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Table 2 Summary of main themes and quotes from study participants

From: Stakeholder perspectives and requirements to guide the development of digital technology for palliative cancer services: a multi-country, cross-sectional, qualitative study in Nigeria, Uganda and Zimbabwe

Theme Description Quote
1 Acceptability of digital technology All stakeholder participants were excited about using digital technology to contact palliative care services. Quote 1: “It will be very good, it makes the work easier and faster so whenever there is a problem, I just call or text someone, then the person replies to me than me coming down to the hospital before I need to see the doctor, before our appointment date if there is any problem I will just call the palliative health care service, is there any drug it is very very good, it will actually reduce the stress” (caregiver: Nigeria).
Quote 2: “We don’t have enough healthcare providers across the country and it’s difficult to get people to go to some of these areas that are a bit far and hard to reach. So mobile technology, it’s where the world is going, we can’t avoid it, I think we should have to adapt it, adapt it to suit the services we can provide” (health professional: Nigeria).
Some participants had concerns using technology to contact palliative care services. They were concerned about breach of privacy and confidentiality
and that there may be loss of data during transmission. These concerns were mainly raised by caregivers, health professionals and policy makers.
Quote 3: “...but there must be that privacy; you don’t just share out someone’s information, there should be some control. I expect the health professionals to kept confidentiality” (caregiver: Uganda).
Quote 4: “… it may interfere with the confidentiality of the health personnel or some kind of data linkages, for example if I text you I am not so sure who will read the message. There some patients who give their phone to other people” (health care professional: Uganda)
Quote 5: “...There are hackers out there, they access that information, and do we have a way of making sure we also don’t lose that data, the computers or the-even the tablet crashes” (Policy maker 02–045, Zimbabwe).
Patients participants were hesitant to use technology for fear of disturbing health professionals, while health professionals were concerned that some patients will call during awkward hours. Quote 6: “… though sometimes I want to call but, err, I just feel maybe because it is only one doctor’s number I have so most times when I want to call him I feel maybe I am disturbing him because he is the only one I am calling and sometimes I call him, he doesn’t pick and I just feel maybe I am disturbing him (Breast cancer patient: Nigeria).
Quote 7: “… some, they will call you at 3:00 am ha, because I have had an experience when I was still on the ward a patient called I said ha this is not this is an odd time” (health care professional: Zimbabwe).
All stakeholders stated that most health facilities do not open over the weekend or do not have a call centre at night time. Quote 8: “...hospice does not have a 24-h help line service to help people like us, that somebody we call and will pick the phone at all time, may be a receptionist, something like that, they don’t have it... so, when you get an attack at night or after 5 or 6 pm and over the weekend, and over the public holidays” (caregiver: Uganda).
Quote 9: “… like a call centre that is set up. Those guys are trained in palliative care, they can actually try and triage the patient over the phone, I think it’s better for you to go to a 24-h because you are not, definitely not going to be managing the patient over the phone” (health care professional: Zimbabwe).
2. Current context of technology use Caregiver and patient participants reported that they use technologies to search for information on the internet about their cancer. Quote 10: “...like all my results, all the test I did nobody explained anything to me, I had to try and know what it is using my phone, so I had to google what is the name of this test, it will tell me. So, I know the kind of cancer I am dealing with I know the kind of treatment that is best for me even without my doctor talking to me I already know what am supposed to do, and things am not supposed do” (breast cancer patient: Nigeria).
Caregiver participants reported sharing recorded videos with colleagues in a similar situation. Quote 11: “… I belong to one group of caregivers and sometimes they upload some videos, share some exercises that are good for especially for people with the lymphedema, so I watch those videos and encourage my patient to do” (caregiver: Nigeria).
Quote 12: “I used technology, WhatsApp call to communicate with the health professionals and were able to see the patient and also sent videos and photos of the patient sores” (caregiver of a Kaposi Sarcoma patient: Zimbabwe).
Caregivers and patient participants contacted palliative care to ask about availability of services, or medication or booking appointment. Quote 13: “I think it is useful in any, every kind of situation, when you are just looking for information about your illness, you need an immediate answer from a doctor, whether you need to know the availability of your medication, like thoroughly or even when you need to book an appointment with your doctor. It’s very useful in every kind of situation” (caregiver: Zimbabwe).
Caregivers reported using technology in critical situations.
Health professionals used technology to make follow-ups about the patient.
Participants reported benefits of using technology.
Quote 14: “More especially if the patient is really very sick, you feel like when you just send text message you feel may be that person has not received the information or she has not known the gravity of the sickness so you personally need to go to the hospital” (caregiver: Uganda).
Quote 15: “Of course, finding out how is the patient is doing, sometimes if the patient was very sick, may be the patient passed on, so that information is very important, for me to follow up and find out how the patient is doing” (health professional: Uganda).
Quote 16: “… we also call to confirm if the patient will be at home when we are planning to come for our home visit” (health professional: Uganda).
Quote 17: “… you find a traffic jam using technology will save time and also at the same time it will save the patient from her pain … you can communicate directly and get answers directly, instead of going to hospice” (caregiver: Uganda).
Quote 18: “Stress on the main road, like my condition now if you enter any gallop it affects me, I was rolled from this err bumpy road to this place, my pain increased, if it is something that I should be at home and call I don’t think all these pains will increase at least I will be a little bit reserved, than to add to the problem I am having” (breast cancer patient: Zimbabwe).
Quote 19: “The advantage is that you have all this information in one place and you’re able to refer back to it and you’re able to analyse per period... you can do so many things with that data” (policy maker: Uganda).
Quote 20: “… it shortens the distance that you have to go to provide services and makes it faster, makes it easier, makes it direct, definitely … it’s possible that there might be a new drug that is come into the market now.....let me give my cancer patient they say it very good for this, and then the cancer patient then may react to the drug, this kind of technology will help him to be able to access the patient......whatever it is that he needs to do, He doesn’t have to wait till the next clinic day to be able to have access to the doctor.....so real time solutions are provided for real time problems” (policy maker: Nigeria).
Caregivers and health professionals cited nature of the job and problems with electricity as barriers to using technology. Quote 21: “… sometimes you are in a briefing you can’t use phone, you have to keep the phone away from you and all that, or if it’s at work I will definitely want to put my phone on silent so I had to put the phone on silent or I will just leave it in the drawer of the office” (caregiver: Nigeria).
Quote 22: “… when you are at the party or when you are in at burial or in church... because it doesn’t mean that a health professional is supposed to work 24 h in 360 days all that. You may be in a vehicle, you may be in a place when its noisy, when you call me when am on a busy street, I can’t get my phone out” (health professional: Uganda).
Quote 23: “You may have distress or concerns with your patient at night and when you call them at such time, your phone may not have airtime or even run out battery...yah” (caregiver: Zimbabwe).
Quote 24: “… it is our day to day life even if you don’t have airtime that is why they make it easier, in case of emergency you can just borrow airtime, then there is power bank so you can charge your phone” (caregiver: Nigeria).
Quote 25: “There some that you cannot afford, in some cases where you might not be able to afford, of course ok now for example me I think a smart phone would provide wider range of options and operations.... when you think about the cost compared to a normal phone, and yet most people can afford the normal phone” (caregiver: Uganda).
Quote 26: “… some applications are a little bit complex, and people don’t grasp to use” (pancreatic cancer patient: Uganda).
Quote 27: “Because some will be the elderly, and they won’t be able to send the data and the like, but if they are young adults, well it is something that is really good, elderly people, are just able to receive a call and say ‘hello’” (health care professional: Zimbabwe).
3: Current vision for digital technology to support health and palliative care Policy makers outlined several things they envisioned in terms of using technology in the near future. Quote 28: “… integration of data so that at each level of health care system they should be able to access patients records.....Is that whichever health worker depending on whichever level they are on, you know the structure from community to health facility, district whichever person which is on those different levels should be able to access data on particular things as easy as possible of course depending on the authorization bit” (policy maker: Uganda).
Quote 29: “...we need easy to use technologies to collect data in the patients’ homes hand held devices is system that is integrated, so that information at patient level in the home can be collected. But that is integrated with for example the pharmacy, because there is a link between care and medications, but that also incorporates all the different aspects of our care palliative care, pain symptoms, psychosocial, spiritual issues” (policy maker: Uganda).
Quote 30: “Well, there is what is called the DHIS … which is national system, the electronic national system that is used nationally where all facilities are expected to comprehensive report on all the diseases, of course limited to the … number per facility, what they are,,, the diagnosis they are making and all that, so we have that system and it is in the planning for every state of it is a national we have disease” (policy maker: Nigeria).
Quote 31: “… In the next 5 years or so that we shall be digital and you can get all information on your phone, at the tip or stroke of the button that you can pick information very quickly, so that’s the kind of vision. Also, that you can get information about a particular patient by simply going into the computer, yeah that’s the vision that we are having that everything is going to be digital, very easy and available to anybody. So that you don’t have to come all the way to the facility and tell me about something I can get from a phone” (Policy maker: Uganda).
4. Digital technologies in the generation, reporting and receipt of data Health professionals and policy makers stated that digital technology can be used to generate and report data from grassroots to national level, however some health professionals do not appreciate the value of this. Quote 32: “… at the grass roots, even when we have these tools or these avenues to capture the data, probably those people, at those points of care, they probably do not understand the need, the importance of data. So, as long as they fill in these other, what they call basic or routine information, they don’t go down to informing other things, like for example, use of substances, use of alcohol, they ignore those. So most of the time, they’re told to return back and complete those blanks” (Policy maker: Uganda).
Demands for greater granularity in data to increase its utility in decision making. Quote 33: “I don’t think so, just knowing the amount of morphine usage is enough, data should also contain the number of health care workers, are they qualified?, what kind of education level do they have, where did they train, are they able to do home care services, where did they find their patients, and also getting the view of the patient, if I don’t have all that information, I would not say the data I am collecting is adequate and can real inform my decision” (Policy maker: Uganda)