Support by mobile phone after stroke
Within the research group HELD at the Division of Occupational Therapy, Karolinska Institutet, we have been running a project for a few years: Participation in daily activities in everyday life after stroke - Developing and evaluating a model for a mobile phone supported and client-centred rehabilitation intervention in Uganda funded by Development Research, the Swedish Research Council. The project aims to develop knowledge about how mobile phones or tablets can be integrated into a global interdisciplinary rehabilitation model for people with stroke and their significant others i.e. partner, husband/ wife, children or a friend.
The research program is conducted in Sweden, Denmark and Uganda i.e. countries with varying traditions in using technology and in rehabilitation research for people with stroke. The purpose is to enable daily activities and participation in daily life among people who have had a stroke and their significant others.
One week in the rural areas of Uganda
We have developed a mobile phone supported rehabilitation intervention for people who have had a stroke. We have evaluated the intervention in Uganda's capital Kampala, but most people in Uganda don’t live in urban areas. Hence, we also wanted to study every day life of people with stroke living in rural areas. In the rural areas it is likely that people who have a stroke do not receive any rehabilitation at al. The question is how affected are they by their stroke, and furthermore, how can they perform their everyday activities. Some years ago we began discussing the possibility to address these questions in a meeting with Dr. Rob Newton from the Medical Research Council / Uganda Virus Research Institute (MRC). After some planning and an approved ethical application, Susanne Guidetti (PI), Lena von Koch, Gunilla Eriksson and Julius Kamwesiga, spent a week at the MRC Research Station in Kalungu district about 15 miles from Kampala in October, 2018.
Many interesting and cultural discussions
The research station follows a cohort of 22,000 people in the area regarding births, deaths and health issues. Thus they have registered when people have had a stroke. For a week we lived in a guesthouse in the area and were able to cook our food ourselves. During the days we met the data collectors and together with them we discussed the instruments and questions we intended to use. There were many interesting and cultural discussions before we finally knew what we should use to address both our quantitative and qualitative research questions. On the last day we also had the opportunity to accompany the data collectors in a test of the research protocol together with two people who had had a stroke.
A 48-year-old man
One person was a 48-year-old man who had had his stroke 4 years ago. He was a widower and had 4 sons in the teenagers age. He had no income and had no rehabilitation. "You have to be like a snake and wrap up to find solutions in everyday life," he said. He had great difficulty walking partly because he had insects that lived in his feet. He also had a severe spasticity in his left arm.
Here lived the 48-year-old man. Photo: Susanne Guidetti
A 42-year-old woman
The other person we met was a woman who had a stroke 10 years earlier at the age of 32. She had her family around and had given birth to two children after her stroke. She had been forced to change work because of her half-sided paralysis and now she had a shop in her house. When asked she considered her health as good.
The "mobilizers" work at the research station. They visit the villages and prepare for data collection. In addition they pay those who participate in an interview with a soap or as in our case a sum corresponding to 27 SEK. The research station has both motorcycles and cars that can reach the most distant areas. There are also about 15 data collectors, all trained to gather data in the local language Luganda. Among them are also people who can conduct qualitative data collection, transcribe interviews and analyze data.
Kalungu was really a interesting place to be in as a researcher and to have access to their resources for one week. With the help of the data collectors, we will now be able to collect data on all persons with stroke living in the area. They estimate that they can collect 1.5-week quantitative data and qualitative data before Christmas. We will study how the rehabilitation trajectory has taken these people from their stroke until to today. What activities do they perform today and what were their risks factor for a stroke? For example, it is very unusual for anyone to smoke in Uganda, and you cannot say that the people living here have a low level of physical activity, as the children already have to go far to get water. Their risk factors differ from those in high-income countries.
With this knowledge as a background, we hope to be able to test the use of mobile phones to support rehabilitation in the area in the future.
Susanne Guidetti, the division of Occupational therapy