A research report submitted to the Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, in partial fulfillment of the requirements for the degree of Master of Science in Physiotherapy Johannesburg, 2017 / This was a qualitative study design using in-depth caregiver interviews. Ethical clearance was applied for at the University of the Witwatersrand and permission was also obtained from hospital management where the study took place before the commencement of the research project. Interviews were conducted with the caregivers of patients discharged from the hospital where the study took place, who met the inclusion criteria. The interviews took place at the hospital three months post discharge. Verbal and written consent was obtained from all the stroke survivors and caregivers for participation and audio recording of the interviews. The researcher collected all the demographic data from the stroke survivors including BI score. The in-depth interview was conducted by the researcher using an interview schedule. The interview was informal, with open- ended questions, carried out in a conversational style in the participants’ choice of language Afrikaans, English or Setswana. Initially the interview started with structured questions and probing questions followed as necessary for more information or clarification thereof. Audio records and field notes were made during the interview by the researcher. The audio records were transcribed and translated word for word afterwards by the researcher. The data was analysed by the researcher and a second analyser using the general inductive approach and consisted of five main steps. Results: Seven interviews were conducted. The average age of the stroke survivors was 55.8 (±15.03) years, four were female and three were male, five had right sided strokes and two left sided. The average BI score was 47.1%. The average age of the caregivers was 47.8 years (±13.96) years, five were female and two were male all of them were closely related family members. Three were unemployed, two self-employed, one employed and one a pensioner. The most common enablers of adherence to home exercise programmes are: self –motivation, external motivation from friends and family, daily routine, spirituality, carers’ ‘attitudes and desire’ and knowledge. The most common barriers of adherence to home exercise programmes are: general health issues, other responsibilities, lack of family and social support, caregiver burden and stress, low self-efficacy and mood, and fear of falling. Conclusion: It is evident from this study that adherence to home exercise programmes is multifactorial and does not only relate to the stroke survivor alone. Caregivers have a lot of responsibilities and experience emotional strain and burden and this has an influence on stroke survivors’ adherence to home exercise programmes as they rely upon caregivers for assistance. When addressing adherence both the stroke survivor and the caregivers needs to be considered. Being aware of the potential enablers and barriers of adherence to home exercise programmes can give health care professionals insight in how to optimise adherence and possibly improve functional ability and the quality of life of stroke survivors. / MT2017

Stroke survivors in low-resource settings like Rwanda often face high levels of disability, and access to rehabilitation care is limited. To effectively allocate resources, it is crucial to understand and address the most significant concerns of stroke survivors and explore contextually appropriate approaches to post-stroke care. We conducted a needs assessment survey of 337 patients from six hospitals in Rwanda, collecting data at discharge and three months post-stroke. Rwandan stroke survivors have similar unmet functional needs as those in high-resource settings. However, over half of the participants still reported moderate to severe mobility, usual activities, and social/recreational activities needs at three months post-discharge. Stroke survivors indicate that limited access to services was a significant barrier to addressing these needs. Community-based interventions may be an important method for addressing these needs; however, rehabilitation services are limited, warranting the need to consider alternative strategies to address these needs. The thesis explores the potential of involving community health workers (CHWs) in providing rehabilitation interventions for stroke survivors in community settings. Although the effectiveness of CHWs in providing physical rehabilitation interventions in low-resource settings remains uncertain and sustainability of these interventions outside the studied context is also unclear. Subsequent the use of CHWs for post-stroke rehabilitation is a worthwhile endeavor. To facilitate the implementation of CHW-delivered interventions, two crucial steps were considered: the development of an intervention and establishing an operational team that will ensure implementation success. A multi-phased process was used to design a new evidence-informed post-stroke community-level mobility intervention suitable for low-resource settings. The Rehabilitation Treatment Specification System enabled the intervention design and description toward facilitating its accurate replication. The next step is to test the intervention’s feasibility, effectiveness, and implementation in low-resources settings. / Thesis / Doctor of Philosophy (PhD) / The issue of post-stroke disability is significant in Rwanda due to limited resources for stroke survivors. To improve the resources available for stroke survivors in such settings, it is important to understand their specific needs and explore alternative approaches to provision of interventions. We surveyed 337 patients from six hospitals in Rwanda to describe their functional unmet needs after stroke and at three months. Within 90 days of stroke, Rwandan stroke survivors have more moderate to severe functional needs in almost all usual activities, which is twice compared to post-stroke unmet needs for stroke survivors living in areas with post-stroke resources. Three months after leaving the hospital, over half of the participants still have moderate to severe functional needs in mobility and other usual activities, working, and social/recreational activities. Rwandan stroke survivors identified that not being able to use therapy services made it difficult to address these needs. These data indicate it is crucial to focus on community-based interventions to address the needs of stroke survivors. In my research, I investigated whether Community Health Workers (CHWs) could administer rehabilitation treatment in resource-limited areas. Although the effectiveness of physical rehabilitation by CHWs is uncertain, there is potential for CHWs to participate in delivering rehabilitation. It is worth considering the use of CHWs for post-stroke rehabilitation. In order to successfully implement CHW-delivered interventions, two important steps were considered. First, an intervention was developed. Second, an operational team is being established to ensure the intervention’s success. The process of designing a new evidence-informed post-stroke community-level mobility intervention suitable for resource-limited areas, consisted of multiple phases. The Rehabilitation Treatment Specification System was used to design and describe the intervention accurately so that it could be replicated easily. The next phase involves examining if the intervention is practical, efficient, and can be successfully implemented in areas with limited resources.

This thesis aims to explore the nature of emotion work within the context of care occurring in adult stroke survivors (18-59) and their carers situated at home in Nakhon Sawan Province, Thailand. It also investigates how their roles were constructed after the stroke event. An ethnomethodological approach facilitated the understanding of the sense-making processes in daily routines. Data collection was comprised of semi-structured interviews and observations which were gathered from a sample of twelve pairs of stroke survivors and carers, 24 participants in all, over a period of three months. Data were analysed by a thematic analysis approach. Stroke survivors’ belief about the cause of stroke and its effects on their attitude towards themselves and carers, and carers’ accounting for their care of stroke survivors emerged as two overarching themes derived from the interview data. The first theme illustrates that stroke survivors described difficult experiences during the first six months post stroke as the turning point of their lives. They searched their life experiences to create their current status within society. A self-evaluation of their health created a positive or negative attitude towards themselves, which affected their emotions in everyday living. In all cases the stroke survivors’ appreciation of carers’ help was significant. For carers, family relationships and expectations influenced their sense of responsibility and expectations. The feeling of gratitude, the morality of Buddhist values and a sense of duty were their underlying reasons for taking the caring role. Carers’ expectations of stroke survivors’ ability to perform routine activities were influential in managing their own feelings and actions in everyday life. The influence of neighbours reinforced carers’ ideas of moral standards of caring for stroke survivors. Emotion management is the third theme. Emotion work is involved in stroke survivors’ and carers’ everyday affairs which helped to keep their current life situations in balance and assist them in continuing to live as normal. Their life experiences and specific feeling rules (the feeling of gratitude and the sense of responsibility) govern the achievement of their emotion work. A differentiation between male and female roles also influenced their emotion work. Stroke survivors and carers presented how emotion work served to maintain their interpersonal relationship and to minimise difficult conditions in ordinary living. A conceptual framework of the process of emotion work is presented to facilitate understanding of how they engage in and accomplish emotion work during caring interactions. Emotion work emerges as a means to show their gratitude to each other and represents one of several ways to fulfil their Buddhist beliefs in the law of karma. They exchange emotion work for the values of caring and gratitude. These findings will be beneficial to stroke survivors and carers for dealing effectively with emotional problems in day-to-day life. Community nurses and other health professionals will gain a deeper knowledge of emotion work in order to assist them in providing holistic care for stroke survivors and carers. The findings will also be of interest to health policy makers to enable them to organise information and home-healthcare activities in future stroke care and health promotion strategies in rural communities in Thailand and elsewhere.

Class of 2016 Abstract / Objectives: To compare health-related quality of life (HRQoL) among stroke survivors by gender and race/ethnicity to identify gender and racial/ethnic disparities. Methods: This study adopted a retrospective cross-sectional research design utilizing data from the 2013 Behavioral Risk Factor Surveillance System (BRFSS), a state-based telephone survey administered to noninstitutionalized United States citizens. Inclusion criteria for this project were adults aged 50 or older who: participated in the 2013 BRFSS survey; indicated they had ever been told by a provider that they had experienced a stroke (of any type); and reported data on seven questions aimed to assess HRQoL (general, physical, and mental health; life satisfaction; emotional support; activity limitations; and sleep quality). Chi square tests and logistic regression models were used to compare HRQoL responses by gender and race/ethnicity. Results: In the 2013 BRFSS database 20,391 of 491,773 respondents reported experiencing stroke. Of those, 16,561 met the inclusion criteria. The majority were female (61.1%) and identified their race/ethnicity as white (78.6%). Logistic regression analysis revealed females were more likely than males to report worse outcomes across the following three HRQoL domains: activity limitations (AOR=0.752, 95% CI 0.617-0.918); mental health (AOR=1.398, 95% CI: 1.110-1.761); and general health (AOR=0.764, 95% CI: 0.588-0.993). Minority populations (African American, Hispanic, and Other) were more likely to report activity limitations (AOR=0.766, 95%CI: 0.614-0.955) and fair/poor general health (AOR=1.837, 95%CI: 1.324-2.549). Conclusions: Analysis identified gender and racial/ethnic disparities in HRQoL indicators among stroke survivors. Females and minority populations were more likely to report poorer outcomes.

Stroke is a leading cause of disability worldwide, and access to rehabilitation is crucial for recovery. This study examines the potential of digital technologies to improve the rehabilitation experience of stroke survivors in Scania, Sweden. The use of digital tools and telerehabilitation in stroke rehabilitation in Scania remains largely unexplored. Through qualitative interviews with 12 stroke survivors, 1 stroke survivor relative, and 6 healthcare professionals, this study identifies four key themes that play a significant role in the rehabilitation process: Access to care and rehabilitation, Motivation, Psychological and emotional needs, and Social support net. Based on these findings, the study proposes several "digital suggestions" to improve the rehabilitation process, including utilizing digital physio- and occupational therapy and improving alignment between various digital systems within the region. The study emphasizes the importance of individual adaptation in stroke rehabilitation, which aligns with the overarching goal of Swedish healthcare to provide patientcentered care. The findings of this study can inform future work with digital opportunities in Scania's stroke care and rehabilitation, potentially leading to better outcomes for stroke survivors.

No / Aims and objectives To (1) investigate the organisation, provision and practice of oral care in typical UK stroke units; (2) explore stroke survivors', carers' and healthcare professionals' experiences and perceptions about the barriers and facilitators to receiving and undertaking oral care in stroke units. Cerebrovascular disease and oral health are major global health concerns. Little is known about the provision, challenges and practice of oral care in the stroke unit setting, and there are currently no evidence-based practice guidelines. Design Cross-sectional survey of 11 stroke units across Greater Manchester and descriptive qualitative study using focus groups and semi-structured interviews. Methods A self-report questionnaire was used to survey 11 stroke units in Greater Manchester. Data were then collected through two focus groups (n = 10) with healthcare professionals and five semi-structured interviews with stroke survivors and carers. Focus group and interview data were recorded, transcribed verbatim and analysed using framework approach. Results Eleven stroke units in Greater Manchester responded to the survey. Stroke survivors and carers identified a lack of oral care practice and enablement by healthcare professionals. Healthcare professionals identified a lack of formal training to conduct oral care for stroke patients, inconsistency in the delivery of oral care and no set protocols or use of formal oral assessment tools. Conclusion Oral care post-stroke could be improved by increasing healthcare professionals' awareness, understanding and knowledge of the potential health benefits of oral care post-stroke. Further research is required to develop and evaluate the provision of oral care in stroke care to inform evidence-based education and practice.