Action through Participation

As a Research Administrator, my responsibilities include assisting faculty members make grant applications in Public Health research areas and coordinating capacity building workshops for early career researchers in grants writing and manuscript drafting. At one point in my career, it was but natural to pine for a deeper understanding of ‘field work’ to add value to the documents I would prepare. An opportunity to visit two ‘field sites’ to document successful best practices came through and I was happy to commit to them instantly. The first was to document record keeping by front line health workers in Eastern India. The second was to document health promotion in community settings in Western India. Both required engaging with health workers and community in equal measure. Both broadened my thinking and understanding beyond all the research papers and reports I had read.

One of the field site was a small dingy room without a window. About 30 women sat in the room, some mothers, some daughters, some newly weds and some with infants, all cheerful, oblivious to the dark interiors. A henna competition was on, to gauge whose henna bedecked palms were the best in terms of design and colour. Before prizes were announced, the women were asked to speak on what their dream was about their daughters. The henna competition had broken their inhibition and now they all spoke up. One woman said she wanted her daughter to be healthy, one said education and going to school was important, another spoke about financial independence. But they all spoke, and not about challenges they and their daughters face every day, not about the resource limited households they had to go back to, but about their dreams and aspirations for their next generation.

It was then that the Project Manager told the women about family planning methods, about how spacing between children was one way to keep both the mother and her children healthy, about discussing family planning options with their husbands and families and reaching out for resources and medical assistance in the nearby locality, in case they needed further advise.  What I was observing was a participatory action or engagement, where the community is an active lead for any intervention being planned for them. The Project Manager was part of a larger project involving community, private and public medical practitioners and health centers. He was not an MD or a PhD, but was highly skilled in community engagements. There was a level of comfort that he demonstrated especially while handling a taboo subject like family planning methods with women from a very conservative section of the society. Later on he told us that it was important for him to understand what the community wanted first, before he aligned it with what he wanted to tell them about his project.

Six months later, I had an opportunity of being involved with a group of researchers planning to conduct a study on immunization coverage in Eastern India through community intervention. The Intervention specialists, began with a question for the community. Once again the question was about their dreams and aspirations. As per their experience, for any community intervention to be sustainable, it was important to have the community participate in the study, not as a recipient, but equal in status as the researcher conducting the study. Most often, community interventions require social and behavior changes to have positive outcomes and this can be achieved when the community believes that there are substantial gains from the study which align perfectly with roadmaps to their dreams.

In one of our institutional projects on rain water harvesting and storage in several villages, it was seen that when the community participated as equals, there was substantial ownership. At the end of the project, when the research project team pulled out of the community, the residents took up a mechanism to pool in resources and maintain the structures built and the processes for water regulation, as a regular mechanism. The project was renamed as ‘Aapno Yojana’ meaning ‘our/my project’.

Additionally, cultural contexts are often overlooked while designing community interventions. In a country like India, where each region is different from the other, be it in language, religion, tradition, beliefs etc, one intervention will not be replicable in another setting. Participation from the community in devising intervention strategies not only provide ways to conduct the intervention, but also help drawing out indigenous solutions in resource sharing in resource limited countries.

Participatory Action Research can be valuable in sustainable community interventions. Some of the methods use a lot of listening and then devising an intervention plan along with the community. What is required is a strong monitoring and evaluation component to measure progress at every step. The cons include

• Ethics- Both the researcher and the community have to believe that the intervention will benefit the community. While aligning the community’s goals with research objectives, there should not be a forcing on or manipulation to align research objectives leading to coercion.
• Choosing community leaders- especially in projects where community is required to openly discuss topics that lead to behavior change, often a few representatives from the community are first addressed who then in turn become a relay team of informing others in the community regarding the intervention. Sometimes, these leaders can become quite dominating and forceful with their ideas and thoughts. In order to maintain balance, adequate monitoring and constant dialogue with the leading team and the community is required.
• Not connecting with appropriate stakeholders- in addition to the community, the local health governance members have to be a part of the project. Once the project is completed, they would be required to continue to administer, monitor and guide the community.
• No linkages with national/ state programmes/resource agencies- In order to be sustainable, the community intervention has to have linkages with ongoing national, state programmes. The project team should also be able to forge linkages with resource people who can be sought locally, like front line health workers, medical practitioners, hospitals, healthcare centers, diagnostic agencies and pharmacies. This would be valuable when the project is completed and the community still has people to reach out to.

In case of community interventions where participatory action cannot be utilized, appropriate ways to conduct research dissemination should be explored. Often research dissemination is done at a higher level, involving government functionaries, policy makers, research groups. The people who would benefit most, the community is not informed regarding the research results. Importantly, changes are being driven by some funding agencies who advise for strong dissemination components at proposal stage itself. Medical research involving drug and patient trial results are often not shared due to ethical factors. However, there are many public health research projects where dissemination mechanisms are not explored adequately. As a result, public health research is still conducted in silo and shut down in large cumbersome reports that are not accessible for wider reading.

A few interesting examples of participatory community interventions using different methods are-

• The Maternal and Perinatal Death Surveillance and Response[1] project initiated by the Ministry of Health and Family Welfare in Bangladesh, which helped make substantial improvements in maternal death indicator. During open discussions with the community on maternal death at childbirth, the project team realized that excessive bleeding during delivery and delay in seeking appropriate medical care, delay in accessing appropriate transport to the nearest hospital, caused an increase in maternal deaths. Interventions were created to address these issues followed by policy level changes that led to better indicators.
• Community Photovoice project[2], where community members took photos or wrote and spoke stories regarding barriers and promoters of eye care in rural India. Their voice identified a few key barriers such as alcoholism, unregulated blood sugar and hypertension. These can now be adequately addressed by strengthening the healthcare fabric within the locality.
• Participatory Women’s group addressing maternal and child health[3]– front line health workers used participatory methods to prioritize neonatal and maternal health issues amongst a women’s group that in turn spread the information amongst women through implementation projects that they themselves assessed.
• Developing smoke free homes in Kerala[4]– Pilot studies suggested that Community participatory action helped substantially reduce second hand smoking in homes. Interestingly, the study showed that husbands, who did not stop smoking on request of their wives, did so when the community together aimed at a ‘smoke free home’ drive.

It is also important for Public Health researchers to obtain information regarding various successful participatory action research methods that have been tried and tested.  A compilation of literature on various approaches to participatory action research is required. This would help researchers understand the implications of community participation and then to design intervention plans that have potential to be scaled up. Perhaps all the major funding agencies working with communities could come forward to collate information on their successful community intervention projects, at one place. Or perhaps scientific publication houses could bring out commissioned papers in this direction.

At a time when Public Health research funding is slumping across the world, it would benefit to test out different methods of participatory action that have scalability and sustainability while being minimally resource intensive. In developing countries where population numbers are high, people are the true strength and the only resource. Bringing them together, learning from them and linking them to the local resources available should be the primary objective of the researcher involved in designing community interventions. Participatory Action Research can help bridge the gap between people and the Sustainable Development Goals we have set for ourselves to a great degree. As researchers, we have to merely facilitate this connection.

 

[1] Biswas, A., Rahman, F., Eriksson, C. and Dalal, K. (2014) Community Notification of Maternal, Neonatal

Deaths and Still Births in Maternal and Neonatal Death Review (MNDR) System: Experiences in Bangladesh. Health, 6,

2218-2226. http://dx.doi.org/10.4236/health.2014.616257

[2] Rani PK. et. al. (2017) Envisioning eye care from a rural perspective: A photovoice project from India. Int.Q.Community Health Educ. doi: 10.1177/0272684X17736153

[3] Tripathy, P. et. al. (2016) Effect of participatory women’s groups facilitated by ASHAs on birth outcomes in rural eastern India: a cluster-randomised controlled trial. The Lancet Global Health, Vol 4, No.2, e119-128. DOI: http://dx.doi.org/10.1016/S2214-109X(15)00287-9

[4] Nichter M. et.al. (2015) Developing a smoke free homes initiative in Kerala, India. BMC Public Health. 15:480. doi:  10.1186/s12889-015-1815-1

Strength of Prayer, of wanting nothing

When I was sixteen years old, I traveled on my own on a train for 2 days to see my relatives in another city. Even though I grew up in a very protective environment, my parents did give me the independence to discover myself from time to time. And although my parents called every day during that particular trip and came to take me home after two weeks of what was originally planned to be a full month of ‘independent’ vacation; at the end, I did get to stay with all my cousins for a good enough time and had a great summer that year.

On that train journey when I was greatly enjoying being on my own, I chatted up with some of my co passengers. It was the age of bewilderment and innocence. Not even for a moment did I feel nervous about talking with total strangers. I remember some of them bought me snacks and tea and I accepted gratefully. If it was today, I would have thought multiple times about accepting things from strangers. I have also killed the innocent urge to strike up conversations with people I don’t know.

On this trip for at least a part of the journey; one of my co passenger was a young yogi who would probably be in his early twenties. He had a pointed beard and knotted his hair on top of his head in a bun. He wore orange garments, sat straight and had ear phones in both ears. He would open his eyes from time to time and look outside the window, not to gaze at anything particularly but probably to add meaning to whatever he was listening. At some point, we had started talking. He was on his way to North India to help people devastated by a recent flood. He worked with Bharat Sevashram and seemed very happy with his life.

We were talking about God and divine presence and he had asked me if I prayed. I have never been overtly religious. My parents are practicing Hindus, actually quite orthodox, but have never forced me to abide by or follow any practice. As a result, my faith has been an evolution, metamorphosing over the years with my own life’s experiences, changing with my perceptions of the divine. At sixteen, I had laughed and told the Yogi that I prayed before exam results came out. He had asked me not to request for anything the next time I prayed.

I had been amused, how could one not ask for anything while praying. Wasn’t this the sole purpose of believing in a greater presence, of having an assurance that the most powerful can fulfill every need?

I did not understand him then, but now, over time, I have realized how powerful it is to pray and not ask, but thank. I find a deep peace in my daily prayers and praying for others. It has allowed me to overcome the biggest obstacle in my own life; my own self. One does not have to follow any religion to pray. You could think of the universe, the strength of the cosmos as being the most powerful and pray keeping that strength in mind. It is wonderfully satisfying to think of oneself as the tiniest dot amongst the vastness and that one doesn’t have control over everything.

Like many conundrums in my life, I am a partial atheist. An unusual believer. I did study science, but have never felt a need to give up my faith in both the divine and in science. Cant they co exist? I understand how Darwin would have felt, while learning to be a clergyman and discovering that evolution was the key to life forms. However, he may have been an unusual believer himself.

Like my parents, I do not expect my daughter to practice any particular faith, however, I do not think I could bear the thought of her traveling on her own, away from home, not at sixteen and perhaps not even at twenty!

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.

One health- isn’t it a bit late for that?

While discussing a school assignment on different birds with my second grader, we watched videos of humming bird drawing out honey from flowers and weaver birds weaving artful nests. I also told her about the first time I had seen green pigeons. A pair of these green birds had made a nest close to my window and I had watched over them for a couple of months, till two young little birds were added on their family and then the four had flown away together… on their onward journey. There is something satisfying in bird watching and the way they conduct themselves. Unlike any other member of the animal kingdom, birds are perhaps the most sober and dignified and sometimes great entertainment!

The assignment also had a question regarding which birds had her parents seen when they were young and were rarely seen nowadays. When I was growing up in my grandmother’s house, we were often surrounded by sparrows and sometimes a couple of cawing crows. I don’t see sparrows anymore, especially in the cities I have lived as an adult. I tried finding some data on sparrows, unfortunately there is not a lot of research done on them. Their numbers are low and the ones who made it have migrated to greener, less polluted suburbs and villages. Two things caught my eye in the past week. The term ‘one health’ which really means to have everyone who deals with human, animal and environment health on one platform. Since 60% of diseases in man have some sort of origin in animals and since in turn, man has contributed to effectively denude the environment off more than 60% of its resources, now man has decided that we should all work together if we are to save ourselves from animals and the depleting environment. This is the big health jargon of 2017 that will be used over and over on all research applications, debates and talks this year and perhaps till we move on to something more ‘in’.

The CDC page on One Health, mentions “One health recognizes that the health of people is connected to the health of animals and the environment (www.cdc.gov/onehealth/)”. Isn’t it funny that it took us till 2017 to recognize that our health is connected to other beings around us? The real reason is perhaps that as researchers, we have all built our silos of working with our own folks with our own perceptions, like a medical professional may not be seen as a talented basic researcher, a  PhD is seen to be focused only on their bench work and not understand diseases, and veterinarians, well they have been completely dismissed from participating in any ‘serious research’ related platforms. As researchers, we have let our insecurities and sometimes dire selfishness keep us from sharing our results, collaborating and even talking openly about our interesting findings. When we cannot build bridges across our own fraternity, how will we come together on an unified ‘one health’ platform and work together to better our environment?

And why veterinarians alone? We should also partner with anthropologists who learn from living with communities who are closer to nature. The indigenous tribesmen of any country have been practicing living in harmony with nature for as long as the human civilization. We should perhaps seek our ‘one health’ answers from them.

The other item that I found interesting was that telomeres seem to grow longer in space. Isn’t it interesting that telomere which dictate ageing in an individual, grow longer in space? Was the incident a one off, or was it due to space being untouched by pollution, untouched by man as yet? Anyways, since we haven’t been able to find another earth to call our home yet, we should like our own spiritual growth, ‘look inwards’.

Would one health change our perceptions about working with each other for a better world?….only time will tell. Till then, I hope someone somewhere works on sparrows and  brings them back to my neighborhood!

 

 

Life’s ironies

We plan for our futures with great care and patience, and then life decides to host its own entertainment show. I am not indicating the small hindrances, that take us off route by a small distance, but those that take a life time to come to terms with and at the end, still leave us unsure.
Take for instance Charles Darwin (sorry if those of you who know me exclaim here she goes again! But that man himself, was the biggest, most complex experiment ever on this planet). Here was a man on his way to become a clergyman, sailing on a boat to perhaps the most beautiful island on earth, and the last thing he had was a vacation through life!

What would I have done, if my profession was to preach the almighty’s attention to detail for each and every organism and which was personally handcrafted and bam! all I ended up doing was to collect evidence that there was no customized handcrafting and tender supervision, but species arose from outdoing themselves on an intense competitive race to survival. Before, I could even begin to devise logical arguments for others to accept my new theories, the first roadblock would be to convince myself about how my beliefs and conventions would shape up when all my years and years of thought processes would slowly have to make space for new, extreme ones.
If I were to meet him today, I would be very interested to know Darwin’s thoughts on religion more than his exciting voyages and well documented facts on evolution. However, from the historian’s accounts, it appears that he may have chosen a path that took him to a direction of evidence based research and spirituality at the same time, like a middle ground. That he had a sensitive and almost kind view of the almighty is reflected in his bitterness for the wasp that paralyzes caterpillars for nourishing its own eggs, the selfish act that Darwin indicated, cannot be an act of god.
There is nothing wrong in walking the mid path. We are free to believe in what makes us work and if being spiritual only nudges us towards the truth around us, so be it. Darwin never thought of himself as an atheist, although, towards the later part of his life, could not describe himself with certainty when it came to religious beliefs. It probably doesn’t matter. His contribution to science will continue to awe and inspire till there’s life on our planet. In spite of all odds, Darwin followed his passion. His drive to truly understand  natural scientific processes around him and more importantly elucidate his understanding of them, mattered more to him than anything else.

Many of us have and many of us will be faced with challenges such as these (but yes, there will be only ONE Darwin… at least for me!). However, we do not have to completely give up on our resident belief systems to accommodate space for the new ones.  Instead, we probably need to harmonize and create a path to seek whatever drives our hearts, instead of making a choice and not believing in that completely.

On his journey, Darwin did find compassionate and patient company around him, who may not have completely agreed with his thinking, nor understood them. However, they did support him as a person in providing him the strength he needed to seek his truth. Maybe that is the support we all need and seek, the patience to fit us all in, irrespective of our beliefs.
Alright, enough of preaching, but here’s a list of online goodies if you are interested to read more on….ahem…Darwin-

https://en.wikipedia.org/wiki/Religious_views_of_Charles_Darwin
https://www.youtube.com/watch?v=MCOc7Xqj-kQ
http://darwin-online.org.uk/EditorialIntroductions/Freeman_OntheOriginofSpecies.html
http://www.bbc.co.uk/radio4/darwin/inourtime.shtml
(Books-  Darwin: The life of a tormented evolutionist, Adrian Desmond and James Moore;  The autobiography of Charles Darwin, Charles Darwin , editor Nora Barlow)