Caregivers also need to seek for care as well – Dr Ernestina Dankyi

Welcome to the Chronic Care Matters podcast, a conversation series of the Chronicity and Care in African Contexts Project.

Chronic Care Matters features conversations with individuals and caregivers with personal experiences of chronic illness, and with researchers, health professionals and advocates who are working with African communities on the continent and in the diaspora. We explore life stories, as well as themes like food, faith, medicine and the mind – tools we can use to prevent and manage chronic diseases, to care for ourselves and for loved ones who live with chronic diseases, and to support caregivers. Thanks for joining us.

In this month’s Researcher of the Month podcast, Syerramia Ohene (SO) chats with Dr Ernestina Dankyi (ED) to delve deep into how Africa can manage chronic illness with limited resources available.

Listen to the full podcast and read an excerpt from our conversation below.

Please note that this interview has been edited for clarity.

SO: How does your projects relates Chronicity and Care in African Contexts?

ED: t is simple. So, I would say that this project, chronicity and care in African contexts looking at individual journey, social journey of illness and care within an African context and I think that my research project, current work or my interest fits neatly into this because the very lives that these children live, you know they’re lives are characterized by chronic poverty, so poverty driving them out into the street and then they are living in poverty. The chronicity of poverty is with them, prevalent among them, and then the absence or lack of proper care structures to address these situations. So, for those of us sitting on the outside we can hardly see if we will ever get out of this chronic poverty and its accompanying challenge, with health being one of the major challenges that they have had to deal with on a daily basis. It is very difficult to see if you can transform their lives out of this so the chronicity of poverty and its challenges and the absence of care to deal with these challenges so their lives can transform makes this my research interest fit very neatly into the chronicity and care in an African context.

SO: And when we think of care, lots of times, I know certainly for myself most of the time I tend to think of care as just the care that you get from hospital or from medical professionals but there is actually so much more to it, isn’t there? There is you know the self-care, the care by a family member, or you know I guess spiritual care even and even I guess maybe the policies that governments make for care. And I was thinking, when I think about this project about street children, that must be very unique because these children must be missing out on that care from parents and having to self-care at quite an early age.

ED: Hmm, you are right! Spot on! When it comes to this population, care is very basic, you do not have it. I mean the level of care you can think about is what they give to each other, that one is perfect, I mean they rally around each other on the street, and some literature, some studies have said that children run to the street because of the solidarity and the friendship that they get on the street which they otherwise do not get from home or their wider community so the only level of care I could think about that exist for these population of children who are not living in households, they take care of each other and then I can think of the NGOs that are working very hard to help these children so that’s the only two levels of care. The ones they provide for themselves and these institutions or NGOs who have managed to reach some of these children and the care they provide. Any other thing from policy level to family and their immediate community, they are missing out on, they’re really bankrupt when it comes to that.

SO: So, Ernestina, what do you think are some of the major barriers to reducing our risk of NCDs?

ED: One that is of interest to me is a level of illiteracy, both general illiteracy and specific literacy or health literacy among majority of Ghanaians, particularly my population of interest, this is one of the major barriers because when people don’t even know what the risk factors are, how do they then even work on themselves at the personal level so if I know that the major risk factors has to do with unhealthy diet, physical inactivity, harmful use of alcohol or tobacco , if I know them, then I’m going to at the personal level begin to take care of myself or guard myself against them. But when I look at for instance the population that I work with, first of all they don’t know, they don’t have what it take to know, they don’t read, they can’t comprehend these things and then they don’t even know how to take care of themselves so on the personal level, this is a very huge barrier and when I talk again about my population of interest, these things that have been purported are known to be the major risk factors, this is their daily life, they don’t care what they eat because they eat what they find, there’s a wide amount of studies of misuse of substance and alcohol among these population because among other things, this is what they use to numb the everyday experiences of hardship that they have to go through, so they’re living it and then they don’t even know what the implications or what the end is going to be so how do you work to reduce this risk among such a significant segment of the population. So I think illiteracy and health literacy, for me is one of the major barriers that is hindering us from reducing NCD risk yeah.

SO: What advice would you give to a care giver?

ED: Care givers are such a soft topic for me when you mention them because they’re always giving out so much and they get so little in terms who is providing care for the care giver, so my advice to a care giver would be to seek giver, sometimes Care givers think they’re saving the world you know, they’re doing all the work by themselves and they don’t want to seek help from anybody and yet they do feel alone in what they’re doing and that doesn’t auger well for their own health and any other, they may not even know they have any conditions so I’d ask them to seek help. I would ask them if they can read and write, to try to understand the condition of their care recipients because the more you read and understand it the easier it becomes for you as a care giver who provides care, it reduces the surprises that jam at you. Err mm I’d also ask the care giver to take care of themselves first and one of the things I’d do is say, look for the people and the things you think can help you in this endeavor, I’ll help the person with simple mapping, who do you think can help you financially, who do you think can help you with the social support, coming to take care of the care recipients so you can breathe some fresh air somewhere? So I’m going to you do that mapping and I’ll tell you to make use of these before you find out that the care recipient is also in trouble because you’re no longer able to provide care, and I’ll ask them to also go checkup if they have any conditions themselves or they have developed anything in the process of giving care, so they’ll be able to take care of it as early as possible. That would be my advice to care giver or care givers who are providing long term chronic care.

SO: That’s a very practical advice. So, what lessons have you learned from doing NCD research Ernestina?

ED: I have learned the significance of multiple level of care, you know the self and community level care, institutional level care, and then the policies. I have learned that if these things do not work together, we will not get anywhere when it comes to addressing health care issues. For instance even with the health care system, if people are not taking care of themselves at the personal level, if they do not know what to do or they know what to do but refuse to do that so someone with type 2 diabetes (T2D) decides they are not going to eat or they are not going to take their medicine or they’re going to healer-shop, with all your best health care system in place, it’s not going to work out, we’re still going to have a high prevalence of people suffering from NCDs and vice versa so if you have an individual who’s conscious at the policy level for instance, or at the health care level where they go to access health care and the system doesn’t work then the person’s effort will be an effort in futility too

SO: Hmmm what is healer- shop?

ED: Healer-shop is seeking multiple healthcare services, you’re shopping from one healer to the other, so you go to the doctor, you think he’s being too slow or maybe you don’t have enough money, you go to the spiritualist, some start off from the spiritualist, then they go to the fetish priest then they go to the pharmaceutical shop, they’re poly consulting when it comes to their health and seeking health care.

SO: And so, they do not really give one particular type of treatment the opportunity to actually work.

ED: Exactly so when the thing gets out of control, you do not even know which of the solutions may have caused that, it becomes very difficult and then most of the time their conditions do not get any better and they go back to orthodox, and it is quite late because they spent all their time.

Listen to full interview here

Dr Ernestina Dankyi is a Research fellow at the Center for Social Policy Studies at the University of Ghana, Legon, Accra.

Thank you for listening to the Chronic Care Matters podcast. For more insights on Chronicity and Care in African Contexts, please visit our website and follow us on Instagram, LinkedIn and Twitter [at] Chronicity Care Africa. See you next time.


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