Struck by stroke - experiences of living with stroke in a rural area in Uganda.

BACKGROUND: The global burden of stroke is increasing and persons with low socioeconomic status are among those worst affected. In Uganda, stroke is estimated to be the sixth highest ranking cause of death. The Ugandan healthcare system is reported to be inequitable, where poorer populations often live in rural areas with long distances to health care. Stroke rehabilitation is often scarce, with less financial and human resources. The aim of this study was to explore and describe the consequences of stroke in daily activities in everyday life for people in a rural part of Masaka in Uganda. METHODS: Qualitative study design. Fourteen persons who had had stroke and were living in their home environment were interviewed about their experiences of having a stroke and managing their lives after the stroke incident. The interviews were analysed using thematic analysis. In addition, sociodemographic data and level of independence (Barthel Index and Stroke Impact Scale 3.0) was collected to describe participant characteristics. RESULTS: Most of the participants had major consequences of stroke and described that they were dependent on support for managing their daily activities. Five themes were identified in the analysis: (1) Accepting and adapting to new ways of managing everyday life, (2) Changing roles and hierarchical positions, (3) Depending on caregiver support, (4) Interrupted care due to economic constraints, (5) Stroke leading to losses and losses leading to stroke. CONCLUSIONS: The consequences of stroke on the persons' daily lives clearly reached beyond the person with stroke, affecting the whole family and their proximate social networks. These consequences included increased burdens on caregivers and a worsened economic situation for all persons affected. Therefore, interventions for stroke management should preferably not only target the individual affected by stroke, but also support the caregivers in the caring and rehabilitation process. Home rehabilitation approaches with a focus on improving health literacy are suggested.

Experiences of participation in everyday activities for people with stroke in Nairobi, Kenya.

BACKGROUND: Stroke is currently one of the greatest causes of disability and death in Kenya. Previous research indicates a lack of knowledge regarding how participation in everyday life is experienced after a stroke in Sub-Sahara Africa. OBJECTIVES: The aim was to explore and describe experiences of participation in everyday life for people who had had a stroke living in Nairobi, Kenya. METHODS: A qualitative study design using semi-structured interviews with nine people who have had a stroke, together with their caregivers. The inclusion criteria were: 1) stroke diagnosis 2) no psychiatric diagnosis, and 3) ability to understand and respond to instructions in English, or local language. All participants were living in the community, members of the Stroke Association of Kenya, and participated voluntarily. The transcribed interviews were analyzed using qualitative content analysis. RESULTS: The participants expressed their experiences of participation in everyday life, along with how resources and barriers affected their participation. Three categories were found:1) A sense of satisfaction at being involved in everyday life, 2) Challenges in doing everyday activities and social participation, and 3) Dependence as enabling or hindering participation. CONCLUSIONS: After stroke, people's experiences of participation in everyday life changed. Performing activities that the person found meaningful added a sense of increased participation and satisfaction. The experience of being dependent in everyday activities and finances appeared to reduce perceived participation. Participation in a group connected to a patient association with like-minded people contributed to a new role, and a sense of belonging.

Health professionals' experiences with the PEDI-UG: What do Ugandan occupational therapists say about the utility and value of the Pediatric Evaluation of Disability Inventory (PEDI-UG) for children with disabilities?

BACKGROUND: The Uganda version of Pediatric Evaluation of Disability Inventory (PEDI-UG) was culturally adapted and validated from the PEDI-US, a tool used to evaluate the functional capability of children with or without disability aged 6 months to 7.5 years in the areas of self-care, mobility and social domains. A group of Ugandan occupational therapists with experience of using PEDI-UG participated in this study to explore the question: What do Ugandan occupational therapists say about the utility and value of the PEDI-UG for children with disabilities? METHODS: A qualitative research design was chosen to explore the participants' viewpoints concerning the utility and value of the PEDI-UG for children with disabilities. Purposive sampling was used to recruit health professionals for the focus group discussions. Focus group discussions were carried out with 18 occupational therapists and nurses. Thematic analysis was performed to establish patterns and themes. RESULTS: Several challenges concerning the contextual use of PEDI-UG were reported. For example, PEDI-UG being culturally adapted in two languages (English and Luganda) makes it difficult for health professionals to use it for children whose caregivers are non-English or non-Luganda speakers. In addition, participants reported adapting the way they asked the assessment questions, struggling with how they interpreted the scores and observing the child's skills if required during PEDI-UG interviews with caregivers. CONCLUSIONS: The findings of this study suggest that health professionals are challenged with the use of the PEDI-UG assessment in diverse cultural contexts and/or languages. These challenges are important considerations for the PEDI-UG translation in different Uganda cultural languages and training health professionals on the use and value of PEDI-UG for children with disabilities.

The everyday life situation of caregivers to family members who have had a stroke and received the rehabilitation intervention F@ce in Uganda.

BACKGROUND: Stroke is increasing in Africa and consequences such as limitations in the performance of activities in everyday life persist a long time. A family member might need to care for and assist the person who has had a stroke. The life situation of these caregivers thereby changes, which could lead to increased workload and new responsibilities in caring for which they lack but request knowledge. During the F@ce rehabilitation program, the caregivers received counseling, which is uncommon in the African context. The aim of the study was twofold; (1) to investigate the perceived caregiver burden and life satisfaction and, (2) to explore and describe the life situation for caregivers to persons that have had a stroke and received the mobile phone supported rehabilitation F@ce in urban areas in Uganda. METHOD: A mixed method design was used. Twelve caregivers took part in a semi-structured interview regarding their everyday life situation and responded to questionnaires on caregiver burden and life satisfaction. Latent qualitative content analysis was used to analyse the interviews. RESULTS: Five categories were identified in the caregivers' experiences of their life situation: Feels obligated but is just a natural commitment; a tightly scheduled everyday life; being the supporting relative; the caregivers´ approach as rehabilitators; and being supported by the rehabilitation intervention. The caregivers rated relatively high on the Caregiver Burden Scale and two thirds of the sample rated their satisfaction with life as a whole as dissatisfying. Further ratings on the Life Satisfaction checklist revealed that the financial, vocational, leisure and family situations were dissatisfying. CONCLUSIONS: Even if it was viewed as a natural commitment to be a caregiver when a family member had had a stroke, the life situation changed substantially for those who took on the caregiving role. Caregiving responsibilities were challenging as well as a heavy workload and a strained financial situation as many were giving up on jobs. The participants felt burdened and rated a low life satisfaction. The F@ce intervention was, however, expressed as valued and involved support and advice in their caregiving situation as well as information on stroke which relieved stress among them.

Corrigendum: The impact of stroke on people living in central Uganda: A descriptive study.

[This corrects the article DOI: 10.4102/ajod.v7i0.438.].

User evaluation of a novel SMS-based reminder system for supporting post-stroke rehabilitation.

BACKGROUND: According to WHO stroke is a growing societal challenge and the third leading cause of global disease-burden estimated using disability-adjusted life years. Rehabilitation after stroke is an area of mutual interest for health care in many countries. Within the health care sector there is a growing emphasis on ICT services to provide clients with easier access to information, self-evaluation, and self-management. ICT-supported care programs possible to use in clients' home environments are also recommended when there are long distances to the health care specialists. The aim of this study was to evaluate the technical usability of a SMS-based reminder system as well as user opinions when using such a system to assist clients to remember to perform daily rehabilitation activities, to rate their performance and to allow Occupational therapists (OT's) to track and follow-up clients' results over time. METHODS: Fifteen persons with stroke were invited to participate in the study and volunteered to receive daily SMS-based reminders regarding three activities to perform on a daily basis as well as answer daily SMS-based questions about their success rate during eight weeks. Clients, a number of family members, as well as OTs were interviewed to evaluate their opinions of using the reminder system. RESULTS: All clients were positive to the reminder system and felt that it helped them to regain their abilities. Their OTs agreed that the reminder and follow-up system was of benefit in the rehabilitation process. However, some technical and other issues were limiting the use of the system for some clients. The issues were mostly linked to the fact that the SMS system was based on a Swedish phone number, so that all messages needed to be sent internationally. CONCLUSION: In conclusion, it seems that this type of SMS-based reminder systems could be of good use in the rehabilitation process after stroke, even in low income counties where few clients have access to Internet or smart phones, and where access to healthcare services is limited. However, since the results are based on clients', OTs' and family members' expressed beliefs, we suggest that future research objectively investigate the intervention's beneficial effects on the clients' physical and cognitive health.

What's in it for me? A process evaluation of the implementation of a mobile phone-supported intervention after stroke in Uganda.

BACKGROUND: The prevalence of stroke in Uganda is increasing. In stroke rehabilitation, information and communication technology has been shown to have potential in improving service delivery in high-income countries but there is limited knowledge of its use and impact in low-income countries. The aim of the study was to evaluate the implementation process of a mobile phone-supported family-centred rehabilitation intervention and to gain knowledge on the mechanisms of impact as well as the contextual factors that might have affected the implementation process and its outcome. METHOD: This was a single-case study design using the integrated Promoting Action on Research Implementation in Health Services framework and the Medical Research Council guidance as frameworks. Quantitative process data was derived from 14 log books used by occupational therapists during the implementation. Qualitative semi-structured interviews were conducted with 12 implementers in different professions, 12 months into the implementation, in order to obtain the primary data. Secondary data was derived from six semi-structured interviews conducted directly after pre-intervention workshops and 6 months later. The framework method was used in the data analysis. RESULTS: In 11 out of 14 cases, the clients were compliant with the intervention. Yet, challenges such as technical problems were reported. The target of conducting 16 phone calls for each client was achieved to 74%. Eight categories emerged from the qualitative analysis of the interviews including: 1) perceptions on facilitation, 2) using scientific and experience-based knowledge, 3) tailoring the intervention, 4) supportive working culture, 5) barriers to the service delivery, 6) implementers' interaction with the intervention, 7) perceptions on motivations and values, and 8) improving the model and enabling sustainability. Mechanisms contributing to the implementation of the intervention included engaged facilitators and motivated participants. Challenges in the client recruitment and poor information dissemination were some of the mechanisms impeding the implementation. CONCLUSIONS: The intervention was partially delivered in accordance with the logic model for the project, where the implementation process was influenced by several barriers in the context such as technical setbacks. However, there were also several mediators in the process driving the project forward, including strong facilitation and motivated participants.

The impact of stroke on people living in central Uganda: A descriptive study.

BACKGROUND: Knowledge about perceived impact of stroke on everyday life as well as rehabilitation needs after stroke in Uganda is necessary to identify and develop rehabilitation interventions. OBJECTIVES: To explore and describe clinical characteristics and functioning during the acute or subacute phase and chronic phase, as well as the impact of stroke on everyday life during the chronic phase in stroke survivors in central Uganda. METHOD: A cross-sectional observational study was conducted on a consecutively included acute or subacute (n = 58) sample and a chronic (n = 62) sample. Face-to-face interviews were conducted to collect demographic information and clinical characteristics. The Scandinavian Stroke Scale (SSS) was used to collect clinical characteristics, assess neurological impairment and define stroke severity. The Barthel Index was used to assess the level of dependence in activities of daily living. In addition, the Stroke Impact Scale (SIS) 3.0 Uganda version was used to assess the impact of stroke in everyday life as perceived by the individuals in the chronic sample receiving rehabilitation. RESULTS: The mean age of the acute/subacute sample was 49 years and 81% had moderate or severe stroke. The mean age of the chronic rehabilitation group was 53 years and 58% had mild stroke. Time since onset in the acute sample was between 2 days and 3 weeks, and time since onset for the chronic sample varied between 3 months and 3 years. Strength, hand function and participation were the most impacted SIS domains in the chronic sample. CONCLUSION: People with severe and moderate stroke were more likely to be admitted to Mulago Hospital. The mean age in the study sample was lower than that in high-income countries. Further knowledge is needed regarding the impact of stroke to develop guidelines for stroke rehabilitation interventions feasible in the Ugandan healthcare context in both rural and urban areas.

A feasibility study of a mobile phone supported family-centred ADL intervention, F@ce™, after stroke in Uganda.

BACKGROUND: There is a lack of evidence-based health services to reduce the impact of stroke in low-income countries at a personal, family or community level. The aim was to evaluate the feasibility of: i) a mobile phone supported family-centred intervention (F@ce™), and ii) the study design for evaluating the effects of the intervention on the perceived impact of stroke; perceived participation in everyday life; and self-efficacy in everyday activities amongst persons with stroke and their families in Uganda. METHODS: The study comprised a pre-post design with an intervention group (IG) receiving the F@ce™ and a control group (CG). The inclusion criteria's were: a) confirmed stroke diagnosis, b) access to and ability to use a mobile phone, c) ability to communicate in English and/or Luganda, d) > 18 years, e) residents in Kampala, and f) a Modified Rankin Scale level 2 to 4. The aim of the F@ceTM was to increase functioning in daily activities for persons living with the consequences of stroke, and participation in everyday life for persons with stroke and their families. The F@ce™ was an eight-week family-centred intervention, which entailed goal setting and problem-solving strategies, daily reminders and self-rated follow-ups of performance by short message service (SMS). Data were collected in the participants' home environment at baseline and after eight weeks. Data on acceptability of the F@ce™ and study procedures were collected by log-books and the responses of the SMS follow ups on the server. The primary outcomes were performance and satisfaction of valued daily activities in everyday life using the Canadian Occupational Performance Measure (COPM), self-efficacy in performance of activities in daily life. RESULTS: The IG comprised n = 13 and the CG n = 15. There were differences between the IG and CG in changes between baseline and follow-up in the primary outcomes COPM (performance component) and self-efficacy in favour of F@ce™. Overall with minor modifications the intervention and the study design were feasible for all participants involved. CONCLUSION: The 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 their family members.

The national burden of influenza-associated severe acute respiratory illness hospitalization in Rwanda, 2012-2014.

BACKGROUND: Estimates of influenza-associated hospitalization are severely limited in low- and middle-income countries, especially in Africa. OBJECTIVES: To estimate the national number of influenza-associated severe acute respiratory illness (SARI) hospitalization in Rwanda. METHODS: We multiplied the influenza virus detection rate from influenza surveillance conducted at 6 sentinel hospitals by the national number of respiratory hospitalization obtained from passive surveillance after adjusting for underreporting and reclassification of any respiratory hospitalizations as SARI during 2012-2014. The population at risk was obtained from projections of the 2012 census. Bootstrapping was used for the calculation of confidence intervals (CI) to account for the uncertainty associated with all levels of adjustment. Rates were expressed per 100 000 population. A sensitivity analysis using a different estimation approach was also conducted. RESULTS: SARI cases accounted for 70.6% (9759/13 813) of respiratory admissions at selected hospitals: 77.2% (6783/8786) and 59.2% (2976/5028) among individuals aged <5 and ≥5 years, respectively. Overall, among SARI cases tested, the influenza virus detection rate was 6.3% (190/3022): 5.7% (127/2220) and 7.8% (63/802) among individuals aged <5 and ≥5 years, respectively. The estimated mean annual national number of influenza-associated SARI hospitalizations was 3663 (95% CI: 2930-4395-rate: 34.7; 95% CI: 25.4-47.7): 2637 (95% CI: 2110-3164-rate: 168.7; 95% CI: 135.0-202.4) among children aged <5 years and 1026 (95% CI: 821-1231-rate: 11.3; 95% CI: 9.0-13.6) among individuals aged ≥5 years. The estimates obtained from both approaches were not statistically different (overlapping CIs). CONCLUSIONS: The burden of influenza-associated SARI hospitalizations was substantial and was highest among children aged <5 years.

Experiences of using mobile phones in everyday life among persons with stroke and their families in Uganda - a qualitative study.

Aim The aim of this study was to describe the experiences and meaning of using mobile phones in everyday life after stroke, among persons with stroke and their family members. Methods Qualitative semi-structured interviews were conducted among 11 persons with stroke and 9 family members 2 months to 2 years after the stroke. The interviews were analysed by using constant comparative grounded theory (GT) approach. Results Seven categories were identified from the analysis of the participants' experiences. The mobile phone: (1) as an enabler of communication and connections with other people, (2) a source of inspiration for agency, (3) structuring routine and activities in daily life, (4) as a facilitator of social and economic wellbeing of an individual or family, (5) promoter of belonging and participation in social relationships, (6) facilitator of reintegration to community living and (7) enabler of family members to feel secure. From these categories, a core category emerged: The mobile phone as a "life line" and an extension of the body enabling connection, belonging and agency to act in a complex everyday life situation. Conclusion The study gives support for the possibility of using mobile phones to facilitate change and community integration in the rehabilitation process after stroke. Implications for Rehabilitation Stroke leads to decreased functioning in everyday life due to impairments, activity limitations and participation restrictions as well caregiver burden. Mobile phones seem to be an accessible and affordable technology used in daily life of persons with stroke and family members and connects them to the needed services and social relationships. The mobile phone technology reduces resource and infrastructural challenges and increases accessibility to rehabilitation interventions. The mobile phone was an important instrument that facilitated the quality of life of persons with stroke and their family members and could increase their participation in rehabilitation interventions.

Cultural adaptation and validation of Stroke Impact Scale 3.0 version in Uganda: A small-scale study.

BACKGROUND: Knowledge is scarce about the impact of stroke in Uganda, and culturally adapted, psychometrically tested patient-reported outcome measures are lacking. The Stroke Impact Scale 3.0 is recommended, but it has not been culturally adapted and validated in Uganda. OBJECTIVE: To culturally adapt and determine the psychometric properties of the Stroke Impact Scale 3.0 in the Ugandan context on a small scale. METHOD: The Stroke Impact Scale 3.0 was culturally adapted to form Stroke Impact Scale 3.0 Uganda (in English) by involving 25 participants in three different expert committees. Subsequently, Stroke Impact Scale 3.0 Uganda from English to Luganda language was done in accordance with guidelines. The first language in Uganda is English and Luganda is the main spoken language in Kampala city and its surroundings. Translation of Stroke Impact Scale 3.0 Uganda (both in English and Luganda) was then tested psychometrically by applying a Rasch model on data collected from 95 participants with stroke. RESULTS: Overall, 10 of 59 (17%) items in the eight domains of the Stroke Impact Scale 3.0 were culturally adapted. The majority were 6 of 10 items in the domain Activities of Daily Living, 2 of 9 items in the domain Mobility, and 2 of 5 items in the domain Hand function. Only in two domains, all items demonstrated acceptable goodness of fit to the Rasch model. There were also more than 5% person misfits in the domains Participation and Emotion, while the Communication, Mobility, and Hand function domains had the lowest proportions of person misfits. The reliability coefficient was equal or larger than 0.90 in all domains except the Emotion domain, which was below the set criterion of 0.80 (0.75). CONCLUSION: The cultural adaptation and translation of Stroke Impact Scale 3.0 Uganda provides initial evidence of validity of the Stroke Impact Scale 3.0 when used in this context. The results provide support for several aspects of validity and precision but also point out issues for further adaptation and improvement of the Stroke Impact Scale.

Effect of selenium supplementation on CD4+ T-cell recovery, viral suppression and morbidity of HIV-infected patients in Rwanda: a randomized controlled trial.

OBJECTIVE: To examine the effect of selenium supplementation on CD4 T-cell counts, viral suppression, and time to antiretroviral therapy (ART) initiation in ART-naive HIV-infected patients in Rwanda. METHODS: A multicenter, double-blinded, placebo-controlled, randomized clinical trial was conducted. Eligible patients were HIV-infected adults (≥21 years) who had a CD4 cell count between 400 and 650 cells/µl (ART eligibility was ≤350 cells/µl throughout the trial), and were willing to practice barrier methods of birth control. Patients were randomized to receive once-daily 200 µg selenium tablets or identical placebo. They were followed for 24 months with assessments every 6 months. Declines in CD4 cell counts were modeled using linear regressions with generalized estimating equations and effect modification, and the composite outcome (ART eligible or ART initiation) using Cox proportional-hazards regression, both conducted with intention to treat. RESULTS: Of the 300 participants, 149 received selenium, 202 (67%) were women, and median age was 33.5 years. The rate of CD4 depletion was reduced by 43.8% [95% confidence interval (CI) 7.8-79.8% decrease] in the treatment arm - from mean 3.97 cells/µl per month to mean 2.23 cells/µl per month. We observed 96 composite outcome events - 45 (47%) in the treatment arm. We found no treatment effect for the composite outcome (hazard ratio 1.00, 95% CI 0.66-1.54) or viral suppression (odds ratio 1.18, 95% CI 0.71-1.94). The trial was underpowered for the composite outcome due to a lower-than-anticipated event rate. Adverse events were comparable throughout. CONCLUSIONS: This randomized clinical trial demonstrated that 24-month selenium supplementation significantly reduces the rate of CD4 cell count decline among ART-naive patients.

Building clinical trial priorities at the University of Rwanda.

After the genocide in Rwanda, the country's healthcare system collapsed. Remarkable gains have since been made by the state to provide greater clinical service capacity and expand health policies that are grounded on locally relevant evidence. This commentary explores the challenges faced by Rwanda in building an infrastructure for clinical trials. Through local examples, we discuss how a clinical trial infrastructure can be constructed by (1) building educational capacity; (2) encouraging the testing of relevant interventions using appropriate and cost-effective designs; and, (3) promoting ethical and regulatory standards. The future is bright for clinical research in Rwanda and with a renewed appetite for locally generated evidence it is necessary that we discuss the challenges and opportunities in drawing up a clinical trials agenda.

Effect of selenium supplementation on CD4 T-cell recovery, viral suppression, morbidity and quality of life of HIV-infected patients in Rwanda: study protocol for a randomized controlled trial.

BACKGROUND: Low levels of serum selenium are associated with increased risk of mortality among HIV+ patients in East Africa. We aim to assess the effect of selenium supplementation on CD4 cell count, HIV viral load, opportunistic infections, and quality of life in HIV-infected patients in Rwanda. METHODS AND DESIGN: A 24-month, multi-centre, patient and provider-blinded, randomized, placebo-controlled clinical trial involving 300 pre-antiretroviral therapy (ART) HIV-infected patients will be carried out at two sites in Rwanda. Patients ≥ 21 years of age with documented HIV infection, CD4 cell count of 400-650 cells/mm3, and not yet on ART will be recruited. Patients will be randomized at each study site using a randomized block design to receive either the selenium micronutrient supplement or an identically appearing placebo taken once daily. The primary outcome is a composite of time from baseline to reduction of CD4 T lymphocyte count below 350 cells/mm3 (confirmed by two measures at least one week apart), or start of ART, or the emergence of a documented CDC-defined AIDS-defining illness. An intention-to-treat analysis will be conducted using stepwise regression and structural equation modeling. DISCUSSION: Micronutrient interventions that aim to improve CD4 cell count, decrease opportunistic infections, decrease HIV viral load, and ultimately delay initiation of more costly ART may be beneficial, particularly in resource-constrained settings, such as sub-Saharan Africa. Additional trials are needed to determine if micro-supplementation can delay the need for more costly ART among HIV-infected patients. If shown to be effective, selenium supplementation may be of public health importance to HIV-infected populations, particularly in sub-Saharan Africa and other resource-constrained settings.