Developing and evaluating a model for a mobile phone supported and family-centered rehabilitation intervention for people with stroke in Uganda - The F@ce program

Introduction

The F@ce research program that we will present in the following has a multidisciplinary perspective with researchers from different fields of health care to build a sustainable rehabilitation intervention process: a prerequisite for better living conditions for people with stroke, specifically in low- and middle-income countries.

The project started out in Uganda as a PhD-project in 2010 and is still ongoing following the recommendation from Medical Research Council (MRC) guidance (1) for evaluating complex interventions and the recommendations in the CONSORT statement for non-pharmacological trials (2, 3) hence including both quantitative and qualitative methodology.

The objective with the project was in phase 1 to develop an intervention and in phase 2 to test the intervention in a feasibility study. We are now in phase 3 and will evaluate and implement a model for mobile phone supported and family-centered rehabilitation intervention in a full-scale trial.

F@ce intervention aims to enable functioning in ADL (activities in daily living) and participation in everyday life among persons with stroke and their families in Uganda.

The program has been funded in all phases by the Swedish Research Council.

Background

The burden of stroke in Africa is rising substantially (4) and stroke causes impairment, activity limitations and participation restrictions, potentially resulting in decreased functioning in everyday life. Uganda Institute for Health Metrics and Evaluation estimates that stroke ranks as the number six cause of mortality in Uganda (https://www.healthdata.org/uganda 2019) after Neonatal disorders, Malaria, HIV /AIDS, Lower respiratory infections, and Tuberculosis.

Stroke can lead to a stressful situation for family members with risk for depression, perceived burden among caregivers (5), social isolation, physical problems and decreased life satisfaction (6). A general aim for most rehabilitation programmes for people with stroke is, therefore, to involve the persons’ family in order to attain maximum participation in ADL (6). It seemed to be of specific importance in the context of Uganda to involve the whole family since Ugandan society is structured based on the extended family.

Most research and evidence on beneficial rehabilitation interventions after stroke originates from high-income countries, but evidence is lacking that such interventions can be implemented with similar outcomes in the context of Sub-Saharan Africa. There is a lack of research on stroke rehabilitation and specifically a lack of knowledge among rehabilitation practitioners. Furthermore, Uganda, like many other low-income countries, have limited rehabilitation services due to poor infrastructure, inadequate numbers of rehabilitation professionals, and poor health support systems in addition to the poor socio-economic situation of the people. In 2016 the World Bank estimated that 41.7 percent of Uganda’s population was living below the extreme poverty line, on $1.90 per day. Furthermore, the majority of the Ugandan population (77%) lived in rural areas where medical rehabilitation was almost non-existent. (https://data.worldbank.org/indicator/SP.RUR.TOTL.ZS).

The Ugandan health care system does not prioritize the rehabilitation of Non-Communicable Diseases (NCDs) of which stroke is one. To increase the accessibility and affordability of rehabilitation services to those that are in need, alternative approaches to provide rehabilitation were therefore urgently needed, which was the point of departure for the project. Thus, new ways of providing sustainable support for rehabilitation efforts to those with limited financial resources were needed. One such new and cheap way of providing rehabilitation was considered to be the use mobile phones as these have shown to be a useful technology for tele-rehabilitation (7). Mobile phones have rapidly been integrated in everyday living among East African citizens and for most people living in large cities it is the only possibility to communicate with people living outside the urban areas. In 2016, there were 420 million unique mobile subscribers in sub-Saharan Africa with a penetration rate of 43%, and it reached to a penetration rate of 67% by 2020.

Phase 1 in the project which is accomplished

Before initiating a development of a rehabilitation program using mobile phones as a tool we wanted to explore and describe the experiences and meaning of using mobile phones in everyday life after stroke among persons with stroke (n=11) and their family members (n=9). This qualitative study constituted the first study initiated in Kampala, Uganda. A grounded theory approach was used in the interviewing and data analysis. The knowledge generated informed the design of the mobile phone supported rehabilitation intervention (8). People with stroke and their family members perceived the mobile phone as a ‘‘lifeline’’ and an extension of the body enabling reintegration into community, belonging, connection and agency to function in and structure a complex everyday life. This study gave support for using mobile phones to increase the affordability and accessibility of rehabilitation for people who have had a stroke and their families.

As research on rehabilitation after stroke and on the situation for people with stroke is scarce in the Sub-Saharan context accordingly there was a lack of culturally adapted assessment instruments to assess the impact of stroke. Most instruments are developed in high-income countries. Therefore, the Stroke Impact Scale 3.0 (SIS 3.0) was culturally adapted and translated into SIS 3.0 Uganda version (Luganda language). Analysis involved reports from expert committees and psychometrically testing by applying a Rasch model. The Uganda version provided support for several aspects of validity and precision but also pointed out issues for further adaptation and improvement of the scale (9). This study was the second study in the project. This newly adapted tool was used thereafter to lessen the knowledge gap regarding the impact of stroke among people with stroke in the Ugandan context.

A cross-sectional study was conducted to identify the clinical characteristics of people in the acute/sub-acute phase after stroke (n=58), and in a chronic phase (n=62). Data on impact of stroke using the adapted SIS 3.0 Uganda version was collected from the chronic sample. Stroke affected a young population with a mean age of 51 years. Of the patients admitted to Mulago Hospital in Kampala, the majority had severe stroke. In the chronic sample, the SIS 3.0 domains Strength, Hand function and Participation were the most impacted. This result increased the knowledge on perceived impact of stroke in everyday life and rehabilitation needs after stroke in an urban area in Uganda (10). Based on these three studies a mobile phone application was modelled during a series of collaborative workshops together with IT technicians, medical experts, and researchers in rehabilitation and healthcare sciences as well as clinically active occupational therapists (OTs) in Uganda from a client-centred ADL-intervention previously evaluated in an RCT conducted in Sweden (11, 12).

Phase 2 which also is accomplished

In the feasibility study (13) of the F@ce intervention a pre-post design was used with an intervention group (IG) receiving the F@ce intervention and a control group (CG) receiving ordinary rehabilitation. The F@ce entailed goalsetting and problem-solving strategies intended to improve valued activities in everyday life. The participants received daily reminders of their goals by SMS. Data were collected in the participants’ home environment at baseline and after eight weeks. The primary outcomes were performance and satisfaction of valued daily activities in everyday life assessed using the Canadian Occupational Performance Measure (COPM), self-efficacy in performance of activities in daily life, and perceived impact of stroke. There were significant differences between the IG (n=13) and CG (n=15) in changes between baseline and follow-up in COPM (performance component) and self-efficacy in favour of F@ce. The participants appreciated the intervention, the SMS reminders and the contact with the OTs involved. The SMS reminders and reports back to the OTs functioned as planned with some minor technical problems. These results support the need for further research to rigorously evaluate the effects of F@ce since the intervention appears to be feasible for persons with stroke and family members although some technical adjustments are needed (13).

There was a close collaboration with IT technicians at Stockholm University and at Makerere University, Kampala, when developing the intervention using mobile phones and data collections procedures by using tablets. A web-based system for managing client data, entering theirs and the OTs phone numbers, the three daily activities per patient as well as the timing for reminders and other data collected was developed using Node.js/PostgreSQL as a back-end and HTML/CSS/JavaScript as a front-end. The evaluation of the system showed that the server needs to be placed locally (14).

A process-evaluation of this feasibility study on the F@ce intervention was conducted in parallel. Methods used were qualitative interviews of persons with stroke, family members and rehabilitation professionals which showed that the intervention was partially delivered in accordance with the logic model developed for the F@ce in the project. Barriers in the context such as technical setbacks influenced the implementation process. There were also several mediators in the process driving the project forward, as facilitation to involved OTs, and motivated participants. However, some recommendations were given for adjustments in a future RCT, as improved information dissemination to stakeholders and the use of a local internet server (15).  

Another qualitative study was conducted describing the family members’ (n=12) experiences of participating in the intervention. The participants expressed that the life situation had changed substantially for those family members who took on the caregiving role. However, the F@ce intervention was expressed as valued and involved support and advice in their caregiving situation as well as information on stroke which relieved stress among them (16).

Additionally, in a cross-sectional study an assessment instrument measuring participation in everyday activities, the Occupational Gaps Questionnaire (OGQ), was adapted and validated into the Ugandan context. Data was collected using the OGQ in a sample from four different districts (n=252) in both rural and urban areas (17). The adapted OGQ Uganda was used in the feasibility study.

Phase 3 of the project which is ongoing

From the studies in phase 1 and 2 we concluded that a full scale RCT was possible and desired to investigate the effect of F@ce in a study with sufficient power and rigorous design that provides the opportunity to draw conclusions about the effect of F@ce for stroke in both urban and rural areas in east Africa. Luckily, this part of the project using mixed designs and methods also received financial support and the project was about to be started in March 2020 at the same time as the Corona pandemic paralysed the world. Consequently, there has been a delay as travels to Uganda was not allowed at times and deemed not to be safe at other times during the pandemic. However, study 1 was initiated due to collaborating researchers in Uganda. The background to study 1 is that about 80 % of the Uganda population live in rural areas. Since there is less access to rehabilitation in rural areas there is a need to investigate the impact of stoke and the recovery process after stroke among people living at the countryside. All our studies conducted in phase 1 were conducted in the urban area of Kampala and surroundings. Study 1 will therefore explore and describe the impact of stroke in daily activities in everyday life for people in a rural part of Uganda.

Further, study 2 will evaluate the Face 2.0 intervention in a RCT; study 3 will explore experiences of taking part in F@ce 2.0 among persons who have had stroke and their family members, and; study 4 will be a process evaluation of the implementation process in line with MRC guidance23

In study 2 the full scale RCT evaluating the F@ce intervention will recruit 174 participants randomly assigned to participate in F@ce (IG) or a control group (CG) receiving usual rehabilitation at two different sites; both an urban (IG+CG) and rural site (CG+IG). The aim is to study the effects of F@ce on persons with stroke regarding a) self-efficacy, b) perceived performance and participation in everyday activities, c), independence in ADL, and d) health care utilization among persons with stroke and their families in urban and rural Uganda. This study is about to start during February 2022 with inclusion of participants in both rural and urban areas.

In Study 3 open-ended interviews with the person with stroke (n=6-10) and family members (n= 6-10) from both rural and urban areas will be conducted after completing the intervention. A grounded theory approach will be used in both data collection and analysis. The aim is to explore and describe the experiences of people with stroke and family members of participating in the F@ce intervention.

Finally, in study 4 a process evaluation will be conducted aiming to evaluate the implementation process of F@ce 2.0 and to gain knowledge on the mechanisms of impact and the contextual factors affecting the implementation process and outcomes. Mixed methods including semi-structured interviews and quantitative process data will be used in a single-case study design.

This program is based on our previous research and lies in the cutting edge of international, multidisciplinary research in the field of rehabilitation after stroke. The program is unique since it intends to support the rehabilitation process back to community living after stroke in a low-income setting. Our point of departure is that mobile phones can be used to increase the accessibility, affordability, and continuity in the rehabilitation process after stroke but there is still a lack of research in this area. Uganda represents a unique context for integrating mobile phone technology in community-based rehabilitation (CBR) as mobile phones are very integrated in people´s daily life. We are looking forward to presenting our results on the ongoing studies in the future.