The perceived impact of stroke and feasibility of a mobile phone supported ADL intervention in Uganda

Background: Rehabilitation after stroke in Uganda is limited due to poor infrastructure, inadequate number of professionals and the poor socio-economic situation of the people. A sizeable number of patients with moderate or severe stroke are admitted to hospitals for initial care, but the majority do not receive rehabilitation. There is a lack of knowledge about the rehabilitation needs of people with stroke and the lack of culturally adapted assessment instruments to capture the perceptions of the impact of stroke on everyday life among those with stroke. The overall aim of this thesis was to build knowledge about rehabilitation needs and develop a model for family-centred and mobile phone-supported rehabilitation intervention enabling participation in Activities of Daily Living (ADL) - among people with stroke and their families living in Uganda. Method: This thesis comprises four studies using qualitative (Study III) and quantitative methods (Studies I, II, IV). In Study I, the Stroke Impact Scale (SIS) was adapted, translated and validated during three phases. The data collection involved 25 participants from three expert committees (phase 1), four translators (phase 2) and 95 people with stroke (phase 3). Analysis involved reports from expert committees and validation through use of a Rasch model. In Study II, in a crosssectional study, data on clinical characteristics was collected from 120 persons with stroke in two separate samples; acute/sub-acute sample (n=58), and for the chronic sample data from the adapted SIS was collected (n=62). Descriptive statics were used to analyse data. In Study III, eleven people with stroke and nine family members were interviewed regarding their experiences of mobile phone use. Grounded Theory approach was used in data collection and analysis. In Study IV, a pre-post design was used, involving an intervention group (n=13) receiving a mobile phone-supported family-centred ADL intervention (F@ceTM) and a control group (n=15). The data was analysed using descriptive statistics. Results: The SIS 3.0 was culturally adapted and translated into SIS 3.0 Uganda version (Luganda). In total, 10 out of 59 (17%) items in the eight domains were changed. The Strength and Memory domains had all items showing acceptable goodness of fit to the Rasch model. There were more than 5% of person misfits in the domains Participation and Emotion. The domain of Hand function had the lowest proportion of person misfits. Reliability coefficient in all domains was ≥0.90, except the Emotion domain (0.75) (Study I). Stroke in Uganda affects a young population with a mean age of 51years. Patients admitted to Mulago Hospital had more severe strokes. In the chronic sample, the SIS 3.0 domains Strength, Hand function and Participation were the most impacted (Study II). People with stroke and their family members perceived the mobile phone as a ‘‘life line’’ and extension of the body enabling reintegration into community, belonging, connection and agency to function in and structure a complex everyday life. The mobile phone could be an important tool to improve accessibility and affordability and could be an alternative to basic rehabilitation service after stroke in Uganda (Study III). Study IV showed differences regarding perceived self-efficacy and occupational performance in favour of the intervention group. The F@ceTM model was feasible in the context of Uganda, and the effect of F@ceTM needs to be evaluated in a larger study. (Study IV). Conclusion: People with stroke and their family members face a challenging everyday life due to the consequences of stroke and a lack of accessible and affordable rehabilitation interventions. In this thesis, knowledge was generated on cultural adaptation of an instrument for use in rehabilitation after stroke as well as the feasibility of using a mobile phone-supported family-centred ADL intervention for people with stroke. The culturally adapted and validated SIS 3.0 Uganda version is a contextually appropriate instrument that will provide valid measures of perceived impact of stroke. The findings highlight the fact that mobile phones are vital tools, commonly available to people, who can connect clients and families to therapists and thereby promote access to rehabilitation interventions. The F@ceTM model was contextually adapted and was based on personal preferences of daily occupations to regain independence in everyday life which seemed to work with minor technical changes