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

Stroke Survivors’ Knowledge of Risk Factors for Stroke and their Post-Stroke Care Seeking Experiences: A cross-sectional study in rural southwestern Uganda.

INTRODUCTION: Stroke is a major cause of morbidity and mortality globally. The aim of this study was to examine the stroke survivors’ knowledge of the risk factors for stroke, stroke warning signs and post stroke care seeking behaviour and signs of stroke in rural southwestern Uganda. MATERIALS AND METHODS: A mixed methods cross-sectional study was conducted from October 2018 to February 2019, with 25 stroke survivors in a general population cohort. Questionnaire were administered with 25 people and in-depth interviews conducted with 10 people. Descriptive statistics and thematic content analysis were applied to the quantitative and qualitative data, respectively. RESULTS: Participants described stroke as: a persistent numbness of a particular body part; a condition due to witchcraft; a sexually transmitted infection (‘obulwadde bw’obukaba’); a disease parents get when a daughter engages in pre-marital sex in their home (‘obuko’). The participants reported that their awareness of their own hypertension and diabetes increased post-stroke. Participants also reported that their smoking prevalence decreased in the post-stroke period. Participants reported experiencing persistent headaches and numbness but did not associate them with stroke. Participants responding to the questionnaire described post-stroke care as biomedical (19/25), traditional (13/25) and for rehabilitation (10/25). The participants also described delays in seeking medical care because either they did not know what to do, or they thought the stroke was a self-limiting brief episode or that they required alternative treatment to biomedical care. CONCLUSION: Misconceptions around the causes of stroke, and poor care seeking behaviour suggests a need for health education to improve community knowledge about risk factors and warning signs of stroke to help reduce incidence and improve post stroke treatment outcomes

Stroke secondary prevention, a non-surgical and non-pharmacological consensus definition : results of a Delphi study

OBJECTIVE: Evidence supporting lifestyle modification in vascular risk reduction is limited, drawn largely from primary prevention studies. To advance the evidence base for non-pharmacological and non-surgical stroke secondary prevention (SSP), empirical research is needed, informed by a consensus-derived definition of SSP. To date, no such definition has been published. We used Delphi methods to generate an evidence-based definition of non-pharmacological and non-surgical SSP. RESULTS: The 16 participants were members of INSsPiRE (International Network of Stroke Secondary Prevention Researchers), a multidisciplinary group of trialists, academics and clinicians. The Elicitation stage identified 49 key elements, grouped into 3 overarching domains: Risk factors, Education, and Theory before being subjected to iterative stages of elicitation, ranking, discussion, and anonymous voting. In the Action stage, following an experience-based engagement with key stakeholders, a consensus-derived definition, complementing current pharmacological and surgical SSP pathways, was finalised: Non-pharmacological and non-surgical stroke secondary prevention supports and improves long-term health and well-being in everyday life and reduces the risk of another stroke, by drawing from a spectrum of theoretically informed interventions and educational strategies. Interventions to self-manage modifiable lifestyle risk factors are contextualized and individualized to the capacities, needs, and personally meaningful priorities of individuals with stroke and their families

CARE CAMPUS. A EUROPEAN CONSORTIUM MODEL TO SUPPORT FORMAL AND INFORMAL CAREGIVING TRAINING

Today’s health and social care systems are facing a challenge in how to effectively address caregiving for ageing populations facing cognitive disorders and frailty. Scholars and policy makers are now identifying a rise of “hidden form of care”, e.g. informal caregiving, as a phenomenon in support for ageing populations. Across Europe for instance, the rise in the older old adult population has led to a rapid expansion of the number of carers, both professional (formal) and informal. The latter, representing mostly family members caring for their loved ones, truly represents a “hidden form of care”. This can be a problem if formal and informal caregivers are not fully integrated into the healthcare continuum or are not given a systematic support to carry out caregiving in a relevant and safe way. There is currently no comprehensive European-wide legal framework and support mechanisms, in terms of training and education for this group. CARE Campus, an EIT Health programme within the Educational Campus Pillar, is a new model of collaboration between academic institutions, the private sector, and the public sector whose main aim is to support the development of a comprehensive training for formal and informal caregivers in Europe. The initial phase of the development encompasses nine (09) online training modules with a quality control process to ensure that the curriculum is evidence-based, compliant with the national and local regulations, and addresses the needs of caregivers across Europe. The objective is to support formal, informal, and family caregivers and reduce the burden on health care systems, whilst improving the quality of care for older adults

Recapturing self-care after stroke or spinal cord injury : Exploration of experiences and evaluation of a client-centred intervention

After stroke or spinal cord injury a person s lived body and life-world commonly change, and suddenly taken-for-granted occupations such as self-care become difficult to perform. This can be a great challenge to living an independent everyday life. In order to enable performance of self-care, occupational therapists commonly initiate self-care training in the early phase of rehabilitation. However there is a lack of well-defined self-care interventions evaluated in research. The general aim of this thesis was to describe the occupational therapists experiences of self-care training and the clients experiences of recapturing self-care after a stroke or a spinal cord injury as well as in close collaboration with occupational therapists to develop a new client-centred self-care intervention (CCSCI) for evaluating the effect of this intervention in a randomized control trial (RCT) pilot study. This research project comprises four studies concerning the recapturing of self-care in a rehabilitation setting during the early phase of rehabilitation (the first week to three months) after a stroke or spinal cord injury. The project used both qualitative methods (Study I-III) and quantitative methods (Study IV). Study I described what characterized the phenomenon of self-care training from 12 occupational therapists viewpoints. Study II identified the lived experiences of recapturing self-care, and Study III the meaning of context in the recapturing processes of 11 persons with stroke or spinal cord injury. Studies I-III are based on interviews and analyzed using the Empirical Phenomenological Psychological (EPP) method, aimed at describing the essence, structure and character of the studied phenomenon based on the participants lived experiences. In Pilot Study IV the aim was to evaluate the effect of CCSCI on (i) activities of daily living (ADL) and life satisfaction in persons with stroke, (ii) caregiver burden and use of informal care and home-help services, and (iii) the feasibility of the RCT study design. Forty persons with stroke were included (Intervention Group (IG) n=19, Control Group (CG) n=21), as well as their significant others (n=16). Study I identified eight therapeutic strategies used by all the occupational therapists to support their clients in taking control of their self-care and their lives again. Study II identified four main characteristics that were presented in all the participants lived experiences: a) becoming familiar with the new body, b) recapturing self-care through trying, c) reclaiming control, and d) feeling uncertainty in the continued process of recapturing self-care. Study III identified six main characteristics of the meaning of context in recapturing self-care: a) support from others, b) expectations in the air, c) extended time, d) new daily structure, e) therapeutic relationship enabling possibility, and f) gradual change in challenge. The main characteristics described in Studies II and III seemed to be prerequisites for the recapture of self-care after stroke or spinal cord injury. Study IV did not show any statistically significant differences between the two groups in outcomes at the three-month follow-up. Comparing clinically significant improvements in ADL on an individual level, 13 out of 14 (93%) participants improved in ADL in the IG, and 12 out of 19 participants (63%) in the CG. The CCSCI appears promising for the recapture of self-care. The feasibility of study design and methods were, in general, favourable for a larger RCT. In conclusion, this research project identified the lived experience and the meaning of recapturing self-care after stroke or spinal cord injury. It can increase the understanding of these phenomena among rehabilitation professionals such as occupational therapists. A well-defined and research-based self-care intervention was developed and evaluated in collaboration between the researcher and occupational therapists. The findings from Studies I-III were integrated in the new CCSCI, evaluated in Study IV. This approach of integrating qualitative studies in a new and well-defined intervention can be viewed as a model for how to implement research into practice, which has been shown to be a challenge in the area of health care

Exploring future possibilities of using information and communication technology in multidisciplinary rehabilitation after stroke – a grounded theory study

Background: Using Information and Communication Technology (ICT) could increase the intensity of rehabilitation, the level of patient activity and participation in everyday life after stroke and is in line with having a person-centred approach. Aim: To explore how healthcare professionals use and could potentially use ICT to enable a person-centred rehabilitation process after stroke. Methods: Six individual and two focus group interviews were conducted with a group of healthcare professionals working within rehabilitation after stroke. A grounded theory approach was used to collect and analyze the data. Results: The professionals described their current use of ICT as well as their vision of how ICT could be incorporated as a tool in rehabilitation for sharing in four categories: (1) Sharing of information, (2) Collaborating from a distance, (3) Having transparency in the documentation and (4) Supporting patients’ use of ICT. Conclusion: Professionals state that using ICT solutions in rehabilitation after stroke could increase sharing between professionals and their patients and increase patient participation in the rehabilitation process. Significance: This study highlights the importance of developing ICT that healthcare professionals could use along with a person-centred approach. The results will be used to develop an ICT-supported multidisciplinary intervention for rehabilitation after stroke

Changes in perceived impact of stroke on everyday life over five years in a rehabilitation sample that received an activity of daily living intervention : A follow-up study

Objective: To compare changes in the perceived impact of stroke on everyday life over time in a rehabilitation sample that received a client-centred activities of daily living (CADL) intervention or usual ADL (UADL) intervention. Design: Longitudinal follow-up of a randomized controlled trial. Methods: A total of 145 persons with stroke were assigned into CADL or UADL. Groups were assessed using the Stroke Impact Scale (SIS) at 3 months, 12 months and 5 years post-intervention. Changes in SIS domain scores over time were compared within and between groups. Results: Changes in the impact of stroke over time were not related to which intervention the groups received. There were no significant differences in the SIS domains or stroke recovery between groups at the 3-month, 12-month and 5-year follow-ups. Despite an increased impact of stroke over time in some domains in both groups, both groups perceived a decreased impact of stroke in the Participation domain at 12 months. Perceived participation was sustained at the same level at 12 months as at 5 years in both groups. Conclusion: These findings stress the importance of access to follow-up rehabilitation interventions 1-year post-stroke to enable participation in daily activities. Such follow-up and enablement would support the use of self-management strategies in the performance of persons’ valued activities, which might be difficult to perform, due to, for example, impact on hand function or mobility. The results of this study emphasize the importance of prioritizing participation in activities that are meaningful from a personal perspective. Lay abstract In this study, perceived impact of stroke on everyday life over time was compared among 145 persons with stroke who received the client-centred or usual activities of daily living intervention. They were followed up at 3, 12 months and 5-years post-stroke. No differences were found in the impact of stroke over time between groups. Despite increased impact of stroke (indicating more problems) over time in some areas, the groups perceived decreased impact of stroke (less problems) in their participation at 12 months. Perceived participation was sustained at the same level at 12 months as at 5 years in both groups. Findings stress the importance of access to follow-up rehabilitation interventions one-year post-stroke to enable participation in daily activities, and to support the use of self-management strategies to facilitate participation in valued and meaningful activities that might be difficult due to person’s functional limitations

ASSIST : a reablement program for older adults in Sweden – a feasibility study

Background Western countries emphasise the provision of assistive home care by implementing reablement services. Reablement services are offered to a limited degree in Sweden, and systematic research regarding outcomes and how reablement can be tailored to maximize benefits for older adults has been lacking. This study aimed to evaluate the feasibility of a novel reablement program (ASSIST 1.0) regarding study design and outcome measures, as well as fidelity, adherence, and acceptability of the program in a Swedish context. Method A non-randomised, quasi-experimental, mixed-method, pre/post-test design was applied with an intervention group receiving ASSIST 1.0 (n = 7) and a control group receiving regular home care (n = 10). ASSIST 1.0 was developed to empower older adults to increase their perceived performance and satisfaction of performing activities in everyday life as well as increase their perceived health, self-efficacy, and well-being. ASSIST 1.0 was founded on the concept of reablement and included three components: i) goal setting with The Canadian Occupational Performance Measure (COPM), ii) provided support to home care staff to enhance their provision of reablement, and iii) explored the incorporation and use of an information- and communication technology (ICT) to facilitate information transfer. Results Using COPM for goal setting with older adults and providing support to the staff via workshops were valuable components in the delivery of ASSIST 1.0. The ICT product encountered several challenges and could not be evaluated. COPM and EQ-5D were deemed the most important instruments. Organisational and political barriers affected the feasibility. Although, the fidelity and adherence were complied the staff perceived the program to be acceptable. Conclusion The ASSIST 1.0 program was feasible in regard of study design, delivering the intervention, and evaluating instruments that detected a change. A logical progression would be to conduct a full-scale trial. In addition, a usability study to evaluate the technological component is also recommended. With minor improvements, the ASSIST 1.0 program has the potential to contribute to the development of a home care organisation that could enhance older adults possibility to age in place at home

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

Information and communication technology in home-based rehabilitation – a discussion of possibilities and challenges

Background: Information and communication technology (ICT) has been proven to have effect in terms of providing alternative ways to deliver rehabilitation services. The intention with this paper is to serve as a foundation for discussions regarding the future development, design, and delivery of home-based rehabilitation, including ICT. Aim: To reflect on and discuss the possibilities and challenges of using ICT in home-based rehabilitation services. Method and material: We use experiences and results from various projects to reflect on and discuss possibilities and challenges related to the use of ICT in home-based rehabilitation. Findings and discussion: We exemplify how ICT present new possibilities that can increase the quality of the rehabilitation process and improve access to services. We reflect on some challenges in the use of ICT, related to non-user-friendly solutions, to the specific rehabilitation situation, and a lack of technical support. At an organisational level, readiness to use ICT can impact the extent to which new solutions are integrated into practice. Conclusion: We emphasise that ICT has the potential to develop and improve service delivery and contribute to increased quality and accessibility of home-based rehabilitation