2.1 Best practices from Uganda, Zambia and Ethiopia
The partner institutions of the RADIC consortium are located in Kenya, Tanzania, Zanzibar and Rwanda. In these countries common health concerns are stroke, HIV and tuberculosis (TB) [7]. Rehabilitation services are essential for addressing the physical, cognitive, and psychosocial needs of individuals living with stroke, HIV, and tuberculosis promoting their functional independence, and improving their overall well-being. In all three countries, the need for rehabilitation services for stroke, HIV and tuberculosis is exacerbated by various factors, including limited access to healthcare facilities, shortages of trained rehabilitation professionals, insufficient funding for rehabilitation programs, and social stigmatization of individuals with these conditions. Addressing these challenges and improving access to comprehensive rehabilitation services is crucial for reducing disability, promoting functional recovery, and enhancing the overall health outcomes of individuals affected by HIV, TB, and stroke in Kenya, Tanzania, Zanzibar, and Rwanda.
For this reason, we would like to present three best practice examples in which Digital Rehabilitation is used to build the bridge in order to increase access to rehabilitation, create a peer community without stigmatization, improve therapy adherence and lower the rehabilitation expanses.
Note: Digital Rehabilitation interventions can be also used in other areas than described in these examples. That means that Digital Rehabilitation interventions can be also applied for assessments, the diagnostic, as an intervention, to monitor the client’s condition/symptoms and to evaluate the rehabilitation outcomes. See chapter 1 and/or 6 for more information.
Best Practice number 1:
The first best practice example is based on the publication from Teriö et al. and Kamwesiga et al. [8,9].
Mobile phone-based intervention helps to improve access to rehabilitation – A case example from Uganda
Challenge
The prevalence of stroke in Uganda is increasing. Despite the increased disease burden, the country has no national strategies or programs for the prevention or treatment of non-communicable diseases, including stroke. In Uganda, 72% of households live within five kilometers of a health facility. However, utilization of facilities is limited due to factors such as lack of transportation, poor infrastructure, lack of staff and lack of incentives for staff. Medical care is provided at a specialized tertiary level by the National Referral Hospitals, such as Mulago Hospital in the capital Kampala, where people with strokes are admitted. Secondary care is provided by the Regional Referral Hospitals, which are less specialized. Primary care is provided by the health services in the communities, whereby the service capacity varies. The private healthcare sector is responsible for around 50% of healthcare services.
Opportunity
Digitalization is growing in sub-Saharan Africa. There are currently over 1000 mobile health services in low-income countries providing health content and diagnostic services. One goal of the Sustainable Development Goals introduced by the UN focuses on healthy living and promoting well-being for all. Against this backdrop, the use of mobile phones can increase quality, reduce costs and extend the reach of healthcare to the benefit of millions of people. In East African countries, the use of mobile phones has been rapidly adopted. In sub-Saharan Africa, 444 million people had a mobile phone subscription in 2017. A mobile broadband network now covers most urban areas, meaning that infrastructure-related exclusion is greatest in rural areas. In Uganda, the use of mobile phones has gradually increased across the country since 1995 and in 2017, the number of mobile phone connections was 58 per 100 inhabitants.
This shows that there is potential for the successful use of mobile phones to improve accessibility of health services, especially due to the increasing societal demand for technologies use in daily activities. The potential of using digital technologies including cell phone solutions in stroke survivors has already been reported.
Solution
The F@ce intervention was implemented in Uganda in 2016 and aims to increase functioning in daily activities for persons living with the consequences of stroke, as well as participation in everyday life for persons with stroke and their family members.
Client’s profile who could benefit from F@ce intervention
- Adults with stroke
- People living in a rural part of Uganda
- Access to and ability to use a mobile phone
- Willing family member or caregiver to support the client
F in the F@ce intervention stands for (Face-to-face between the Occupational Therapist (OT) and the client), @ for Assessment, C for Collaboration and E for Evaluation. In F@ce intervention, digital components are combined with face-to-face sessions. During the intervention, the three set activity targets were to be delivered to the client every morning and evening by short message service (SMS). The morning SMS was a reminder to perform the activities during the day. In the evening, the client was supposed to respond in three separate SMSs by scoring the performance of the activity between 0 (has not performed the activity) and 5 (did the activity well). If the clients had scored 0 or had not responded to the SMS, a red flag (a message that informed of a non-performed activity) was sent to the OT who should call the client the following morning to solve the problem. Additionally, the clients were to receive calls from the OT twice a week as a follow up.
Technology reminding and monitoring
- The clients use a usual mobile phone to receive reminders, phone calls and sending text-messages
- Low internet literacy is needed to receive and send text-messages
- For the rehabilitation professional, the text-messages serves as a tool to monitor the rehabilitation and to identify performance gaps so they can help to close those gaps
Key characteristics of F@ce Intervention
- Blended intervention, mixing face-to-face session with online parts
- Intervention is tailored to the needs of the clients to improve the functioning of activities of daily living
- Involving family members or significant others
- Formulating three goals for the intervention in daily activities and transferable to the home based environment
- Family members were informed about the client’s target activities and the planned strategies for reaching these targets
- Use of a client reported outcome measure to monitor and evaluate the rehabilitation
- Enables change through setting goals and formulating strategies on the F@ce web-platform
Impact of F@ce intervention
- Intervention could increase accessibility, affordability, and continuity in the rehabilitation process after stroke but there is still a lack of research in this area
- F@ce seems to be acceptable for clients and family members
- Indications that the intervention increases functioning in daily living and self-efficacy
Challenges faced while implementation
- Lack of engagement among local colleagues or other medical personnel
- Non-compliance by clients and the family members
- Doubts on how beneficial the intervention is
- Unexpected server breakdown/technical problems
- Lack of knowledge about function of technology
- Lack of digital health literacy
Key message for implementation
- Services need to be carefully integrated into the local context
- Different responsibilities on different levels in the implementation is needed, thus enhancing the creation of supportive working culture
- Rehabilitation professionals and motivated clients acting as facilitators
- Empowering leadership à facilitators organized workshops characterized by open, non-hierarchical discussions
- Motivation of clients and rehabilitation professionals could be increased through monetary incentives
- Information about the benefits of the innovation should be given to the clients and family members before starting the intervention
- Further research with larger samples is needed to proof the effectiveness of the intervention
Best Practice number 2:
The second best practice is based on the publication from Simpson et al. [10].
Creating an community with digital support groups for adolescent pregnant women living with HIV: A best practice example from Zambia
Challenge
Routine HIV testing during pregnancy is often the first time young women learn their HIV status. While this has significantly improved antiretroviral treatment (ART) in southern africa, pregnant adolescents face challenges accessing HIV services and are less likely to utilize them. Those diagnosed with HIV before or during pregnancy are more likely to be non-adherent to ART. Stigmatization during pregnancy, coupled with managing HIV alongside motherhood, can negatively affect maternal health and the baby's development. Concerns about HIV status and testing increase psychological distress in pregnant women.
Opportunity
Improving social support has been shown to have a positive impact on adherence to medication across a range of chronic illnesses for vulnerable populations. There is evidence to suggest that support groups and peer mentorship are effective interventions for delivering psychosocial support to pregnant women living with HIV. In particular, where there are significant barriers to attending face-to-face counselling or support groups- technological interventions have an important place. Mobile phone-based interventions can overcome barriers that people have to accessing critical social and psychosocial support. Mobile phones can be used as an educative tool, and toward its potential as a device for behavior change and psychosocial support for populations living with HIV.
Solution
A mobile phone-based virtual peer support group was introduced in Zambia in 2018. The aim of the support groups was to counteract the negative effects of social isolation and stigmatization on mental health that many people infected with HIV are exposed to.
Characteristics of setting in Zambia
- The healthcare needs in each community are serviced by one government clinic, which provides both in- and out-client services. The health facilities were initially designed for smaller populations, but due to rural-urban migrations and the formation of informal settlements, the populations and catchment areas served by the local government health facilities have grown.
- The average HIV prevalence in the communities where the intervention was introduced is 12%.
Client’s profile who could benefit from intervention
- Pregnant women with HIV
- Access to and ability to use a mobile phone
- Women who want to access HIV services without the fear of stigmatization
Key characteristics of digital peer-support group
- A peer- support group consist of 6–8 clients and the support lasted for 4 months over the peri-partum and post-partum period
- Digital groups are formed via Rocket.Chat®
- Rocket.Chat® ensures privacy and anonymity for users
- Clients could freely communicate amongst themselves anonymously
- One trained moderator monitored the conversation
- The peer-support groups could be used via a smartphone (ITEL 1503 mobile devices, running the Android 4.4 KitKat® operating system)
- Topics discussed in the peer support group focused on social support and relationships, stigma, HIV knowledge and medication adherence
- Regularly digital sessions with a health professional were held to address specific medical questions from clients
Implementation
During a launch event, clients were given a mobile smart phone device with pre-loaded mobile data. They were asked to choose a nickname and remain anonymous for the duration of the intervention. They were encouraged to keep the content confidential and not to share their phone. The support groups used the open-source technology, Rocket.Chat®. This platform ensured clients could not share numbers, forward messages, take or send photo or video content. The team could administer the groups and monitor conversations.
Groups were facilitated by a trained Peer Mentor who delivered a curriculum of topics developed in consultation with the project team and key stakeholders. There were a number of sessions where health professionals – a gynecologist, a nutritionist and a general practitioner - were invited into the groups to run a session on a particular topic, where clients could ask specific medical questions. At the end of the groups, clients were asked to keep their phones, but the messaging platform was deleted from their phones in order to prevent ethical and information accuracy concerns surrounding conversations that were unmonitored or not facilitated.
Challenges while implementation
- Tensions with partners of woman over participation in the project.
- Poor reading and writing skills of the clients.
- Technical problems/repairs on the phone: clients were frustrated when "phones were delayed in coming back when they went for repairs".
- Not all groups had active facilitators, which resulted in topics remaining superficial.
Key message for implementation
- Clients were able to use the platform, even if their literacy levels or English language skills were poor. The speech-to-text and spell check functions facilitated such interaction.
- Anonymity of the intervention was a key aspect for using the peer-support group.
- The peer-led structure of the social support groups was an important factor in acceptability as it encouraged a democratic and unintimidating space for women.
- The design and user-friendliness of the phone make the intervention easy to use.
- Face-to-face services must be designed to complement digital provisioning such that those who are unable to participate in such interventions are still well served.
- The population is also at high risk of Intimate Partner Violence. In Zambia, 43% of women aged 15–49 years report lifetime experience of physical and/or sexual IPV and 27% of women reported physical and/or sexual IPV in the past 12 months. The introduction of the mobile phone into such a high-risk environment could lead to jealousy or suspicion, changing the power dynamics in the household. Hence, it is critical that a team of trained professionals are able to engage partners or other family members in the consent process in order to safeguard clients.
Best practice number 3:
The third best practice example is based on the publications from Manyazewal et al. [11–13].
Digital Medication event reminder results in lower costs for health care in people with Tuberculosis: A case example from Ethiopia
Challenge
TB is still mostly found in poor areas and affects people who don't have much money the most. The medicines used to treat TB work well, but they are very expensive for clients and their families because they have to go to special places to get the medicine. This makes it hard for them to stick to the treatment plan, and sometimes the treatment doesn't work, leading to the TB germs becoming resistant to the medicine. This can make the disease spread to other people. The current TB treatments last for a long time, at least six months for regular TB and even longer for drug-resistant TB. In many places, clients have to go to a clinic every day to take their medicine under the supervision of a healthcare worker. This makes it difficult for clients and their families because they have to spend a lot of money on transportation, food, and a place to stay near the clinic.
Opportunity
A digital medication reminder monitor (MERM) that monitors therapy in tuberculosis clients could have the potential to address these issues. The MERM device (Wisepill Technologies) includes an electronic module and medication container to record adherence, store medication, provide audible alerts and color-coded visual light signals (i.e., green, yellow, and red) to remind clients to swallow and refill their medication, and allow physicians to digitally monitor adherence.
Solution
The 15-day TB medication supply (HRZE fixed-dose combination therapy of 15 doses) in an electronic pillbox device (evriMed500 digital medication monitoring and reminder device manufactured by Wisepill Technologies, South Africa) to self-administer, see picture below. The intervention was introduced in 2020 in Ethiopia in order to reduce travel expanses and to improve therapy adherence in clients with Tuberculosis.
Figure 1: evriMed500, medication reminder
Client’s profile who could benefit from intervention
- People older than 18 years with Tuberculosis
- Out clinic status
- People not living close to a TB clinic
- Approved to follow the 2-month TB medication therapy recommended by the WHO [14].
Key characteristics of the intervention
- A digital medication reminder (MERM device, see picture 1) was given to the clients with 15 doses of medication in a TB clinic.
- Clients could return home for the next 15 days.
- The device has three indicator light-emitting diodes (LEDs) that are visible through the front of the container for the daily medication reminder (green LED), medication refill reminder, (yellow LED), and low-battery alerts (red LED). It also has a buzzer that is activated during the alarm sequences, and it emits a soft tone when the container is opened or closed.
- After 15 days, clients return to the TB clinic, where they counted any remaining tablets in the pillbox, download the pill-taking data from the device, evaluate the functionality of the device and troubleshoot as needed, and perform the urine isoniazid test.
- Clients could consult the healthcare provider in cases of medical illness or any adverse events outside of a scheduled visit before the next appointment.
- The phone number of the healthcare provider following their TB condition will be written at the backside of their appointment cards.
Implementation
- Clients were informed on how to use the device and given an instructional leaflet with client-friendly explanatory graphics prepared in the national language that outlined the procedures.
- Clients received a 15-day TB medication supply (HRZE fixed-dose combination therapy of 15 doses) in the MERM device to self-administer.
- Clients returned to the clinic every 15 days, at which point a clinician counted any remaining tablets in the pillbox and connected the MERM module with the computer.
- Along with the client, the clinician downloaded pill-taking data from the device to the computer and reviewed the event reports over the previous 15 days. Any missed event where no ingestion occurred over a particular prescribed ingestion period in the event report was evaluated against any remaining tablets in the pillbox and discussed further with the client for confirmation.
Key message for implementation
- The usability of the MERM device was high.
- Clients who used the MERM device visited the health care facility every 15 days and this significantly reduced vulnerability of clients to the underlying barriers including costs for travel, food, and accommodation for daily in-person visits.
- TB clinics in the study already had computers in use prior the study. The MERM software was set up on computers that had already been in use in TB clinics or similar facilities.