Reminder messages as prompts for refilling medicine
Participants in both sites knew the importance of refilling their medication and reported that most of the time, they remembered their appointment dates, and could collect their medicines on schedule. Participants continued using the same reminder strategies they reported at the start of study, such as checking their appointment dates intermittently, and relying on family to remind them. The reminder messages helped some participants play a more active role in developing strategies to remember, and to be less reliant on family. For instance, checking their due date in their patient-held record (called Health passport in Malawi) or their clinic appointment card (South Africa). Several participants acknowledged that they sometimes struggled to remember their medicine pick-up date (due to being forgetful, or a busy lifestyle), and some found the reminder messages particularly helpful.
“I told you that I easily forget things, but the messages were reminding me, especially the clinic day, I tend to forget it, but the messages were reminding me.” (Female, MLW, FGD)
The reminders were useful for the extra prompt it provided, even for those who considered themselves to be strict about their adherence, as expressed by one participant:
“The SMS you guys sent us is very great. It helps because it encourages you to stay on this programme, and without this programme, you know, we are human, you will find ways of dodging the issue, preventing yourself from going to the doctor.” (Male, SA, FGD)
Participants also spoke of a range of obstacles that sometimes prevented them from refilling their medication. In Malawi, these included economic factors, such as having no money for transport for their 3-monthly visits (some travelled for a 2-h journey by public transport) and having no money to purchase their medication privately when the clinic was out of stock. In South Africa, refilling required more frequent visits (monthly or 2 monthly). Due to clinic constraints, this usually required getting in line in the early morning hours before the clinic door opened, followed by long waiting times inside the clinic, clinic congestion and poor interactions with staff, experiences which made them reluctant to visit the clinic on their appointed dates.
Reminders to prompt and motivate taking medicine as prescribed
Participants indicated that for the most part, they take their medicine as prescribed, though several acknowledged it was an ongoing struggle. They continued to use the same reminder strategies as before the study, such as visual cues and daily routine, placing the medication on the bedside or kitchen table so its visible in morning, evening, and mealtimes. They also depended on family to remind them.
A few reported being strict about sticking to their medicine regimen (especially if also taking insulin) and having a sense of pride about being adherent to treatment. Some acknowledged not always taking their medication as prescribed, due to forgetfulness, or being too busy or tired. For them, reminder messages acted as a prompt to take their medications and reinforced the importance of taking medications regularly. A female participant who had been living with diabetes for 5 years (oral medication and insulin), said the messages helped her to become more self-reliant:
“I no longer have this thing where you will find my sugar high. It’s all thanks to the SMSes, they help me. ‘Don’t forget your time’, … ‘Don’t forget your injection time’, ‘Don’t forget time to take pills.’” (Female, SA, IDI)
Similarly, a female participant from Malawi, living with diabetes for 5 years, explained that the messages helped her to keep going with taking her medications despite the side-effects, whereas before she would miss dosages when she felt nauseas.
Even those with good adherence described having the occasional slip-up. A participant described how a perfectly timed reminder message once prevented her skipping her night-time dose:
“I see they encourage us a lot, like this other day I was coming from my business, and I was very tired, and I was just dreaming of getting home, taking a bath and sleep. But before I slept, I just received the text asking me if I have taken my medications. That day I completely forgot; thanks to the message it reminded me, otherwise I could have slept without taking the medications.” (Female, MLW, FGD).
A few participants also appreciated the messages about managing one’s medication in risky situations, such as social gatherings and travelling. They made sure to always keep a spare dose of medicine when travelling or attending social events.
Participants appreciated the importance of taking medicines regularly and long-term, but in many cases, despite their best efforts, their adherence behaviour fell short. They described a range of partial adherence beliefs and practice that had become part of their normal routine. The brief messaging did not seem to shift these beliefs and practices. Such behaviours included, for example, skipping one or more of their dosages on a regular basis, dropping one of their prescribed diabetes medications, taking a break from taking their medicine for a couple of days or even months, or substituting with alternative remedies. The partial adherence behaviours was reportedly in response to difficult and distressing side effects of diabetes medicine that are ignored by clinicians, and insufficient knowledge and counselling to understand why changes are made to their treatment. Other reasons include pill fatigue, beliefs about giving the body “a break” or “cleaning” the body from time to time, valuing alternative herbal remedies, concerns about different chronic medications “clashing” with each other, and suspicion of prescribed medicine with a different appearance. These beliefs and practices seem to be fairly entrenched for some, and often operated in parallel (even in contradiction) to their beliefs in the importance of following doctor’s orders.
Healthy lifestyle messages provide knowledge and motivation for healthy behaviour
“I remember that it is important to reduce fats and reduce sugar. If for example, I crave red meat, I need to ensure that I remove the fats, and to boil it instead of frying, so to assist the medication I take. It will be pointless for me to take pills and eat unhealthy because it might look like the medication does not work.” (Female, SA, IDI)
A male participant who was diagnosed with diabetes the year prior to enrolling in the trial, said he was well-informed about what foods to eat and to avoid, but that the messages were useful as it helped him to better manage his cravings for the wrong foods. The messages also helped with managing household challenges of cooking and eating, such as getting family support for changing to healthier food options. A woman living with diabetes for 6 years, described how the messages helped to persuade her family to use healthier food preparation:
“I was telling me children, please just boil my food, they refuse. They say I am just being stubborn. So, when I received a message from StAR2D talking about fried foods, I showed them and now they are still applying this knowledge whenever they are cooking, and they cook without adding oil”. (Female, MLW, FGD)
Adhering to healthy eating at social events can be challenging and for a couple of participants, the messages helped to remind them to eat in moderation at social events.
“Yes, I started doing exercises instead of just staying [inactive]. And they even told us if you cannot manage to do exercises, you can put music on your phone or switch on the radio and start dancing.” (Female, MLW, IDI)