I am late by a mere 5 years!). The film depicts the journey of three people who have had an organ transplantation, cornea, liver and kidney respectively. I wish the filmmaker would have delved a bit more on how the transplantation changed the recipients. Especially since the corneal transplant was done on a blind woman who was a talented photographer and would rely on sounds to capture pictures, before the surgery. After the surgery, I wonder if there was a difference on how she would perceive photography, now that she had both sight and sound to rely on.

But on a deeper level, we have all gone through periods of breaking down, learning and then moving on in life. At each of these ‘episodes’ we have given up a part of ourselves as in our beliefs, and gained some qualities to face life, become stronger. So even if we may not remain our ‘original’ factory setting self, the constant learning, re-learning has made us the person we are. Hence, by the Theseus paradox, we may not be how we started, but we are still our own unique self.

I believe that life’s constant motion of shaping our thoughts takes us on our path to spiritualism and our higher selves; however, we have made a mess of everything with soul, re birth, immortality etc. in this mix.  It would be simpler to just focus on the process of creating and re creating ourselves and getting through life, while being ethical with our surroundings.

However, ethics for me can be different from for instance, the monk in the film, who would walk miles and miles without footwear so that he doesn’t hurt insects on his path. A part of the monk did change though, as he was shown advocating against using animals in research at the beginning of his story and finally made peace and went through a liver transplant and medication regime, to survive liver cirrhosis. Both transplant technology and pharmaceutical industry use research on animals at some point in their development, and that was something the monk had to come to terms with.

It’s very difficult to go through the metamorphosis of having our principles crumble and regain our strengths, but that is exactly what makes life interesting as well. And perhaps we should not tag it with whether it was the right thing to do or wrong, since it was for that moment in our lives, we chose the best thing for ourselves.

Anja and Hope

We are surrounded by it. No matter what steps we have taken, nationally, internationally, through government or through not for profit sectors, there has been no escape from it, nor will be for the next decade to come. Poverty will remain, so will the hunger in the emaciated bellies and eyes of little children and mothers will continue to weep, watching their conditions or abandon them out of sheer desperation and frustration of not being able to keep their promise to the little ones.


This picture is of a two year old Nigerian boy, abandoned by his family and of Anja Loven, a care worker. I am sure her profession would have presented her with many similar occasions to come in contact with undernourished and emaciated children. However, something about this particular boy was different. It’s the sixth sense we all have, of knowing that with a little care, sometimes, the cycle of life can be reversed.

Anja named him Hope, and she and her colleagues took care of the boy, sent him to a medical facility and helped him heal. Today Hope is better. One cannot distinguish him from other children his age (Pic 2).  It just took proper medical care and kind attention to reverse the child’s state within months. Anja’s plea over internet also allowed for 1 million USD in donations to take care of Hope’s expensive medical bills.

Instead of asking why there’s not enough being done for the many other little ones who need all our support, I would state that this beautiful story shows that one person can make a difference in one more person’s life. That’s all it takes. We don’t have to save the world, we can leave that to the others. What we can do is to help just one more life. Be it a human, a bird, a tree or an animal.


We do not have to provide monetary assistance always. A few students at my friend’s university campus got together to teach children of lesser salaried staff, during their free time. All it takes is time and a will to do something. The important thing is to make the effort. I am encouraged to see that the next generation of youngsters are immensely motivated and creative and moreover aware of their environment. They can design what’s best for the future of our country.

If we really cannot do much by ourselves, we should at least try and encourage those who are making a difference.