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From Rhetoric to Reality – Community Dialoguing & Engagement

By Shakira Choonara
on September 8, 2017

You may think I haven’t gotten with the times i.e. not coming up (yet) here with deep reflections  on the Health Systems Global 2018 theme (advancing health systems for all in the SDG era), but instead, being honest, that before we even get there we can’t move on from the 2014 focus in Cape Town  – people- centred health systems. Not just, anyway! I have always been of the view that too often, in our different roles as either researchers or practitioners we tend to be extremely far removed from the people we are meant to be serving i.e. patients, the patient experience and the patient reality! A recent experience didn’t exactly change my stance.

I was invited to facilitate a community dialogue in a poorly developed community in South Africa – for those who have been here before it’s about a 20-minute drive from Johannesburg, so not too far from the economic hub.  Being oh so “young” this was my first experience actually engaging community members on their healthcare experiences. Now in preparation, if you google “community dialogues for health”, a ton of handbooks come up, including one I particularly enjoyed by the Malaria Consortium, titled, “Learning paper: Community dialogues for healthy children encouraging communities to talk”. But I am not so sure that the panelists took the time to google, let alone get the drift of what community engagement rhetoric actually means.

Panelists ranged from senior managers in SA’s Department of Health, advocacy officers among leading civil society groups to community activists and clinic staff who serve the community. The majority of panelists literally showed up with PowerPoint presentations, with complicated graphs, speaking a jargon only they understood, and I quote, “PHC access is increasing according to this graph, can anyone tell me why”? The room was completely silent (in “shock and awe” presumably ) and continued to be that way, as key stakeholders from the Department of Health rattled off, “UHC, NHI (National Health Insurance), CHWs, environmental practitioners, clinic committees (supposed – community governance structures at health facilities), …”.

Not sure if they thought they were at an academic conference (no offense) but individuals either below fifteen years of age or well above the age of 80 were definitely not engaged. Except of course when the community activist stood up, spoke from the heart and captured their attention (much to learn from activists!).  Just from observing the likes of possibly the greatest facilitator of all time, Simon Maxwell, I learnt the art of facilitation is to truly engage the audience.  With little choice other than hoping for a power outage to stop the PowerPoint torture, being the (assigned) facilitator I had to salvage the situation and bring panelists (no matter how high, dry  or mighty they were) back to the point and purpose of a community dialogue. A dialogue that was so important on many fronts, especially on understanding patient experiences which we need to read, listen to, remember and reflect on constantly. A few quotes are telling enough:

  • Community member 1: “I am not sure about the paper based systems, every time I go to the clinic/ hospital I have to wait hours and open a new file, every single time.”
  • Community member 2: “I can’t go to the clinic which is so near to my home because they often don’t allow my son to park in the disabled parking, you can see I am disabled, the security can too but he won’t allow it. So we often have to drive to another hospital, which makes provision for disabled parking”.
  • Community member 3: “There is no confidentiality at the clinic, they shout at you, “here are your antiretrovirals (ARVs)”, so everyone knows you have HIV, there is no respect”.
  • Community member 4: “I used to have to spend a whole day to go to the hospital for my medications, I would go monthly, but I have no one and now I am too sick to go so I am not even taking my medication at the moment”.

Community member 4 somehow touched my heart, a beautiful but old and frail women, literally all alone facing a multitude of access barriers. For me, she was finally putting a face to what we mean when we talk about vulnerable populations, particularly the elderly. Somehow I decided to reach out to her, (yes in the middle of the facilitation), while one of the panelists was rambling on about some policy or the other. She requested that I help her up and pack her some sandwiches. But the human side of me knew I had to do more somehow, I gave her my business card and tears rolled down her face, and I fought back tears too. It’s an experience etched in my memory of how the majority of our health systems face the challenge of caring for an ever-growing elderly population.

I certainly learnt some profound lessons from this experience. When we discuss people-centred care, reach out, try to understand communities, understand each patient, listen to the patients’ voices, patients’ experiences, demands, … we need to ask the question of how to change such realities for the better.  Both at “community dialogues” and, even more importantly, in the everyday reality of our health systems.

 

 

*Opinions expressed are not necessarily that of the Southern African AIDS Trust but of the author

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