Part 3: “Routines are really important”

 

Written by Leigh-Ann Richards, Occupational Therapist

Leigh-Ann Richards is a Senior Clinical Educator in the Department of Health and Rehabilitation Sciences in the Faculty of Health Sciences, Occupational Therapy Division. 

In this three-part blog series, we hear from Leigh- Ann Richards, an occupational therapist, who has been working in both a professional and personal capacity with patients and older persons. She writes about the complexities and work involved in managing medications. Her thoughts and observations are based on her experience working with patients at multiple levels in the health system, and in people’s homes as well as her own personal experience of caring for her elderly parents.

The last point I wanted to raise about medication is actually taking it. You do get some people who believe that they need to eat a meal before they take the medication. But sometimes your medication needs to be taken very early in the morning, let’s say 6 or 8 o’clock, maybe you are not up yet. It is not necessarily a full meal, even if you can just have 3 tablespoons of yoghurt or half a slice of bread, quickly pop it in your mouth. The point is just to get the medication into your body, you don’t need to wait until you have prepared yourself a breakfast or lunch or supper. This is because sometimes that gets delayed and the risk of not taking the medication outweighs the risk of not having something in your tummy.

Do not be too preoccupied with ensuring that you have to first make yourself a meal before taking medication. Just pop something, swallow it, just have something in your tummy before you swallow your pills. But take the pills and if, you know you have to do a little bit of maths here, if a day is 24 hours and the tablet says 2 times a day, you need to go 24 divided by 2 which means that your tablets need to be taken 12 hours apart, so you cannot take your tablet at 10 o’clock and then again at 4 o’clock, because that is not enough time between each dosage. If your tablets need to be taken 3 time a day, you go 24 divided by 3 equals 8 which means you need to have 8-hour intervals between each dosage. This is important to know because what this means is that you need to rethink about your daily routine in order to match your medication routine.

So, for example, if you normally used to wake up at 10 o’clock that is not an option anymore, you might need to wake up a little bit earlier put a tablespoon of yoghurt in your mouth or put a Pro-vita biscuit in your mouth, something/anything, take the tablet and go back to sleep. You are going to have to choose your 8-hour intervals or your 12-hour intervals or sometimes tablets need to be taken 4 time a day, so that is 24 divided by 4 equals 6. Which means you need 6-hour intervals, it can get complicated but try to establish a routine in your life. When I say routine, I am talking about getting done in the morning, getting dressed, doing your little light chores, getting the house ready for the day, when you will take a nap if you will and when you will sleep at night. Try to match your daily routine with your medication or make sure vice versa, your medication matches your daily routine.

This makes it much easier for you to remember because what often happens is that you now get stuck into doing something. Maybe let’s say today you decided to clean the windows and suddenly now its 4 o’clock and you were supposed to take your medication at 12. You don’t want things like that to happen, so if you are going to clean windows check when your next dose of medication is and make sure you do your windows in between the dosage times. I know it sounds really like an effort but the moment you start matching your medication routine with your life routine the chances of you being compliant with your medication is so much higher. It takes the thinking and remembering out of your brain because it will become part of your daily life.

As a caregiver it is really important for you to get your loved one or your patient into a routine as soon as possible. It takes 3 weeks to get a person into a routine so that it becomes so natural and so normal, nobody needs to think about it anymore. Routines are really important not only for medication but its important…yeah maybe I’ll make a whole theory around the importance routines, value of routines and habits but just in terms of medication having that routine will help you as a caregiver because you will not have to remember something extra but it also helps the patient or your loved one be more compliant in taking their medication because it will become just a habit, an ordinary thing, it will no longer be an event.

The last thing in terms of taking the medication, you know this is just a little weird little tip I learnt with my father, you know tablets come in different shapes and sizes and we used to go take the big ones first and take the little ones at the end, but you know it really doesn’t matter which order you take the medication, the pharmacist and doctors don’t care, it doesn’t matter in your body. But in terms of you know psychologically, sometimes its just better to get the big ones out of the way and if they are too big just one at a time. Then the little ones if they are small enough you can actually take 5 of them at the same time. You know there is no need for you if you have 11 tablets, for you to be putting 11 tablets, swallowing 11 times that is very tedious and time consuming and can sometimes get very nauseous from it so just get the big ones out of the way, just one at a time, then the little ones cluster them together into maybe 3 or 4 and just pop it into the mouth.

So, when it comes to taking the medication, its obviously best to take it with water but you know sometimes if a sandwich and tea is part of the normal routine then let the tea just cool down and take the tablets with the last half of the cup of tea, that is also fine.

One last tip I have, and this is for folks who are a bit tech savvy and have access to a phone and can manage to set an alarm on their phone for the same time every day. On your clock on your phone, you go to alarm, and you can label it ‘Take your medication’ and I just set it for the same time every day. It is really helpful as the phone goes off, it forces the caregiver or care receiver to look at the phone and it says, ‘Take your medication’.

Like I said I am not a pharmacist, but this is just in terms of being a caregiver for my dad and also what I have recommended to families in the past.

Part 2: “The pill box and the non-negotiable meds”

 

Written by Leigh-Ann Richards, Occupational Therapist

Leigh-Ann Richards is a Senior Clinical Educator in the Department of Health and Rehabilitation Sciences in the Faculty of Health Sciences, Occupational Therapy Division. 

In this three-part blog series, we hear from Leigh- Ann Richards, an occupational therapist, who has been working in both a professional and personal capacity with patients and older persons. She writes about the complexities and work involved in managing medications. Her thoughts and observations are based on her experience working with patients at multiple levels in the health system, and in people’s homes as well as her own personal experience of caring for her elderly parents.

 

When it comes to medication there are quite a few points you should be aware of. The one is sometimes the ingredients inside the medication have got a different name to the name of the medication on the box or on the packet. So, the ingredient name will never change but the name of the medication might change. For example, you might find medication that the ingredient is paracetamol, so paracetamol is the ingredient, but the name might look different. You might have a name like Tylenol, Panado or Block Pain; it comes in different names. That is important to know, and as a pharmacist they will obviously know all of this information, but just be aware of that. You might go to one facility, and they might give you Panado and you might go to another facility, and they give you Tylenol. Please do not think it is a different medication, it is the same medication, has the same ingredient but just has a different name.

Another point is that you get things called original medication, I think that is the right word and then you get generics. Generics are exactly the same as originals, they just have a different name and made by a different company. So, don’t be fearful if a pharmacist says to you, “would you like the generic?”. Generic medication has the same ingredients and is often a little bit more affordable than the original medication.

The next point is taking note of your medication. In this little book that I spoke about earlier on, this is where you the first thing I said is you ask what your diagnosis is and the second thing you need to know is what is the medication that I need to take.

Now pharmacists and doctors, they have a really secret language that they use, they use numbers and letters and all sorts of things. It is often very difficult to understand their writing so in your book this is where you need to ask the professional in front of you the name of your medication, how often must I take it and how many must I take. Sometimes different medications have different forms, sometimes the doctor may say you need 5 milligrams and that will come in one tablet, maybe the doctor says you need 15 milligrams and that may be 2 and a half tablets. So, all of these things you need to ask, and you need to put it down in your book.

Another point to consider when it comes to medication is to think about what the things are I need to put in place to make sure I can take my medication at the right time, the right amount on a daily basis. A wonderful way in which to do this is to get a little pill box. You get pill boxes in all different shapes and sizes. You get ones that are Monday to Sunday, just one square; you get ones that are Monday to Sunday, a square in the morning and a square in the afternoon. You even get one that come in a huge box like an A4 page where it’s got 30 squares, one for each day and so on and so forth. You can find these everywhere, Clicks, PicknPay, Osmans, China Town, anywhere and they are quite helpful. If you are able to manage your medication on your own, you are able to remember and understand your medication, its unlikely that you will forget to take it.

But if you are taking more than 5 medications per day, I would recommend that you actually see if you can access a service where a professional pharmacist assistant will actually pre-pack your medication for you. Because some medication must be taken in the morning and some in the afternoon and some must be taken at night, you cannot change this. So, it is really important if you can access a service where your medication can be pre-packed. I know that there are some pharmacies that offer this service, it is something that you have to pay for. I know Dischem charges R130 a month and the pharmacy assistant will pre-pack your medication for you and they will actually deliver it to your house once a week. It is very easy to set up, the pharmacist gives you a reference number, the bank details of the Dischem pharmacy and you just need to pay the money upfront, then once a week your medication will be delivered to your door for R130.

For a lot of people that is unaffordable so if you are going to go the other route of managing your own medication, I strongly advise that you use the information you got from the doctor in that book and you study it very closely and make sure you put the right pill in your little container. This is so that you make sure you take the right tablet at the right time, with the right amount of tablets on a daily basis. Another point to consider is that if you don’t have a very good understanding of medication, it can get quite scary when you maybe for some reason you miss a tablet. It is really important that when you have a conversation with your doctor for them to explain to you what each tablet is for. It is important to know this because there are some tablets where it is non-negotiable, it has to be taken every single day at the same time. But there are medications that you can give or take 6 hours or so and so you want to know which tablets are, you know if you took it late it is not going to be a big deal, you are going to get the next dosage the next day. You want to know which tablets you must make a little star next to so that you know that these are non-negotiable, and you cannot miss this dosage.

It is those type of things that really help and make it easier for you to manage at home because sometimes, I know for example with my father, there are some medications that we missed and we were panicking and the doctor said to us don’t stress, even if you skip a day, it is not a big deal. It is important to know upfront the non-negotiable meds that cannot be missed and the ones where there is a little bit of leeway if you miss it. Because life happens, we cannot always remember to do the same thing at the same time. I also know of some public facilities, clinics or day hospitals where they also offer a pre-pack service. I know during Covid they used to deliver to people’s doors, I don’t think that is happening anymore. But I do know there is some sort of service where you don’t have to stand in a normal que, you can actually go straight to the pharmacist, and they have the pre-pack for you ready to just pick-up and go.

So, find out from your local clinic or day hospital what type of services they offer in terms of managing chronic medication, and write it down in your book. Another point is that when you go for checkups with your doctor, your doctor will typically take your blood pressure, maybe your glucose, maybe cholesterol whatever tests they are going to do, and the doctor might come to a decision to adjust your medication and now this is where your book is very important. Because adjusting medication there is often miscommunication between the doctor and the pharmacist, and your book is going to be the thing that could possibly clarify miscommunication. For example, if you were taking 5 milligrams but now the doctor wants to give you 7,5 milligrams and maybe the doctor says you know what I don’t want you to be taking 7,5 milligrams for 6 months, I want to try it out for 2 weeks and doctors often do this, and this is a nightmare for caregivers.

Yeah, so you try it out for 2 weeks but your chronic script says 5 milligrams for 6 months, so what is then helpful is if you put this in your book and when you go and collect your meds in the pharmacy you explain that this is a temporary try out of 7,5 milligrams that you will be reporting back to the doctor to see how it affected you or how it helped and then the doctor will make the final decision whether to stick to 5 milligrams or 7,5 going forward.

Part 1: “The Notebook -What is my diagnosis?”

 

Written by Leigh-Ann Richards, Occupational Therapist

Leigh-Ann Richards is a Senior Clinical Educator in the Department of Health and Rehabilitation Sciences in the Faculty of Health Sciences, Occupational Therapy Division. 

In this three-part blog series, we hear from Leigh- Ann Richards, an occupational therapist, who has been working in both a professional and personal capacity with patients and older persons. She writes about the complexities and work involved in managing medications. Her thoughts and observations are based on her experience working with patients at multiple levels in the health system, and in people’s homes as well as her own personal experience of caring for her elderly parents.

 

So, the first thing when it comes to managing medication is, you need to have an understanding of what your diagnosis is, and this is really important. A lot of doctors don’t put in the time to explain to patients what they’ve been diagnosed with and so sometimes when you are in the doctor’s office you can get flustered because you have been waiting in the waiting room. You might be just overwhelmed with all the things you’ve had to do before you get in the room, so it becomes really easy to be overwhelmed and not remember everything that someone is saying.

The first thing you need to do when you are accessing health care is to buy an A4 little notebook and pen. Take those with you into the room. I would actually say just record the conversation between you and your doctor if you have got a cell phone and a video recorder function but I know a lot of doctors would be very adverse to that and they won’t be happy with that. But there is nothing wrong and you are within your right to take with you a little book and pen. The first thing you need to write in that page, is you need to ask the doctor “What is my diagnosis?”. This is important not only for you to know as a patient, it is your body and you have a right to know what impairment you have, but it is also important when you are interacting with other health professionals.

Maybe you get referred to the physio, OT or a social worker, a pharmacist or any other health professional. It is really important for you to be able to tell them confidently what your diagnosis is. And then in this little book, whenever you are interacting with any health professional, start a fresh page, put the date on top, put the name of the health professional this is important. You have a right to ask the person: “What is your name and surname?”. Sometimes especially when it comes to public health facilities, no one knows the doctors name, and this is really important information for other professionals because when you come to us after you have been referred that is what we need to know. We need to know the doctors’ name; we need to know your diagnosis and we need to have a telephone number or at least the name of the facility. Because then at least when we need to go and find out more information quickly, we can look up the facility, get the doctor and ask on the phone “please can you get me through to Dr Brown”, or whatever.

This notebook is really important to have, as a family make sure you keep that notebook safe. If you are not able to write you are within your right to ask the doctor, “please can you write down what you are telling me in my own notebook”, the doctor will of course have to do their own record keeping in the pink folder or whatever colour the folder is in the facility. But you are within your right to ask the doctor. This is especially if there is a language barrier, you are allowed to ask the doctor what your diagnosis is, what is their name and what is the name of the facility that you are in, that is a really important starting point.

The reason why this little notebook is so important is because, unfortunately, records sometimes get lost in hospitals, so this is almost like you helping all the health professionals that you are seeing to keep them connected. Because often what happens is that you go to one health professional, they say one thing and you go to the other they say something else, and it really gets confusing. It is really difficult for records to be transferred because some facilities still work on paper and some work with electronics, on the computer. So, your little notebook is really the one thing that helps your health professionals and maybe not even health professionals, to have a conversation with each other.

That is why I said it is important to start a fresh page when you deal with different people; the date is really important because when it comes to diagnosis and other health professionals, sometimes having a date helps us in terms of prognosis, it helps us in terms of giving us a timeline in terms of pathology and that is really important when it comes to providing care because we need to have a full picture. This notebook is important as well  because it also helps you to have a conversation with your loved ones when you are not able to. Keep this notebook safe, make sure that someone who is helping with your care has access to this notebook. This has to go into your bag whenever you are accessing health services. If someone has to phone the ambulance, this notebook goes with them into the ambulance with you because this is almost like your bodies way of communicating with other people if and when you are not able to.

This blog is conversational, where Prof Elena Moore, Lindeka Mrengqwa and Lulamile Mabe explore experiences of seniority, research and older persons care in a peri-urban informal settlement in South Africa.

About the researchers:

My name is Lindeka Mrengqwa, a 30 year old mother of one beautiful, smart young lady, born of a strong black woman who always emphasized the importance of education. I did my undergraduate and honours studies at the University of the Western Cape, where I fell in love with the world of research. I majored in social science , psychology and linguistics. My research interests focused on infertility, specifically amongst young married women. I have always been interested in studying underprivileged groups in society, which is the reason behind my interest in older persons.

My name is Lulamile Mabe, born and raised in rural areas in the Eastern Cape. I came to Cape town to further my studies. I did electrical engineering, during the year I realized it wasn’t something I wanted to for the rest of my life. The following year I enrolled in university of the Western Cape in Social Sciences, majoring with psychology and women and gender studies, that’s where my curiosity about research began. I always enjoy interacting with people especially the older persons. I joined SIFAR in 2018, as research assistant where my love working with older persons has grown even bigger.

Can you tell me a bit about your experience of working with older persons? 

Lulamile: I’ve been working with older persons since 2018, there is nothing much different from what we are doing in this programme. What an older person needs…they need to be seen, to be understood and you want to be respectful…so that’s where you have to start. An older person might feel like the outsider. Older persons are excluded from the community, as soon as they see us (the young generation) they start like feeling like, what do we ‘Want from them?’ ‘What are you here for?’ Older persons don’t normally get visits from young people, they are the excluded generation.

Working in this programme was a continuation of what we know to expect, we want to build trust so we can be a part of their life, not going there and getting information and going away. Sometimes the elderly start to close up, they don’t want to open up because of their experiences of what happened to them, or maybe they don’t trust us, the younger generation.

Most of the time an older person will ask ‘What do you want to do with this information? Why are you here? What change is it going to bring?’, we have to explain the research and that things don’t just change overnight, we have to do the research first, find out the things that are needed in the community. maybe we have to change policies. So that is my experience in this programme mostly with older persons.

 Lindeka: I’ve been working with older persons for several years. My experience with working with older persons…I don’t know how to really vocalise it in a way that will give justice to it. Older persons are always so friendly, really, it’s always so pleasant to speak to older persons and they always want to share, but I find that it’s different speaking to elder women as opposed to elder men. The way I approach elder women is different from the way that I approach elder men, maybe it’s because of that awareness that men grew up in a different era. It is the patriarchal system where, as a young female, I know how, or the expectations of how I should approach elderly men, as the person who is the head of the house and other cultural concepts, and I know how to approach elder women.

 

What does seniority mean to you?

Lindeka: It is a tough question. For me, when I see an older person, I see a wealth of knowledge. I see someone whose been through phases of life that I’m still at, and I admire them in the sense that they’ve survived, regardless of what they’ve, their challenges or decisions they’ve made  -they survived. The fact is that they were once 30, and they survived and they’re now 75 years old. They have survived raising kids, they have survived, you know, so I admire them for the fact that they have successfully made it through and survived stages in life that I’m still navigating.

Elena: And can people have seniority, where it is not about age, it’s about position or status either in the community, or in an organisation?

Lindeka: I’m not sure…I’m not sure if I think the two link together. The more you live and go through experiences, the more knowledge you gather. I’m not sure if I can say at my age, I have seniority… Unless I have seniority over people that are younger than me. I think there is  something special that comes with age, that comes with growing older and seeing different eras.

The people we speak with are people who survived apartheid and they will tell you that we came to Cape Town before it was even legal for black people to move to Cape Town, but they made ways through, and we have worked in different markets. Elders worked in an era where it was illegal to employ a black person, and we (South Africa) transitioned (into Democracy) and there was freedom that black people could work anywhere that they wanted to work. So, yes, I think there’s something special that comes with age and being able to transition through different phases of life and different political eras.

Lulamile: Being an elder simply means that you have to be put first in everything that you do. As an older person you have to be placed high in everything that you do, we have to respect you, we have to give you the right of way whatever like if we are in the shops, home affairs and everywhere we go. We always have to respect the elderly, that’s what seniority means to me.

 

How have your thoughts on seniority shifted or being shaped by this work?

Lindeka: I think it has. It’s dawned upon me that the older persons that we’ve worked with have been parents since the time that they had their kids, and they are still parents to great great grandchildren. They’re still parenting until their last moments on earth. You know you; I have this perception that you parent your own kids, they move out, they have their families and they parent then you just play the role of a part time grandparent. I’ve seen that in this township older people are still parenting because sometimes parents are not available.  Older persons are playing the role of a parent, not of a grandparent, not of a great grandparent but they’re still parenting.

Lulamile: …it is very sad because from what I have seen, majority of older persons feel neglected, they don’t just feel like from the community but even by their biological children. It is heart-breaking going in a household and it is an older person, he is there alone, there is no one in the house and they can’t walk. I see especially in Khayelitsha older persons are not visible in Khayelitsha. They are invisible, even in their own homes from people in the household and it is much worse outside. It is very painful.

We are supposed to give back to our elders, they raised us. I find that the only time we care about older persons is when they have something, like social grants. Seeing an older person alone, they are helpless when there is no child around, I have encountered that many times. Older persons will tell us “I don’t know why I am still alive I feel like God can take me now., its time. I have raised them (their children) but it’s so difficult for them to take care of me now”

I’ve questioned that a lot because I couldn’t understand what will make you neglect your grandmother or your family, so I have to question  to try understand. Unfortunately, in many families grandmothers are still there and their daughters or son pass away they are left with their children now. I think there is a gap between the younger generation and our elders, and we are not aware about what care means.

I feel like we don’t understand what care means. In most cases when we are talking about care we think about material things like ‘what can you do for me’, ‘if you cannot do anything for me I don’t consider that as a care.  I think it is that gap, in what is considered as care and that’s why I try to understand it differently. There is a gap of not understanding how and what care is,  care is not only material things and finances.

 

Can you talk about the gendered and generational experiences with working with older persons?

Lindeka: When you approach elderly men, it is about respect and showing them respect, because you are taught that you should give elderly people a certain amount of respect, and that respect shows in the way that you speak to older persons, the way that you carry yourself around elders, in the way that you frame your questions. You must address elder men as “Tata”, “Okay, tata, how is…”, when you enter into the house for example, its “Molweni tata, njani” (Hello, how are you) and you must have that “tata”, you know because its isiXhosa and you can’t just say “hello, how are you”.

The way that elderly women relate to me as opposed to elderly men is also different, because men will take a more guiding role, while elderly women take more of like a friendly, peer, sisterhood role, even though I might be younger than them but because we are both women, we will speak in a way that elder women know I can relate to what they are talking about. Elderly women will be more flexible. So, it’s a bit different. We have also learnt to ask people’s clan names for example, you introduce yourself, ‘This is where I am from, this is my clan name’, our elders relate so much to that and start telling you about their clan names and they’ll start saying relations that, “oh I know someone who’s the same clan name as you, and we used to live together there, there and there”, so it’s those cultural things that sometimes come up and matter.

So I might frame a question differently depending on who I am speaking to. I find that there are gendered roles in a household, when asking the older men about things they will say ‘no I wake up and then my wife makes the breakfast’, and you realise that in this household the roles are very gendered. You start framing the questions differently as, “What do you do in the house?”, “What do you help with around the house?”, but I try to make sure that I’m still asking the same question, that the purpose of the question is still the same.

Its also like a cultural thing, as a men you are supposed to hold a certain kind of dignity, especially when you’re an older man. An older man comes with a lot of respect in our culture, so the older you are, the more respect you have. So, you carry yourself in a different way. Sometimes I feel like older men try their best to make sure that they give us ‘what we are looking for’. Older men make sure that they share their experiences because they want the purpose of the visit to be fulfilled like, to feel like they’ve given us ‘what we came for’.

It is more or less the with elder women, the minute you ask the first question, it’s a conversation. Elder women usually tell us about not being able to get an education as a woman, and the way education was not valued at that time. It was more farming and livestock, uhm, so it’s yes, it’s different.

When you come across older persons that have been through a lot and still going through a lot its, its heart-breaking. Older people will tell us that, “you know I’m suffering for a long time”, you know, “I came to Cape Town and suffered but in a different way but I’m still suffering now”, so you know its heart-breaking to see those type of stories. Life hasn’t really gotten better for some older persons, they are still in a township with a high crime rate, there’s drugs everywhere, and you have this RDP house which you got for free and you are thankful for that because there was no way you could have afford it, uhm, but the environment, you are still there as an older person, it still doesn’t do any good for your mental health or physical health or any kind of positivity that comes out of it. So, I guess its bittersweet, I mean you look at the positives and then you look at the negatives that are all around.

Lulamile: With the men I have interviewed in this programme, there was an understanding between them that many of them are not working, they are old  and they need to be taken care of.. There are a lot of complaints in the house, for example, ‘sometimes I want to leave her alone but I will come to my senses…this is my parent I can’t leave them alone’. Many caregivers feel like that, for the sake of peace it happens in houses. Sometimes the housework has to be divided between the caregiver who is the grandson and he has to go and cook at the back (of the property) separate from the care receiver. We need to understand that older persons become more difficult with age, so I think it is a gap in understanding care.

 

This blog is a conversational piece which speaks to The Family Careigiving Programme’s Research Study in South Africa  and released in November 2023. 

My name is Janet Ananias, and I am the Country Lead of the Namibian research team for the Family Caregiving of Older Persons in Southern Africa programme. In case you don’t know, Namibia, covers 824 116 km²  and is about twice the size of Germany and about 70% of the size of South Africa. Despite the size of the country there are just over 2.5 million people in the country making it one of lowest population densities in the world. In practical terms this means you have to travel vast distances often in very warm and arid lands before you reach a town. Moreover, there are 11 different ethnic groups and about 13 different languages. Whilst English is the official language in Namibia, only a small percentage speak it as a home language. The most common language spoken is Oshiwambo and the most widely understood language is Afrikaans. Given this rich diversity and geographical landscape, I hope to highlight some of the key issues we encountered in the establishment of our project in the Namibian context.

One of the most crucial considerations I had to consider is what kind of research team do we need to be able to undertake this work. I thought it important to have some interdisciplinary expertise from social work, sociology and psychology. Given the sensitivity required while working in family settings and with older persons, I also wanted to work with colleagues who have some experience in working with older persons. As we consider the ways in which the population is ageing, I also wanted to support some younger, emerging scholars who can continue to lead this work over the coming decades. A further essential requirement to consider with regards to the composition of the research team was the researchers’ ability to be able to communicate in a particular local Namibian language.

Planning a research study in a country rich in cultural and geographical uniqueness necessitates careful consideration. As much as one is curious to gain an understanding of family caregiving in all settings and contexts, one must, unfortunately, make certain decisions when considering the resources available. Namibia’s harsh climatic conditions and paucity of water as a resource in most parts of the country is leading to natural disasters such as droughts, with older people being among the most vulnerable. The most significant feature of the selection is the participants’ regional representation. With the Khomas region having Namibia’s capital city and a more diverse representation of ethnic groups, it is a logical choice to include the Khomas region among the three regions to be studied. It is also vital to consider allocating a reasonable number of participants to the area of the country with the biggest concentration of elderly people.  The Oshana region, located about 600 kilometers north of Namibia, is amongst the four regions with the highest concentration of older persons in Namibia and is included in the study. But the socio- economic circumstances of older persons is an essential factor influencing the quality of family care provided to older persons. This prompted us to select the Kavango East region, approximately 700 kilometers north-east of Windhoek, an area that is one of the poorest in the country, in order to gain a better understanding of family caregiving despite extreme socio-economic hardships.

Care practices and the everyday lives of older people differ radically across space. The majority of older people in Namibia live in rural areas. As a result, only two urban sites in the Khomas region, namely Khomasdal and Samora Machel constituency, were selected. Baumgartsbrunn, a piece of land which was owned by a commercial farmer, but became a settlement farm in the Khomas region, Epya-Eshona village in the Oshana region, and Muroro village in the Kavango East region were chosen as rural locations for the study.

A crucial feature related to working with communities and to gain cooperation from communities in Namibia is the support from the Governor and Councilors as political office bearers. These leaders are public figures and trusted members of their communities and important stakeholders for working with and understanding different community settings. Family caregiving of older persons takes place in the privacy of the homes of participants, and thus is not easily accessible. Hence, it is not only the meetings with political leaders but also meeting traditional authorities that are crucial for understanding the ways in which communities are structured and governed.  In the three regions where the study is undertaken, we have engaged in meetings with the traditional authorities in each of the regions. Recalling our recent meeting with the members of a traditional authority from the Khomas region, I was struck by the insight of one of the members of the traditional authority into the rights of older people.  The conversation on older persons from the perspective of different stakeholders is an important way of gaining insight into the different narratives and discourses on care for older persons.

This blog is in conversation with our Research Study, released in October 2023 and written by Janet Ananias 

My name is Charis Sass and I am a research assistant for the Family Caregiving of Older Persons in Southern Africa programme. Conducting interviews in a space in which there is an older person who is receiving care is tricky and there are many situations in which you, as the researcher, can feel as though you need to adjust and provide care to the ‘vulnerable’ participant, the person who is in pain.  But how do I think about that? How am I understanding this need to ‘care for’ the participant?  In considering this, I have taken the time to reflect on how I think about vulnerability and transitions and this blog shares some of this thinking process.

Entering into a home where there is an older person receiving care was quite challenging not only because I am a stranger, but because a lot of the times the older persons receiving care was in pain. In those instances, being the interviewer it can be challenging speaking to the older person in pain, you find yourself asking “is it okay for me to be here?”.  If you decide to continue with the interview you then ask the next question “how do I care for my participant during this process?” I spoke to a participant who was experiencing severe pain throughout the interview and I had told her we can do it another time or come back, but she insisted I stay. I decided to go ahead and throughout that process I could physically see, with my eyes how she was moving around unable to at times complete an answer, due to being in pain.

In reflecting on some of these experiences, I considered how I thought about vulnerability. I was seeing their physical and individual needs first and not seeing their sense of personhood and individuality. It was particularly important for one woman, who talked to me and shared her life experiences, whilst I worried about whether she could manage the steps and was okay. I began to see that I was also drawing assumptions, judgements and framing my thinking about what I saw, not what I was hearing. In thinking about how I managed the environment in which someone is experiencing pain reveals I considered how I might have made the pain worse by not listening and hearing them, but by thinking I needed to comfort or assist the older person.

This does not just apply to physical pain but psychological pain as well. For example I was speaking with someone who has just had a stroke, and was experiencing changes in their everyday. They were now unable to go to the bathroom unassisted or dress themselves amongst other things. Changes in their physical capabilities was  something that they grapple with in their daily lives and I felt as though asking them about it ran the risk of putting them in emotional distress. This process of extracting this data from them made me feel at times as if I was scraping and touching on psychological wounds that they experience. Also, understanding that for some participants not being able to do things for themselves made them feel helpless and hopeless and vulnerable and knowing that as you speak to them you are not sure how to at times remedy this feeling that they have.

But why was I focussing on the physical? I was seeing certain manifestations of vulnerability in particular ways which overshadowed other vulnerabilities that exist. I began to understand that I was ‘othering’ persons who were physically frail, whilst trying to be compassionate about their pain. I was wanting to ‘care for them’ and in the process I realised I myself was adopting a protective approach.  In thinking through this, I began to consider the local, structural and historical factors that made them ‘vulnerable’ rather than seeing them as ‘vulnerable.’ In the example I described above, the male participant was having a long-standing dispute with a private pension company that was not releasing the funds he had saved up, this caused him great tension, this made him ‘vulnerable’.

For some participants who bring up the topic of death I was not prepared in how to deal with it. My thoughts went to their vulnerability and desperation.  There have been multiple participants who have told me that they are “ready to die” or “wanting to die”. What do you say in response to that? How do we as researchers  respond to these statements in a way that will aid them in this process? But why did I think I had to support them in ways that were different to what they were saying? Whilst I am still trying to work on how I make sense of this, I understand that there are different dimensions to this and different ways of looking at death. For many of the participants who say this, they feel as though they have lived their life and are ready to pass, whereas for others the emphasis is on ending the suffering they and their loved ones are going through at this stage in their life.

Whilst I still grapple with these issues, I engage in questions about whether my feelings and observations in the field and thinking of older persons as ‘vulnerable’ undermines other ways of hearing and seeing and understanding their experience. I did wonder that if I saw the same person with more support, in more comfort, through either material resources, medical devices or practical support, would I consider them vulnerable? It led me to think about what was creating or underlying the context of vulnerability rather than seeing the person as vulnerable.

This blog is in conversation with our Research Study, released in August 2023 and written by Charis Sass 

My name is Nonzuzo Mbokazi I am a senior researcher on the Family Caregiving of Older Person in South Africa programme. A part of my responsibilities is sampling participants for the research study. One of the research study sites is KwaZulu-Natal, Nkanyezi. Nkanyezi is a rural settlement under the traditional leadership of Chief Ngwenya.

What has made me familiar with Nkanyezi is that my father was raised here. I frequently visited my paternal grandmother in this area throughout my life until her passing away in 2011. Nkanyezi can be considered a disadvantaged rural settlement; and provides us with a rural understanding of caregiving experiences of family caregiving of older persons. The site is predominantly IsiZulu speaking. I met with multiple members of 15 households. Care givers and care receivers were interviewed. In many households this involved two or more caregivers.

Due to Nkanyezi being ancestral land to my paternal family, and my paternal relatives having lived in the area for over 3 generations, some of the research participants recognised my surname and subsequently had some knowledge about family members and relatives who had grown up in the area. However, they did not know me at all. A social worker Sinawe Mthiyane who lives in the area and works in the rural settlement was able to share a list of six households with me. She had their permission to share their contact details with me. I then had to call the households to arrange a meeting date with them, on that date go to the households to introduce myself and the programme.

Nkanyezi as a rural settlement, is centred by traditionalism. Thus, there were certain protocols I had to observe, for instance, when you speak to a peer, they expect you to take them as a sister or brother. When you speak to someone by age who is a mother, father, grandmother, or grandfather, that is how you relate and engage with them; doing this shows an understanding of the setting and most importantly, respect.

What was stark for me in conducting this fieldwork is that caregiving for older persons not only affects the life of the care receiver, but it also affects the care giver and family. It affects relationships, as well as the overall functioning of the family. The care giving demands are strenuous, physically, mentally, emotionally, and financially. This piece will try to map out what contributes to these strains.

Water and Poor Roads – Impact on care receivers

Caring for older persons, requires water. A basic condition for care but something that is not guaranteed in all settings. It took 27 years for Nkanyezi rural settlement to have access to running water, even then, it is a very small pocket of people of the 155.68 km² area have access to running water. The project has been put on hold since March 2023. This is a very long time as local councillors had said the water instalment would resume in April; but the wait for running water in a large part of the community continues since 1994.  All the 15 households in this research did not have access to running water. The households relied on water delivered by a water truck, which delivers water in the area every Thursday (a collaborative effort of the Chief of Nkanyezi, and the Local Municipality). There are water points throughout the rural settlement, people use wheelbarrows to take buckets and other water containers to collect water from the water truck. There are some instances where the truck does not come, and people will have to rely on rainwater or collect water from a river nearby. The water in this river is unclean and used by cattle, so it cannot be used for consumption.

For older persons who need more water due to frequent linen and clothing change, this is often a challenge, and they must ask neighbours if they run out of water. In the Mhlangu household who participated in this research study, the care receiver was 90 years old, she was no longer able to use the toilet herself and often had accidents and this was a challenge. The caregiver Thoko explained that she would collect more water containers to accommodate for this (25 litres x4), and the usual number of containers they used to take is 25 litres (x8). This meant that Thoko had more containers to move to and back from the water point. She had added to this work by 4 containers. A total of 6 trips using a wheelbarrow. Luckily, there is no strict water allocation for households at least not yet.

Poor road infrastructure has been a challenge in Nkanyezi, 29 years after democracy, it is still something that local government has not been able to attend to. As a result, when people are sick and call the ambulance, there are certain areas the ambulance will not drive to due to not wanting to have a breakdown. Consequently, the care receiver in the Mntimande household, had to be wheel barrowed by her daughter, her caregiver, Zanele, to the stop of the ambulance when she was struggling with her health or if she needed to get to a hired car to access the clinic or hospital. The Mntimande house is at the bottom of a valley and is very rocky, and an ambulance had once broken down going to collect her.

As someone who had the opportunity to see this road and walk to the Mntimande home; I can say that the road is in bad condition and is not car friendly. I can only imagine the difficulty Zanele must face, wheel barrowing her mother up a hill to get to the ambulance.

Distance to the health facility

The clinic is quite far (approx. 20km) which means caregivers and older persons need to take a taxi to get there (costing R20) or hire a vehicle (at R100 round trip). For patients who need to get to the clinic in Sundumbili township, they must budget R20 from the rural area to the township, when they get to the taxi rank at the township, they need to take a taxi to the clinic which is R15. This is a R35 cost. If older persons need to be accompanied by a caregiver, it will be R70, the cost for two people.  These amounts may seem reasonable but for a low-income family, this is financially stretching as this money could be added towards food. Throughout the 15 households the cost of transport came up as a real challenge.

Scarcity of Medical Supplies

Medical supplies were reported as a challenge. In the Mhlangu household, if adult incontinence products for the 90-year-old care receiver ran out, sometimes the Community Health Worker (CHW) would not have them and must wait to collect the supply from Department of Health. This waiting could be up to 6 weeks.  This would mean the Mhlangu household incurring an out-of-pocket expense of borrowing money from a neighbour. The care receiver from the Mhlangu household Gcina passed away; I had the opportunity to touch base with her care giver Thoko a week afterwards and she shared that as stressed and anxious as she was towards the end of her mother’s life; she has a sense of relief that her mother is no longer suffering and having to cope with not having the quality of care she required especially incontinence products which can maintain her dignity. The CHW Nonhle was also interviewed, and she shared that she was aware that sometimes she cannot respond to needs of households as efficiently as she would like to, but this is because she also needs to correspond with the Department of Health; this is a stumbling block because the department is often overloaded with requests. The CHW also expressed that she was overwhelmed as the only CHW serving the entire Nkanyezi area, approximately 32,322 number of persons, serving not only older persons but also people living with HIV, TB, and Non-Communicable Diseases (NCDs).

My experience

Conducting this research in Nkanyezi has been a very emotional one, learning about the struggles of care receivers and care givers and the minimal resources which they must manage and cope with paints the grim picture that household’s live with and live by. Kusinda kwehlela, it is a heavy burden that these households need to carry to provide care for the older persons in their families to live a life with dignity while struggling with water scarcity, poor road infrastructure and the cost of accessing health facilities. I realised that access to basic infrastructure such as running water, roads and reliable health services is only the start of building a better care infrastructure. The absence of such infrastructure is experienced daily by care receivers and care givers.

NOTE: Certain information in this blog has been changed to protect the identity of those who have agreed to participate in The Family Caregiving of Older Persons in Southern Africa research study. 

This blog is in conversation with our Research Study, released in August 2023 and written by Dr. Nonzuzo Mbokazi 

 

How do you manage in-depth qualitative data across 25 researchers, sixteen research sites and four different countries in Southern Africa? When issues of data confidentiality, anonymity and security are coupled with everyday realities of access to mobile data, internet connections and unstable electricity supply? How do you ensure accessible, effective, and reliable methods of data management? That was the task we were given at the beginning of the year as we prepared for the research study, which is part of the family caregiving programme, a programme that is dedicated to understanding family care of older persons in Southern Africa.

The study explores caregivers and care receivers experiences of family care of older persons in South Africa, Botswana, Namibia and Malawi. Key to a project of this size and scope is research data management, which is happening in vastly different geographical locations, in different languages, and with different researchers who all have different research experiences. Keeping consistency across the research sites whilst allowing for local and contextual specificities was what guided us through this process.

Our data officer, Zeenat Samodien, briefly describes our data management practices in this blog, specifically highlighting the data collection process and the path it follows from the participant to the data officer. The diagram below illustrates several of the key steps involved in our daily data management which will be outlined in this blog.

 

As summarised in our Fieldwork Training Pack, our data collection methods are multiple and include a short assessment on activities of daily living, individual in-depth qualitative interviews, a family map (akin to a genogram), and a household budget. The researchers are working with 80 households in each country over two points in time. This means we are gathering a mix of images, text, and short survey responses from 1280 participants across four different countries and multiple research sites within each country. Have a look at our Fieldwork Training Pack to learn more about our data collection tools and the Interview Protocol.

So how does it work?

 

Collecting data:

Our data is collected by our researchers when visiting a household. Our researchers collect data via a mobile device that is dedicated to fieldwork. To ensure good practice, all researchers have the same device provided by the programme, and all devices are preloaded with the required tools to conduct fieldwork and are pre-loaded with mobile data. To simplify the process and avoid being in the field with multiple electronic devices, the mobile device has an audio recorder to record all interviews. The device has a camera which is used to capture images of the hardcopy consent forms, household monthly budgets and family maps. The required tools are easily accessed on the home screen of the mobile devices as shown below.

 

 

 

 

 

 

 

 

 

 

 

 

Uploading Data:

Once the data is collected the researchers then share all the data that they have collected with the data officer using the same device used to capture the data. The researcher uploads the audio recording of the interview, along with images of the consent form, family map and household budget via online forms, shown in the image below.

The forms used to upload the data contain a few questions aimed at summarising key information about the household visited. This allows us to keep track of the sample and prevents us from over-sampling specific households, something that is difficult to control when interviews are happening simultaneously across different sites within different countries. Once shared in the above way, the uploaded forms and their attachments are accessed by the data officer.

Data Review:

The data officer by accessing the cloud space reviews the data collected during the interviews. Thanks to the accessible format of the audio and images, no additional conversion is necessary, meaning she can provide instant feedback. Upon receiving the files, the data officer records the participant pseudonym along with metadata, such as when the interview took place, where it took place and who the interviewer was.

The data officer, upon initial review, will flag any issues regarding the quality of the data, such as blurry images or incomplete data, directly with the researcher to ensure appropriate action is taken in a timely manner. At this stage, she reviews the attachments to ensure that the correct files were uploaded. It is imperative to ensure that the files received are indeed the files belonging to the intended participant before saving the files to the relevant folders. This stage of data management helps avoid any potential errors, inaccuracies or other issues that could arise at a later stage. This review stage is essential for data quality and requires diligence and meticulous detail to ensure that data is reliable.

Storing Data:

Once confident that the correct files have been received and have undergone the necessary quality checks, the data officer then organizes the files according to country, site, household, and household member, following a naming convention for storing data files. This is a step that is crucial when working with large amounts of data. Following a standardized naming convention that is consistent across the team is important as it ensures that the data files are well organised which allows for easy retrieval when needed.

Reporting on the Sample:

Once the data has been safely stored, she then shares feedback on the participant sample and the data received thus far. The feedback is shared during weekly team meetings and serves to provide an overview of the households visited, where they are located and who the caregivers and care receivers are. This further prevents oversampling from occurring as the researchers, even though dedicated to certain sites, are provided with an overview of all participants in the programme and are therefore able to make decisions in the field on which households to include. This sample overview is made available on our website under the South African Country Profile, where weekly sample updates are shared, allowing you to keep up with our research as we progress!

Why is data management crucial for any research programme?

Following a data management plan, such as the one shared above ensures that the data collected is effectively managed, stored and preserved. This was especially important given the nature of The Family Caregiving of Older Persons in Southern Africa Research Programme. We were tasked with managing large data sets comprising of in-depth qualitative data across four different countries in Southern Africa.  By prioritising issues of data confidentiality, anonymity, and security in a context whereby we take seriously the everyday realities of varied access to mobile data and internet connections as well as unstable electricity – we carved out our own unique data management plan which allows us to ensure accessible, effective, and reliable methods of data management. Research data management is therefore integral to any research project and is embedded within the research protocol as well as the daily realities of the context in which research is being conducted.  This is a step that should not be overlooked when conducting research on any scale and has the potential to bring intriguing insights into the nature of your research programme as a whole!

This blog is in conversation with our Fieldwork Training Pack and written by Zeenat Samodien, the Family Caregiving Programme’s data officer. 

 

 

In the Southern African region, there is a strong practice of family-based care for older people. While it can be very fulfilling work, providing care to older people who have significant care needs is expensive, time-consuming, and difficult. Few people can afford to pay for external support, services and equipment needed to provide care at home. However, there are not adequate policies, structures, or funding and coordination mechanisms in place to support long-term care in the region.

While South Africa has a more developed long-term care system than some other countries in the region, the government has progressively defunded residential care in favour of community-based models (which is a preferable), but has not substituted this with programmes or funding to support community and home-based care. In other countries in the region there are very few to zero long-term care structures or funding in place. Given high rates of poverty and unemployment, this leaves family caregivers (most of whom are women) with significant challenges in providing care with very little support, resources, or opportunities for respite. This negatively affects the wellbeing of both older people and care providers.

Despite the challenges that families face in providing care, there is very little public awareness or pressure put on government by civil society to better support care provision and the needs of older people and caregivers. We urgently need to consider the impact that population ageing in Southern Africa will have, not only on older people and their families, but on health, care, and economic systems. While there of course other pressing social development and health issues in the region, the UN Decade for Healthy Ageing (2021-2030) calls on societies to put in place systems and structures to ensure that older people can live healthy, independent lives and to support care for older people in families, communities, and societies more broadly.

The programme on Family Caregiving of Older Persons in Southern Africa aims to create awareness and demand for action around the significant gaps that exist in support for family care in the region by amplifying the voices of older persons and caregivers. Our mission is to create and hold a space at local, national and regional level to enable such conversations to happen and for locally based, contextually relevant solutions to emerge. By bringing together scholars, policymakers, government officials and non-governmental organisations, we aim to broaden our understanding of family caregiving, an understanding that includes different perspectives and knowledge producers.

As part of our programming, we will host and facilitate community fora, webinars, meetings, a range of public lectures and capacity-building workshops. We are also partnering with a range of stakeholders in our programme sites in South Africa, Malawi, Botswana, and Namibia to co-author policy and advocacy briefs, policy and legislative texts and articles that can inform policy and programming and, hopefully, increase funding to this under-resourced area.

If you are interested in partnering with the programme or sharing the information about the need to think about family care, please do be in touch with us.

This blog is in conversation with our Public Engagement Approach, released in March 2023 and written by Dr Gabrielle Kelly.

This is not a straightforward question with an easier answer. If we first start with the word caregiving, what do we mean by it? There is the word caregiver, a term used for anyone providing care. There is the term care worker, a person providing care in a paid role. In everyday language a carer can be considered both a person providing care to a family member (a person with whom they may have an affeictive relationships with such as a friend or neighbour) but it can also mean a person who is getting paid for caring. We distinguish between the two when we say ‘a paid care worker, working in the family home setting.’ In this way we are thinking about who is doing the care work and whether it is renumerated. The distinction between unpaid and paid carework is emphasised, but less attention is paid to how and when we use these terms and when these terms connect. When we speak about the care work we do in looking after an older family member, do we refer to it as care or work? How do unpaid family carers sustain a livelihood and how is their work valued? If a caregiver is a family member and their position is paid, do we then refer to our cousin in the house as a ‘paid care worker, working in the family home’. Moreover the paid care worker, who is a family member, might get paid, either in cash or kind, or they might not get paid, does that change what term we use and how we think about family care?

We connect this to what activities are considered family care, i.e. what is included in family caregiving tasks and what is excluded? Is it the practical task of caring for an older person or is it caring about them and paying for transport to go to hospital for a check up? Everyday we make moral judgements about family caregivers who provide “good care” and those that neglect their older parents. But do we consider the conditions that shape peoples’ choices and ability to engage in family care?  A family member might recognise a care need, but they may be unable to practically carry out care for a range of reasons such as employment, distance, personal or health reasons etc. If they organise care, and pay someone to care for an older person, are their actions and intentions considered carework, and family carework? What are the boundaries of this? In a family setting, there is often one person paying for care whilst another person is managing and undertaking practical care work.  What does that tell us about hierarchies, relationships and relationalities in family care and between different forms of care?

We might then wonder what motivates people to engage in family caregiving. One person might undertake this specific care work as a way of reciprocating an act of caring that they received when they were younger. For example, some people look after a grandmother as the grandmother looked after them when they were small. They might also be undertaking care work, for the grandmother, as a way of supporting their own mother, as the mother might have asked them to step in for her as she feels that the duty to care rests with her but she is employed and needs help from them. Therefore other family members step in and undertake family care work, because they are supporting the broader needs of the family and household. They might do it as there is simply no other choice. There is no other forms of support and they cannot afford to pay for care.  Understanding the Who does what for Whom within family care and why they do it is critical to this programme but we are intersted in understanding it as a part of a wider individual, familial and societal history. So it needs to be understood within a wider context of kin relationships, relationalities in specific political-economic moments in time. This is how we are understanding family caregiving in this programme.

Family caregiving is not only to be understood as what happens in families alone. Family caregiving, has been privatised for far too long. Family caregiving is political. It has been used to create hierarchies and difference between and within families both in the past and in the present. On the one hand it is celebrated as a form of Ubuntu, a practice defining and displaying how we see each other as humans. On the other hand, family caregiving has been used to avoid taking responsibilities for care and addressing the gendered, racialised and classed consequences of the colonial and postcolonial context in which it occurs.  If we want to understand family caregiving, we need to listen to the experiences and meanings it has for individuals, families and communities.

This blog is summary of some of the key concepts of our Research Protocol, released in February 2023 and written by A/Prof Elena Moore.