Article

Significant others’ perspectives on person-centred information and communication technology in stroke rehabilitation – a grounded theory study

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Abstract

Aim: The aim of this study was to explore significant others’ perspectives on how information and communication technology can support the rehabilitation process after stroke and facilitate participation in everyday life. Method: Thirteen significant others were included in the study, and to capture their perspectives, two focus groups, and five individual interviews were carried out in Denmark and Sweden 6-12 months after the stroke incident. A grounded theory approach was used throughout the study and a constant comparative method was used in the analysis. Results: Five subcategories were identified from the analysis of the interviews: (1) Information and communication technology providing a sense of security, (2) Information and communication technology as a social mediator, (3) Information and communication technology as a compensator for deficits, (4) Information and communication technology as a way to reach information, and (5) Information and communication technology as a possibility to supplement the rehabilitation process. From these categories, one core category emerged: The potential of information and communication technology to facilitate participation in everyday life and thereby reduce the strains that significant others experience after stroke. Conclusion: Information and communication technology has the potential to facilitate participation in everyday life after stroke. It is important, therefore, to start using information and communication technology in the rehabilitation process after stroke, to bring meaning to everyday life and to support both the stroke survivors and their significant others. • IMPLICATIONS FOR REHABILITATION • Integration of information and communication technology in the rehabilitation process after stroke can accommodate several of the significant others´ needs. • Educating stroke survivors to use information and communication technology as part of the rehabilitation process offloads their significant others. • Integration of information and communication technology in the rehabilitation process after stroke can bring new meaning in everyday life and can facilitate both independence and participation in everyday life. https://www.tandfonline.com/doi/abs/10.1080/09638288.2018.1555614

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... Several studies have reported that ICT increases client participation and adherence to therapeutic activities, supports shared decision-making, and improves client's outcomes [24][25][26]. Most of the OTs participating in this survey reported a positive influence of ICT. ...
... Integrating ICT into the rehabilitation process can support clients' social participation [28,29] and contribute to improving their quality of life [30,31]. Healthcare professionals play a key role in providing appropriate ICT solutions to clients and caregivers [24,32]. Healthcare professionals are responsible for recommending appropriate ICT to clients and providing support in the method of using ICT and how to address issues that may arise when using ICT, such as updating [33,34]. ...
... However, the results of this survey revealed a gap between the performance role required for ICT use and the knowledge and usage practices of ICT by domestic OTs. Despite the changes in healthcare paradigms due to the development of ICT and the therapeutic use and positive effects of ICT reported in various studies [24,29,31], various aspects of ICT utilization in the current domestic practice of OTs are not clearly integrated. Although the potential of ICT as a therapeutic tool and the underlying evidence for its clinical application need to be actively addressed by clinicians, the current opportunities for continuing ICT education or ICT knowledge acquisition are insufficient. ...
Article
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The convergence and development of information and communication technology (ICT) have brought changes to occupational therapy practices, posing novel challenges for occupational therapists (OTs). This study aimed to investigate current practices of ICT use and factors affecting the clinical use of ICT among Korean OTs. An online survey was conducted among 158 domestic OTs working in hospitals. Participants reported that the therapeutic use of ICT positively affected client outcomes, ICT choice, and continued use. Participants highlighted the necessity to assess the ability of clients to use smart devices and ensure familiarity in the OT process. Of respondents, 31% reported the application of ICT-based interventions or recommendations in clinical practice. The use of ICT was predominantly associated with cognitive function, leisure activities, and information access and communication. A significant difference in barriers to ICT use was observed between familiar users and non-users. Familiar users reported a lack of knowledge and training as major barriers, whereas non-users reported expensive products or technology. Ease of use and usefulness were facilitators of ICT use among familiar users. Information and training opportunities are required to promote ICT use by OTs, and the usefulness of ICT must be realized via client-centered, customized approaches.
... Stroke is the third most common cause of death in the western part of the world, and there are about 15.000 new incidences every year in Denmark [1]. Due to improved medical care and an ageing population, the number of people living with the long-term consequences of stroke, including dependence and reduced participation in everyday life is likely to increase [2][3][4][5]. Rehabilitation is a team effort, where health professionals within and between sectors need to cooperate in order to facilitate a coherent rehabilitation process [6][7][8]. Rehabilitation is essential in order for stroke survivors to maintain, develop and reestablish earlier or new functionalities [8]. ...
... Furthermore, specialized rehabilitation programs including physiotherapy and occupational therapy have been shown to be effective in rehabilitation of declined functioning [13]. Due to increased numbers of stroke survivors, shorter hospital stays and more care and rehabilitation delivered in the municipalities [4,[14][15][16][17][18][19][20] new solutions to support both stroke survivors and significant others in the rehabilitation process are needed [21]. To meet the increasing demands and limit the growth of stroke rehabilitation costs, health services in which information and communication technology (ICT) are used alongside conventional therapy offer new opportunities [13]. ...
... ICT devices are also being increasingly used to support stroke rehabilitation and studies have shown that stroke survivors, their significant others, and health professionals are interested in integrating ICT into stroke rehabilitation [13,[21][22][23][24], given that ICT has the potential to accommodate many unmet needs expressed by stroke survivors and significant others. Among the unmet needs, dissatisfaction with the information level during the inpatient stay [22,25], and a lack of adaptation to changing information needs over time [4,25] have been reported. Studies suggest that ICT has the potential to improve the level and timing of information to patients and their significant others [13], and that individualized information can lead to better quality of life in both stroke survivors and significant others [25,26]. ...
Article
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Aim The aim of this study was to explore the current and potential use of information and communication technology (ICT) to enhance coherent person-centred rehabilitation after stroke, from the perspectives of physiotherapists and occupational therapists. Method Five occupational therapists and four physiotherapists from different phases of the Danish stroke rehabilitation process were included and two focus group interviews were carried out. A grounded theory approach was used throughout the study and a constant comparative method was used in the analysis. Results Three subcategories were identified from the analysis of interviews with participants: 1) ICT and apps as meaningful and supportive in the rehabilitation process, 2) ICT as a tool in communication and documentation and 3) Barriers to the integration of ICT and apps in the rehabilitation process. From these categories one core category emerged: The potential of a personalized app solution to facilitate coherent person-centred rehabilitation. Conclusion ICT was perceived as important to integrate in stroke rehabilitation both for assessment, training and to compensate for remaining deficits. The development of a personalized app solution could accommodate stroke survivors’ and significant others’ need for insight into and overview over the rehabilitation process as well as access to relevant information, which would thereby empower them. Furthermore, a personalized app solution could also facilitate follow-up after discharge and was perceived to ease the communication and documentation within and between sectors, as well as communication with both stroke survivors and significant others.
... However, patients unable to use technologies due to motor or cognitive deficits are often excluded from studies (67) as shown in our scoping review. Given that 25% of stroke survivors are at risk of a new stroke or in life-long need of support (81), technologies supporting activity and participation should be taken into account (6,7,82). Stroke survivors who are cognitively challenged may require more training (69) and/or assistance from a significant other (54) to use the app independently. ...
... Only three studies included in this scoping review aimed to support several components of the rehabilitation process (not only information regarding how to manage stroke-related deficits (video/text/pictures), but also discharge support, in addition to providing exercise programmes (videos and text) (76) and goal-setting (49). Stroke survivors, their significant others, and health professionals, have expressed a need for more timely information, a more coordinated cross-sectional transition from inpatient to outpatient rehabilitation, a better overview of the entire rehabilitation process, and improved follow-up and contact with health professionals after discharge (6,7,42,82). An app solution aimed at supporting people with chronic diseases and accommodating patients' needs for a more comprehensive solution and a greater overview of the rehabilitation process has been tested in patients newly diagnosed with osteoporosis in Denmark (83). ...
Article
Aim: The aim of this study was to describe, and review evidence of mobile and web-based applications being used to support the rehabilitation process after stroke. The secondary aim was to describe participants' stroke severity, and use of applications in relation to, respectively, the setting and phase of the rehabilitation process. Method: A scoping review methodology was used to identify studies, through databases as PubMed, Cinahl, Embase and AMED. Additionally, grey literature was searched. The studies were categorized using the model of rehabilitation by Derick Wade. Results: The literature search resulted in 10,142 records. Thirty-six studies were included in which applications were used to support: assessment (n=13); training (n=20); discharge from hospital (n=2); and both training and discharge from hospital (n=1). Of the 36 studies, 25 studies included participants with mild to moderate stroke, and four studies included participants with severe stroke. In seven studies the stroke severity was not reported. Eighteen studies included participants with chronic stroke, 12 acute-subacute stroke, and three included participants with acute and/or subacute and/or chronic stroke. In three studies, stroke onset was not reported. Applications were used in a rehabilitation setting (n=16), home setting (n=13), both settings (n=3). In four studies the setting were not reported. Conclusion: Most included studies of applications developed to support the rehabilitation process after stroke have been explorative. They included primarily participants with mild or moderate stroke and focused on a limited aspect of the rehabilitation process, e.g., assessment or training. Future applications to support stroke rehabilitation should accommodate stroke survivors' and caregivers' need for solutions, irrespective of stroke severity and throughout the entire rehabilitation process.
... The keyword "participation" included the views of the implementor, participants, and their relatives on telerehabilitation, and the development of an ICTbased rehabilitation to support a person-centered rehabilitation process for survivors and their significant others. It establishes a sense of connection between the medical staff and the patient and reduces the patient's feeling of abandonment when rehabilitation ends (39). A study from Denmark examined the perspectives of physiotherapists and occupational therapists on ICT. ...
Article
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PurposeTelerehabilitation, as an effective means of treatment, is not inferior to traditional rehabilitation, and solves the problem of many patients who do not have access to hospital-based training due to costs and distance. So far, the knowledge structure of the global use of telerehabilitation has not been formed. This study aimed to demonstrate the state of emerging trends and frontiers concerning the studies of telerehabilitation through bibliometric software.Methods Literature about telerehabilitation from 2000 to 2021 was retrieved from the Web of Science Core Collection. We used CiteSpace 5.8.R3 to analyze the publication years, journals/cited journals, countries, institutions, authors/cited authors, references, and keywords. Based on the analysis results, we plotted the co-citation map to more intuitively observe the research hotspots and knowledge structure.ResultsA total of 1,986 records were obtained. The number of annual publications gradually increased over the investigated period. The largest increase occurred between 2019 and 2020. J TELEMED TELECARE was the most prolific and the most cited journal. The United States was the most influential country, with the highest number of publications and centrality. The University of Queensland was the most productive institution. The author Tousignant M ranked the highest in the number of publications and Russell TG ranked the first in the cited authors. Respectively, the articles published by Cottrell MA and Russell TG ranked the first in the frequency and centrality of cited references. The four hot topics in telerehabilitation were “care”,“stroke”, “telemedicine” and “exercise”. The keyword “stroke” showed the strongest citation burst. The two frontier keywords were “physical therapy” and “participation”. The keywords were clustered to form 21 labels.Conclusion This study uses visualization software CiteSpace to provide the current status and trends in clinical research of telerehabilitation over the past 20 years, which may help researchers identify new perspectives concerning potential collaborators and cooperative institutions, hot topics, and research frontiers in the research field. Bibliometric analysis of telerehabilitation supplements and improves the knowledge field of telemedicine from the concept of rehabilitation medicine and provides new insights into therapists during the COVID-19 pandemic.
... The primary studies in this group examined the stakeholders' perspective, perception, and experience using TeleRehab services. 62 assessed the perspectives of patients' partners on how IT could assist the process of rehabilitation and promote patient cooperation in daily life. Damhus et al 78 stated that the health care professionals who participated in their study asserted that TeleRehab complements the traditional rehabilitation services. ...
Article
Objective To examine the adoption of Telerehabilitation services from the stakeholders’ perspective and to investigate the recent advances and future challenges. Data Sources A systematic review of English articles published by PubMed, Thomson ISI’s Web of Science (WoS), and Elsevier’s Scopus between 1998 and 2020. Study Selection The first author screened all titles and abstracts based on the eligibility criteria. Experimental/empirical articles such as randomised/non-randomised control trials, pre-experimental studies, case studies, surveys, feasibility studies, qualitative descriptive studies, and cohort studies were all included in this review. Data Extraction The first, the second, and the fourth authors independently extracted data using the predefined data fields by the third author. The data extracted through this review were the study objective, study design, purpose of TeleRehab, TeleRehab equipment, Subject/Sample, age, disease, data collection methods, theory/framework, and adoption themes. Data Synthesis A TeleRehab adoption process model was proposed to highlight the significance of the readiness stage and also to classify the primary studies. The articles were classified based on six adoption themes, namely users’ perception, perspective, and experience, users’ satisfaction, users’ acceptance and adherence, TeleRehab usability, individual readiness, and users’ motivation and awareness. Results 133 out of 914 articles met the eligibility criteria. The majority of papers have used the randomised controlled trial (27%), followed by the survey (15%) in terms of study design. Almost 49% of the papers have examined the use of Telerehabilitation technology on patients with nervous system problems, 23% deliberated physical disability disorders, 10% examined cardiovascular diseases, and 8% inspected pulmonary diseases. Conclusion The research on Telerehabilitation adoption is still in its infancy and needs further attention from the researchers working in the healthcare field, especially in developing countries. Indeed, studies into Telerehabilitation adoption are essential to minimise the implementation failure as these sorts of studies will help to inform healthcare personnel and clients about successful adoption strategies.
... It has been shown that the use of mainstream technologies (e.g., smartphones, computers) can provide a sense of independence and safety to stroke survivors [19,36,41,64], even though accessibility barriers exist (e.g., handling, finding functions) [14,27]. Still, research on Assistive Technologies (ATs) 1 has been largely limited to rehabilitation, and little is known about the opportunities of mainstream technologies to improve QoL of stroke survivors. ...
Conference Paper
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There are over 80 million stroke survivors globally, making it the main cause of long-term disability worldwide. Not only do the challenges associated with stroke affect the quality of life (QoL) of survivors, but also of their families. To explore these challenges and define design opportunities for technologies to improve the QoL of both stakeholders, we conducted semi-structured interviews with 10 survivors and one of their family members. We uncovered three major inter-linked themes: strategies to cope with technological barriers, the (in)adequacy of assistive technologies, and limitations of the rehabilitation process. Findings highlight multiple design opportunities, including the need for meaningful patient-centered tools and methods to improve rehabilitation effectiveness , emotion-aware computing for family emotional support, and rethinking the nature of assistive technologies to consider the perception of transitory stroke-related disabilities. We thus argue for a new class of dual-purpose technologies that fit survivors' abilities while promoting the regain of function.
Preprint
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Background Tele-rehabilitation is part of Tele-health (TH) which provides a rehabilitation service at a distance through telecommunication technology. Lack of enough trained professionals, lack of access, transportation cost, long waiting time, and difficulty of mobility to reach rehabilitation services are problems faced during face-to-face rehabilitation services. The significance of this study is to assess the attitudes and associated factors of health professionals about TR services. Method An institutional-based cross-sectional quantitative study design was conducted among 408 participants from March to April 2021. Study units were selected by using a simple random sampling technique. Epi-data 3.1 versions were used to enter data, while SPSS version 20 was used to conduct analysis. A bivariable and multivariable logistic regression was used to determine factors associated with the attitude of health professionals towards tele-rehabilitation. Result A total of 408 participants responded to the 423 survey questionnaires distributed. A response rate of 96.45 % was achieved for this study. Out of the 408 respondent’s majority, 285(69.9%) of health professionals had good attitude towards tele rehabilitation-based treatment services. Among the factors good knowledge of tele rehabilitation AOR 1.76(95%CI: 1.078, 2.879), digitally literate AOR 1.74 (95%CI: 1.028, 2.954), perception on security and privacy AOR 0.56(95%CI: 0.333, 0.944), and owns smart mobile phone AOR 1.9 (95%CI: 1.007, 3.781) were significantly associated with attitude of tele rehabilitation. Conclusion The majority of the respondents had a good attitude towards tele rehabilitation services. Having own mobile, knowledge towards tele rehabilitation, digital literacy, perception on security and privacy to rehabilitation was found to be the most important determinant factor for the attitude of health professionals towards tele rehabilitation. As a result, the government and other responsible entities should consider enacting systems and strategies to encourage the use of mobile technologies for the management of disability and chronic diseases.
Article
Background: Continuity of rehabilitation care after completion of a hospital-based rehabilitation program remains a challenge. This is of considerable significance in Saudi Arabia where there is a lack of community-based rehabilitation, which renders the need of telemedicine services. There is lack of data regarding understanding, awareness, and attitudes of rehabilitation professional toward telerehabilitation. This study was aimed to explore Saudi-based rehabilitation professionals' knowledge of telerehabilitation. Materials and Methods: After pilot testing, a survey questionnaire was distributed to 82 rehabilitation professionals working in different regions of Saudi Arabia. The survey included 14 close-ended questions targeting five domains: demographics, telemedicine knowledge, telerehabilitation service knowledge, social acceptance of these services, and risks associated with these services. Descriptive statistics were obtained by analyzing data using Microsoft Excel. Results: In total 46% of the participants were aware of telerehabilitation service technology but did not use it. 69.51% considered both telerehabilitation and community-based rehabilitation as the best service delivery methods. About 43% of participants reported that lack of knowledge about information technology and cost were the main factors that led to their limited use of telerehabilitation systems. The majority of the participants (52.44%) considered breach of confidentiality to be a risk associated with telerehabilitation services. Conclusions: Even though considerable number of the participants considered telerehabilitation as an important service delivery method, most of them are not involved in telerehabilitation. This renders the need of establishing local telerehabilitation guidelines and addressing the barriers pertaining to training, resources, cost, policy making, confidentiality, and perception of patients.
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Background and purpose: This proof-of-concept trial investigated the effects of an 8-week program of caregiver-mediated exercises commenced in hospital combined with tele-rehabilitation services on patient self-reported mobility and caregiver burden. Methods: Sixty-three hospitalized stroke patients (mean age 68.7, 64% female) were randomly allocated to an 8-week caregiver-mediated exercises program with e-health support or usual care. Primary outcome was the Stroke Impact Scale mobility domain. Secondary outcomes included length of stay, other Stroke Impact Scale domains, readmissions, motor impairment, strength, walking ability, balance, mobility, (extended) activities of daily living, psychosocial functioning, self-efficacy, quality of life, and fatigue. Additionally, caregiver's self-reported fatigue, symptoms of anxiety, self-efficacy, and strain were assessed. Assessments were completed at baseline and at 8 and 12 weeks. Results: Intention-to-treat analysis showed no between-group difference in Stroke Impact Scale mobility (P=0.6); however, carers reported less fatigue (4.6, confidence interval [CI] 95% 0.3-8.8; P=0.04) and higher self-efficacy (-3.3, CI 95% -5.7 to -0.9; P=0.01) at week 12. Per-protocol analysis, examining those who were discharged home with tele-rehabilitation demonstrated a trend toward improved mobility (-9.8, CI 95% -20.1 to 0.4; P=0.06), significantly improved extended activities of daily living scores at week 8 (-3.6, CI 95% -6.3 to -0.8; P=0.01) and week 12 (3.0, CI 95% -5.8 to -0.3; P=0.03), a 9-day shorter length of stay (P=0.046), and fewer readmissions over 12 months (P<0.05). Conclusions: Caregiver-mediated exercises supported by tele-rehabilitation show promise to augment intensity of practice, resulting in improved patient-extended activities of daily living, reduced length of stay with fewer readmissions post stroke, and reduced levels of caregiver fatigue with increased feelings of self-efficacy. The current findings justify a larger definite phase III randomized controlled trial. Clinical trial registration: URL: http://www.anzctr.org.au. Unique identifier: ACTRN12613000779774.
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Background Despite the potential of eHealth services to revolutionize the way healthcare and prevention is provided many applications developed for patients fail to deliver their promise. Therefore, the aim of this study is to use patient journey mapping to explore post-discharge stroke patients’ information needs to propose eHealth services that meet their needs throughout their care and rehabilitation processes. Methods Three focus groups with younger (<65 years) and older (> = 65 years) stroke patients were performed. Content analysis was used to analyse the data. Stroke patients’ information needs was explored using patient journey model. Results Four main events (discharge from hospital, discharge from rehab clinic, coming home, and clinical encounters) and two phases (at rehab clinic, at home) have been identified in patients’ post-discharge journey. The main categories identified in this study indicate that patients not only need to have access to health related information about their care and rehabilitation processes but also practical guidance through healthcare and community services. Patients also have different information needs at different events and during different phases. Potential supportive eHealth services were suggested by the researchers considering different parts of the patients’ journeys. Conclusions Patient journey models and qualitative analysis of patients’ information needs are powerful tools that can be used to improve healthcare from a patient perspective. As patients’ understanding of their illness changes over time, their need of more flexible support throughout the care and rehabilitation processes increases. To design appropriate eHealth services that meet patients’ information needs, it is imperative to understand the current care and rehabilitation processes and identify patients’ information needs throughout their journey.
Article
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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.
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Large numbers of people provide carer roles for survivors of stroke. Person-centred stroke rehabilitation must consider the perspectives of carers, as stroke affects not only the stroke survivor but also the quality of life and health of the carers. There is little collective knowledge about stroke carers' experiences, needs and preferences during the inpatient stroke rehabilitation process to then inform person-centred service improvements. Our objective is to report and synthesise experiences, needs and preferences of the carers of stroke survivors undergoing rehabilitation in inpatient settings. We will conduct a systematic review of qualitative studies using a thematic synthesis methodology. We will follow the Enhancing Transparency in Reporting the Synthesis of Qualitative Research Guidelines (ENTREQ) and search the following databases for relevant articles: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Embase, and Web of Science. No language or publication date constraints will be applied. Eligible studies will have to use qualitative methods of data collection and analysis and reported data from the carers of stroke survivors who underwent inpatient stroke rehabilitation. Studies will be eligible for inclusion if they report the experiences, needs and preferences of carers regarding inpatient rehabilitation environments, organisation, care systems, therapeutic interventions, information exchange, carer training, discharge and community service planning and other issues of relevance to their roles as carers. Study selection and assessment of quality will be performed independently by two reviewers. Any disagreement will be resolved by a third reviewer. Data will be extracted by one reviewer, tabled, and checked for accuracy by another reviewer. All text reported in studies' results, discussion and conclusion sections will be entered into the NVivo software for analysis. Extracted texts will be inductively coded independently by two reviewers and analysed in three phases using thematic synthesis. Descriptive and analytical themes will be developed. This study is expected to provide new insights into the perspectives of stroke survivors' carers. Increased knowledge about carer perspectives and preferences will inform person-centred improvements in stroke rehabilitation. PROSPERO registration number: CRD42015017315 .
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This study explores stroke survivors' and relatives' negotiation of relational and activity change in their interrelated long-term meaning-making processes of everyday life and what it means for the experience of progress and well-being. Repeated retrospective in-depth interviews were conducted with both the stroke survivor and relatives. A Critical Psychological Perspective gives the frame of reference to study more closely what is going on in and across particular contexts in family members' ongoing social practices. An asymmetric problematic relationship can develop among the participants in the context of family life. However, the analysis identifies six beneficial relational and activity changes, which contribute to a reciprocal, balanced repositioning, and help the family move in a more positive direction. The repositioning processes facilitate a new transformation of family we-ness, which is important for the participants' experience of process and well-being. The comprehensive family work that has to be done is about managing the imbalance of everyday life, upholding separate activities outside the family sphere and dealing with the fact that peripheral others become more peripheral. The study addresses some arguments for taking a family-centred perspective in occupational therapy practice, as well as in a stroke rehabilitation service in general.
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Introduction Stroke rehabilitation is a process targeted towards restoration or maintenance of the physical, mental, intellectual and social abilities of an individual affected by stroke. Unlike high-income countries, the resources for stroke rehabilitation are very limited in many low-income and middle-income countries (LMICs). Provision of cost-effective, post-stroke multidisciplinary rehabilitation services for the stroke survivors therefore becomes crucial to address the unmet needs and growing magnitude of disability experienced by the stroke survivors in LMICs. In order to meet the growing need for post-stroke rehabilitation services in India, we developed a web-based Smartphone-enabled educational intervention for management of physical disabilities following a stroke. Methods On the basis of the findings from the rehabilitation needs assessment study, guidance from the expert group and available evidence from systematic reviews, the framework of the intervention content was designed. Web-based application designing and development by Professional application developers were subsequently undertaken. Results The application is called ‘Care for Stroke’. It is a web-based educational intervention for management of physical disabilities following a stroke. This intervention is developed for use by the Stroke survivors who have any kind of rehabilitation needs to independently participate in his/her family and social roles. Discussion ‘Care for stroke’ is an innovative intervention which could be tested not just for its feasibility and acceptability but also for its clinical and cost-effectiveness through rigorously designed, randomised clinical trials. It is very important to test this intervention in LMICs where the rehabilitation and information needs of the stroke survivors seem to be substantial and largely unmet.
Article
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Introduction Stroke rehabilitation is a process targeted towards restoration or maintenance of the physical, mental, intellectual and social abilities of an individual affected by stroke. Unlike high-income countries, the resources for stroke rehabilitation are very limited in many low-income and middle-income countries (LMICs). Provision of cost-effective, post-stroke multidisciplinary rehabilitation services for the stroke survivors therefore becomes crucial to address the unmet needs and growing magnitude of disability experienced by the stroke survivors in LMICs. In order to meet the growing need for post-stroke rehabilitation services in India, we developed a web-based Smartphone-enabled educational intervention for management of physical disabilities following a stroke. Methods On the basis of the findings from the rehabilitation needs assessment study, guidance from the expert group and available evidence from systematic reviews, the framework of the intervention content was designed. Web-based application designing and development by Professional application developers were subsequently undertaken. Results The application is called ‘Care for Stroke’. It is a web-based educational intervention for management of physical disabilities following a stroke. This intervention is developed for use by the Stroke survivors who have any kind of rehabilitation needs to independently participate in his/her family and social roles. Discussion ‘Care for stroke’ is an innovative intervention which could be tested not just for its feasibility and acceptability but also for its clinical and cost-effectiveness through rigorously designed, randomised clinical trials. It is very important to test this intervention in LMICs where the rehabilitation and information needs of the stroke survivors seem to be substantial and largely unmet.
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To explore and describe persons with stroke and their caregivers' restrictions in participation in everyday occupations, i.e. occupational gaps, 3-6 months post-stroke, in relation to life satisfaction, combined life satisfaction, care-giver burden, perceived impact of stroke, and activities of daily living. Cross-sectional study. Persons with stroke and their caregivers (105 dyads). The Occupational Gaps Questionnaire, Life Satisfaction Checklist, Caregiver Burden Scale, Stroke Impact Scale and Barthel Index were used. Correlations were analysed with Spearman's rank, and regression analyses used life satisfaction as the dependent variable. At least one person in 86% of the dyads perceived restrictions in participation, with the most common gap in travelling for pleasure. Correlations were low between the numbers of occupational gaps and life satisfaction (R = -0.33, R = -0.31); however, life satisfaction accounted for occupational gaps both for persons with stroke and for caregivers. A greater number of occupational gaps were perceived in the dyads with combined low levels of life satisfaction compared with those with combined high levels of life satisfaction. Participation in everyday occupations is related to life satisfaction even for caregivers of persons with stroke. The results of this study add to our knowledge about the stroke-caregiver dyad and will help to inform family-centred approaches within stroke rehabilitation.
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The aim of the study was to explore the associations between the dyad's (person with stroke and informal caregiver) perception of the person with stroke's rehabilitation needs and stroke severity, personal factors (gender, age, sense of coherence), the use of rehabilitation services, amount of informal care and caregiver burden. Further, the aim was to explore the personal experience of everyday life changes among persons with stroke and their caregivers and their strategies for handling these 1 year after stroke. A mixed methods design was used combining quantitative and qualitative data and analyses. Data were mainly collected in the participants' homes. Data were collected through established instruments and open-ended interviews. The dyad's perceptions of the person with stroke's rehabilitation needs were assessed by the persons with stroke and their informal caregivers using a questionnaire based on Ware's taxonomy. The results were combined and classified into three groups: met, discordant (ie, not in agreement) and unmet rehabilitation needs. To assess sense of coherence (SOC) in persons with stroke, the SOC-scale was used. Caregiver burden was assessed using the Caregiver Burden Scale. Data on the use of rehabilitation services were obtained from the computerised register at the Stockholm County Council. 86 persons with stroke (mean age 73 years, 38% women) and their caregivers (mean age 65 years, 40% women). Fifty-two per cent of the dyads perceived that the person with stroke's need for rehabilitation was met 12 months after stroke. Met rehabilitation needs were associated with less severe stroke, more coping strategies for solving problems in everyday activities and less caregiver burden. Rehabilitation interventions need to focus on supporting the dyads' process of psychological and social adaptation after stroke. Future studies need to explore and evaluate the effects of using a dyadic perspective throughout rehabilitation. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
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Stroke survivors live with varied degrees of disabilities and cares are provided largely by the informal caregivers. This study investigated informal caregivers' burden and strains of caring for stroke patients. This study involved 157 (81 males and 76 females) informal caregivers of stroke survivors receiving care in all secondary and tertiary health institutions with physiotherapy services in Lagos State, Nigeria. Information was collected through self-administered questionnaire during clinic-hours. Data was analyzed using Spearman's Rank Correlation Coefficient. The patients' age ranged between 20 and 79 (mean=59.6±14.6years). Sixty-one had haemorrhagic stroke while 96 had ischaemic stroke. The informal caregivers' age was 39.2±12.8years (range: 17-36years). More (60.8%) participants reported moderate objective while 79.2% had mild subjective burdens. The following factors significantly increased (P<0.05) the level of burden and strains experienced by the informal caregivers: closer intimacy with the stroke survivors, fewer number of caregivers for the stroke patient, longer duration since the onset of stroke and more hours of caregiving per day. Caregiving had negative significant influence (P<0.05) on the social, emotional, health and financial well-beings of the informal caregivers. Caring for stroke survivors put social, emotional, health and financial burdens and strains on the informal caregivers. These burdens and strains increase with duration of stroke, intimacy, smaller number of caregivers and length of daily caregiving. Therefore, informal caregivers should be involved in the rehabilitation plan for stroke patients and their well-being should also be given adequate attention. Copyright © 2015 Elsevier Masson SAS. All rights reserved.
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The objective of the study was to draw on the insights of people with stroke to assist in the development of a telerehabilitation program, using easily accessible technology to deliver an intervention. A qualitative study was conducted with four focus groups of people who were at least 12 months post-stroke and who had completed their rehabilitation. All focus groups were conducted in community facilities and used a semi-structured approach. Fifteen people took part in the focus groups. Three main themes emerged from the data in response to questions about use of technology and important aspects of physiotherapy. The first theme expressed the participants’ perspective that the technology really helped with “keeping connected”. The second theme indicated “what we need from therapists” in order to gain the most from therapy; and the third theme highlighted aspects of a physiotherapy program they considered important, “what we would like from therapy”. The themes helped us gain insight into how participants viewed the use of technology to augment rehabilitation and also what they needed from therapists to make the gains they viewed as important. These themes informed the development of a telerehabilitation program using readily accessible technology.
Article
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Objective: To qualitatively explore daughters' experiences with and response to holding multiple roles while providing post-stroke care to a parent. Design: Qualitative study using a descriptive approach. Semi-structured interviewing was used. Interviews were recorded, transcribed and analyzed to develop themes. Setting: General community of a metropolitan city. Participants: Twenty-three adult daughters caring for a community-dwelling parent who had suffered a stroke. Interventions: Not applicable. Main outcome measures: Not applicable. Results: Role overload is a salient issue for daughter caregivers. This overload is best captured by the analogy of "juggling" multiple role demands and responsibilities. Two key themes suggest that role overload resulting from parent care affects daughters': 1) valued relationships (e.g. challenges develop in their relationship with children and partner); and 2) ability to participate in valued activities (e.g. reduced involvement in leisure activities and restricted employment). Conclusions: Future support efforts should help daughters manage the caregiving role in light of other responsibilities. This can mitigate overload-related strain in valued relationships and decreased participation in valued activities, thereby contributing to better health and well-being for daughter caregivers.
Article
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Objective The aim was to study a client-centred activities of daily living (ADL) intervention (CADL) compared with the usual ADL intervention (UADL) in people with stroke regarding: independence in ADL, perceived participation, life satisfaction, use of home-help service, and satisfaction with training and, in their significant others, regarding: caregiver burden, life satisfaction, and informal care. Methods In this multicentre study, 16 rehabilitation units were randomly assigned to deliver CADL or UADL. The occupational therapists who provided the CADL were specifically trained. Eligible for inclusion were people with stroke treated in a stroke unit ≤3 months after stroke, dependent in ≥two ADL, not diagnosed with dementia, and able to understand instructions. Data were collected at inclusion and three months thereafter. To detect a significant difference between the groups in the Stroke Impact Scale (SIS) domain “participation”, 280 participants were required. Intention-to-treat analysis was applied. Results At three months, there was no difference in the outcomes between the CADL group (n = 129) and the UADL group (n = 151), or their significant others (n = 87/n = 93) except in the SIS domain “emotion” in favour of CADL (p = 0.04). Conclusion The CADL does not appear to bring about short-term differences in outcomes and longer follow-ups are required.
Article
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Background: Telerehabilitation is an alternative way of delivering rehabilitation services. Information and communication technologies are used to facilitate communication between the healthcare professional and the patient in a remote location. The use of telerehabilitation is becoming more viable as the speed and sophistication of communication technologies improve. However, it is currently unclear how effective this model of delivery is relative to rehabilitation delivered face-to-face. Objectives: To determine whether the use of telerehabilitation leads to improved ability to perform activities of daily living amongst stroke survivors when compared with (1) in-person rehabilitation (when the clinician and the patient are at the same physical location and rehabilitation is provided face-to-face); or (2) no rehabilitation. Secondary objectives were to determine whether use of telerehabilitation leads to greater independence in self care and domestic life and improved mobility, health-related quality of life, upper limb function, cognitive function or functional communication when compared with in-person rehabilitation and no rehabilitation. Additionally, we aimed to report on the presence of adverse events, cost-effectiveness, feasibility and levels of user satisfaction associated with telerehabilitation interventions. Search methods: We searched the Cochrane Stroke Group Trials Register (November 2012), the Cochrane Effective Practice and Organization of Care Group Trials Register (November 2012), the Cochrane Central Register of Controlled Trials (The Cochrane Library, Issue 11, 2012), MEDLINE (1950 to November 2012), EMBASE (1980 to November 2012) and eight additional databases. We searched trial registries, conference proceedings and reference lists. Selection criteria: Randomised controlled trials (RCTs) of telerehabilitation in stroke. We included studies that compared telerehabilitation with in-person rehabilitation or no rehabilitation. In addition, we synthesised and described the results of RCTs that compared two different methods of delivering telerehabilitation services without an alternative group. We included rehabilitation programmes that used a combination of telerehabilitation and in-person rehabilitation provided that the greater proportion of intervention was provided via telerehabilitation. Data collection and analysis: Two review authors independently identified trials on the basis of prespecified inclusion criteria, extracted data and assessed risk of bias. A third review author moderated any disagreements. The review authors contacted investigators to ask for missing information. Main results: We included in the review 10 trials involving a total of 933 participants. The studies were generally small, and reporting quality was often inadequate, particularly in relation to blinding of outcome assessors and concealment of allocation. Selective outcome reporting was apparent in several studies. Study interventions and comparisons varied, meaning that in most cases, it was inappropriate to pool studies. Intervention approaches included upper limb training, lower limb and mobility retraining, case management and caregiver support. Most studies were conducted with people in the chronic phase following stroke. Primary outcome: no statistically significant results for independence in activities of daily living (based on two studies with 661 participants) were noted when a case management intervention was evaluated. Secondary outcomes: no statistically significant results for upper limb function (based on two studies with 46 participants) were observed when a computer programme was used to remotely retrain upper limb function. Evidence was insufficient to draw conclusions on the effects of the intervention on mobility, health-related quality of life or participant satisfaction with the intervention. No studies evaluated the cost-effectiveness of telerehabilitation. No studies reported on the occurrence of adverse events within the studies. Authors' conclusions: We found insufficient evidence to reach conclusions about the effectiveness of telerehabilitation after stroke. Moreover, we were unable to find any randomised trials that included an evaluation of cost-effectiveness. Which intervention approaches are most appropriately adapted to a telerehabilitation approach remain unclear, as does the best way to utilise this approach.
Article
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Purpose: To develop and evaluate an information and communication technology (ICT) solution for a post-stroke Personalised Self-Managed Rehabilitation System (PSMrS). The PSMrS translates current models of stroke rehabilitation and theories underpinning self-management and self-efficacy into an ICT-based system for home-based post-stroke rehabilitation. Methods: The interdisciplinary research team applied a hybrid of health and social sciences research methods and user-centred design methods. This included a series of home visits, focus groups, in-depth interviews, cultural probes and technology biographies. Results: The iterative development of both the content of the PSMrS and the interactive interfaces between the system and the user incorporates current models of post-stroke rehabilitation and addresses the factors that promote self-managed behaviour and self-efficacy such as mastery, verbal persuasion and physiological feedback. Conclusion: The methodological approach has ensured that the interactive technology has been driven by the needs of the stroke survivors and their carers in the context of their journey to both recovery and adaptation. Underpinned by theories of motor relearning, neuroplasticity, self-management and behaviour change, the PSMrS developed in this study has resulted in a personalised system for self-managed rehabilitation, which has the potential to change motor behaviour and promote the achievement of life goals for stroke survivors.
Article
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Purpose: The aim was to better understand how information and communication technology (ICT) can provide support to elderly family caregivers caring for significant others suffering from dementia or stroke. Method: Ten households equipped with an ICT system, with a family caregiver and a spouse diagnosed with dementia or stroke, were followed and observed in a two-year case study. The family caregivers had regular meetings in groups organised by the municipal care of the elderly. Data from observations, semi-structured interviews, user data from the ICT system and data about the support provided by the municipality has been used to validate the findings. Results: The family caregivers socialised with users in the group as long as the users were stayed in the group. Meetings in the group were an important opportunity for exchanging experiences and to easing one"s mind. The ICT system did not reduce the municipality"s level of services to the participating families. The information built into the system has to be constantly updated to be of interest. Conclusions: An ICT support must be provided in a context of personal meetings and with a formal caregiver backing. This will empower informal or family caregivers. Such support must give the user the possibility to communicate and get access to the Internet. Implications for rehabilitation: Benefits were obtained when informal caregivers met with a group of people with whom they share the same kind of experiences and were supported by a formal caregiver. Informal caregivers need more attention and recognition. ICT systems can help but must be current and maintain the users interest.
Article
Full-text available
Stroke is the leading cause of long-term disability for adults in industrialized societies. Rehabilitation's efforts are tended to avoid long-term impairments, but, actually, the rehabilitative outcomes are still poor. Novel tools based on new technologies have been developed to improve the motor recovery. In this paper, we have taken into account seven promising technologies that can improve rehabilitation of patients with stroke in the early future: (1) robotic devices for lower and upper limb recovery, (2) brain computer interfaces, (3) noninvasive brain stimulators, (4) neuroprostheses, (5) wearable devices for quantitative human movement analysis, (6) virtual reality, and (7) tablet-pc used for neurorehabilitation.
Article
Purpose: To describe the experiences of everyday life over 6 years after stroke, from the perspectives of partners to persons after stroke. Materials and methods: Semi structured individual interviews were conducted with seven partners to persons who had had stroke. The interviews were recorded and then transcribed verbatim. The participants comprised two men and five women aged 60–82 years. The data were collected and analysed using a grounded theory approach. Results: One core category Living in strained everyday circumstances and three categories Feelings of anxiety, Living a demanding day to day life, and Adjusting to a changed role emerged from the analysis. The participants had developed strategies and new ways to boost their energy level in order to find the strength needed for their everyday life. Conclusion: This study shows that the everyday lives of partners to people who have had a stroke are characterised by feelings of strain and anxiety and that they need possibilities for different kinds of long-term support. Our findings may contribute to increased knowledge among health workers and increased readiness to offer support or referral to other meeting places such as peer support groups. • Implications for rehabilitation • The everyday lives of partners to people who have had a stroke are characterised by feelings of strain and anxiety. • Partners to people who have had a stroke need possibilities for different kinds of long-term support. • Possibilities for relief among partners to persons after stroke may be organised for example within the municipality or by patient organisations and other voluntary networks such as peer support groups.
Article
Materials and methods: Participants were included in this survey study if they had a stroke, lived in the community, were 19 years of age or older, and able to understand English. Participants completed a study-specific telerehabilitation survey via phone call, mail, in-person, or online. Descriptive statistics were used to characterize the sample and survey responses. Results: One hundred two survey responses were returned, representing a 79.1% response rate. The mean age of this urban (67.3%) and rural (32.7%) sample was 67.6 years. The technologies most commonly owned were as follows: televisions (91%), landline telephones (88.0%), and computers (79.0%). A large proportion of the sample reported an interest to receive assessments (58.4%), training and exercise programs (64.0%), and education (61.4%) via telerehabilitation, however, many were not interested to receive telerehabilitation (∼39%) and believed that the quality of care would be less than in-person rehabilitation (71.0%). Conclusions: The use of consumer technologies for the delivery of rehabilitation services is both feasible and desirable by stroke survivors. Telerehabilitation services at present should augment and not replace in-person rehabilitation. However, in cases where in-person rehabilitation is neither accessible nor possible, telerehabilitation could serve as an acceptable alternative and is a key area for future research.
Article
Purpose: The purpose of this study was to identify how people 6-12 months after stroke were using and integrating information and communication technology (ICT) in their everyday lives. Method: To capture the participants' experiences, one focus group and 14 individual interviews were carried out in Sweden and Denmark regarding the use of ICT in everyday life. The participants comprised 11 men and seven women aged 41-79 years. A grounded theory approach was used throughout the study and a constant comparative method was used in the analysis. Results: Five categories were identified from the analysis of the interviews with the participants: 1) Using the mobile phone to feel safe, 2) Staying connected with others, 3) Recreating everyday life, 4) A tool for managing everyday life, and 5) Overcoming obstacles for using ICT. From these categories one core category emerged: The drive to integrate ICT in everyday life after stroke. Conclusions: People with stroke had a strong drive to integrate ICT in order to manage and bring meaning to their everyday lives, although sometimes they needed support and adaptations. It is not only possible but also necessary to start using ICT in rehabilitation in order to support people's recovery and promote participation in everyday life after stroke. Implications for rehabilitation People with stroke have a strong drive for using information and communication technology in their everyday lives, although support and adaptations are needed. The recovery process of people with stroke could benefit from the use of ICT in the rehabilitation and ICT could possibly contribute to independence and promote participation in everyday life. Knowledge from this study can be used in the development of an ICT-based stroke rehabilitation model.
Book
Interprofessional Rehabilitation: a Person-Centred Approach is a concise and readable introduction to the principles and practice of a person-centred interprofessional approach to rehabilitation, based upon a firm scientific evidence base. Written by a multi-contributor team of specialists in physiotherapy, occupational therapy, nursing, psychology and rehabilitation medicine, this text draws together common themes that cut across the different professional groups and the spectrum of health conditions requiring rehabilitation, and sets out a model of practice that is tailored to the specific needs of the client. Showing interprofessionalism at work in a range of clinical contexts, the book argues that effective rehabilitation is best conducted by well-integrated teams of specialists working in an interdisciplinary way, with the client or patient actively involved in all stages of the process. This book will be essential reading for students preparing for practice in an increasingly interprofessional environment, and will be of interest to any health care practitioner keen to understand how an integrated approach to rehabilitation can benefit their clients.
Article
To examine the empirical literature regarding the risk of burden experienced by the older adult caregiver of the stroke survivor. The scope of this review was limited to older adult family members caring for older adult stroke survivors as evidenced in the literature written between the years of 2009-2014. This article will explore published research within the past five years (2009-2014) that addresses the issue of burden among older adult caregivers of stroke survivors in addition to the implication for the changes needed within the nursing profession to mitigating the burden experienced by the caregiver. Many stroke survivors are in their 6th decade of life or older, with caregivers approximately the same age. This literature review specifically focuses on the role of nursing and the issue of caregiver burden. Literature Review. A review of the literature published between 2009-2014 related to the lived experience of caregivers of stroke survivors and the role of nursing related to mitigating caregiver burden. Numerous factors impact the lived experience of caregivers providing care for the stroke survivor. Assuming the role of caregiver has an inherent risk which can result in health compromises for the caregiver. It is the responsibility of the nurse to assess, design interventions and provide education to prepare the caregiver for the demands of the role. The literature review has shown that research regarding the risk of caregiver burden and the resulting health compromise is scarce. In addition, there is a lack of evidence-based nursing interventions aimed at assuaging the risk of caregiver burden. Caregiver stress culminating in burden is commonly a reason for the eventual institutionalisation of the stroke survivor. Critically assessing and providing for the physical, psychosocial and educational support needs of stroke caregivers will assist in mitigating the daily burden experienced by the caregiver. Caregiver burden often results in psychological and physical health compromise for the caregiver. This literature review will address the role of the caregiver and the responsibilities of nursing to meet the needs of the caregiver. © 2015 John Wiley & Sons Ltd.
Article
Informal caregivers are vital to the long-term care and rehabilitation of stroke survivors worldwide. However, caregiving has been associated with negative psychological outcomes such as anxiety and depression, which leads to concerns about caregiver as well as stroke survivor well-being. Furthermore, caregivers may not receive the support and service provision they require from the hospitals and community. This study examines caregiver psychological well-being and satisfaction with service provision in the context of stroke. Caregiver data were collected as part of the ASPIRE-S study, a prospective study of secondary prevention and rehabilitation which assessed stroke patients and their carers at six-months post stroke. Carer assessment included measurement of demographics, satisfaction with care (UK Healthcare Commission National Patient Survey of Stroke Care), psychological distress (Hospital Anxiety and Depression Scale), and vulnerability (Vulnerable Elders Scale). Logistic regression analyses and chi-squared tests were performed using stata version 12. Analyses from 162 carers showed substantial levels of dissatisfaction (37·9%) with community and hospital services, as well as notable levels of anxiety (31·3%) and depressive symptoms (18·8%) among caregivers. Caregiver anxiety was predicted by stroke survivor anxiety (OR = 3·47, 95% CI 1·35-8·93), depression (OR = 5·17, 95% CI 1·83-14·58), and stroke survivor cognitive impairment (OR 2·35, 95% CI 1·00-5·31). Caregiver depression was predicted by stroke survivor anxiety (OR = 4·41, 95% CI 1·53-12·72) and stroke survivor depression (OR = 6·91, 95% CI 2·26-21·17). Findings indicate that caregiver and stroke survivor well-being are interdependent. Thus, early interventions, including increased training and support programs that include caregivers, are likely to reduce the risk of negative emotional outcomes. © 2015 World Stroke Organization.
Article
Objective: To understand stroke survivors and their caregivers' experience and acceptability of using the Nintendo Wii Sports™ games (Wii™) as a home-based arm rehabilitation tool. Design: A qualitative study within a randomized controlled trial investigating the effectiveness of using the Wii™ for arm rehabilitation. Data were analysed using thematic analysis. Settings: Participants and carers were interviewed in their homes. Subjects: Eleven male and seven female participants and 10 caregivers who were taking part in the randomized controlled trial within six months of stroke. Median age 65. Intervention: All participants were using the Wii™ for arm rehabilitation. Main measures: Semi-structured interviews. Results: Five themes were identified: diligence of play, perceived effectiveness, acceptability, caregiver and social support, and the set-up and administration of the Wii™. Participants appreciated the ability to maintain a social role and manage other comorbidities around the use of the Wii™. A small number of participants found the Mii characters too childlike for adult rehabilitation. The most popular game to start the rehabilitation programme was bowling. As confidence grew, tennis was the most popular, with baseball and boxing being the least popular games. Caregivers provided some practical support and encouragement to play the Wii™. Conclusions: The Wii™ may provide an engaging and flexible form of rehabilitation with relatively high reported usage rates in a home setting. The Wii™ was acceptable to this sample of patients and their caregivers in home-based rehabilitation of the arm following stroke.
Article
Stroke is a leading cause of severe, long-term disability. Most stroke survivors are cared for in the home by a family caregiver. Caregiver stress is a leading cause of stroke survivor institutionalization, which results in significant costs to the healthcare system. Stroke family caregiver and dyad intervention studies have reported a variety of outcomes. A critical analysis of 17 caregiver intervention studies and 15 caregiver/stroke survivor dyad intervention studies was conducted to provide evidence-based recommendations for the implementation and future design of stroke family caregiver and dyad interventions.
Article
Disjointed patient care is a well-documented problem in health care systems, often stemming from poor communication between providers, services, and follow-up care resources. A multidisciplinary discharge huddle, augmented with cellular and tablet technology, was implemented on the Neurology Stroke Service to facilitate multidisciplinary communication, improve transition of patients, and increase referrals into affiliated follow-up care. After initiating the huddle, patient length of stay decreased by 1.4 days (25%), patient flow into continuum partners increased by 10%, and the number of patients going without services after their hospital stay decreased by more than 12%. Huddle members reported that the technology was helpful, heavily utilized, and made their work more efficient. This pilot suggests that utilizing modern mobile technologies can help improve efficiency and referrals within the health care system and reduce patient length of stay.
Article
Research indicates a need for improved caregiver preparation to provide care following a patient's discharge from inpatient rehabilitation. The aim of this project was to test the use of web-based resources to enhance the preparedness and satisfaction of such caregivers. A website was provided to caregivers with resources and e-mail access to a rehabilitation nurse practitioner. Care recipients had the following diagnoses: stroke, amputation, trauma/orthopedic, brain injury or debility. Preparedness for caregiving was assessed before utilization of the website and after discharge. Satisfaction of the resources was assessed after discharge. Measures included the Preparedness for Caregiver Scale and the Client Satisfaction Questionnaire. Seventy caregivers completed the predischarge preparedness tool. Thirty returned both tools postdischarge. Analysis of pre-post test data indicated increased preparedness to provide care after resource use, no increase meeting the caregiver's personal needs, and satisfaction with the resources provided. The caregivers of brain-injured patients reported less preparation as caregivers than those who cared for patients with other diagnoses. Although high interest was reported in using e-mail with the nurse practitioner, the resource was not utilized. This preliminary study supports the clinical relevance of Internet resources to improve caregiver preparation. With shortened hospital stays, providing applicable and evidence-based websites and other online services for caregivers can complement other healthcare services. More research focused on preparing caregivers and supporting personal caregiver needs is needed to evaluate the impact on overall rehabilitation outcomes.
Article
Objective: To synthesize patients' views on the impact of stroke on their roles and self. Data sources: PubMed, CINAHL, Embase, PsycINFO, and Cochrane searched from inception to September 2010, using a combination of relevant Medical Subject Headings and free-text terms. This search was supplemented by reference tracking. Study selection: Qualitative studies reporting the views of people poststroke. The search yielded 494 records. Opinion articles, quantitative studies, or those reporting somatic functioning were excluded. Thirty-three studies were included. Data extraction: Data extraction involved identifying all text presented as "results" or "findings" in the included studies, and importing this into software for the analysis of qualitative data. Data synthesis: The abstracted text was coded and then subject to a thematic analysis and synthesis, which was discussed and agreed by the research team. Three overarching themes were identified: (1) managing discontinuity is a struggle; (2) regaining roles: to continue or adapt? and (3) context influences management of roles and self. Regaining valued roles and self was an ongoing struggle, and discontinuity and uncertainty were central to the adjustment process after stroke. Conclusions: The thematic synthesis provides new insights into the poststroke experience. Regaining or developing a new self and roles was problematic. Interventions targeted at self-management should be focused on the recognition of this problem and included in rehabilitation, to facilitate adjustment and continuity as far as possible in life poststroke.
Article
The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers’ social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.
Article
The aim of this study was to examine in depth how computer-based assistive technology (AT) for cognitive support influenced the everyday lives of both persons who had had a stroke and their significant others. Four participants, who had experienced cognitive limitations after a stroke, and their significant others were included in the study. The study included an intervention with a specific type of computer-based AT that was installed in the homes of the four participants for a 6-month period. Semistructured interviews were conducted before the installation to learn about the participants needs and repeated interviews took place after the installation. All collected data were analyzed based on qualitative methodology. The findings illustrated how routines developed with support from the AT influenced the participants towards increased control of their everyday life, and also created daily structure and helped them regain social contacts. The findings demonstrated how the spouses also benefitted and could reduce their reminding and checking responsibilities. Computer-based AT has the potential to bring about changes in the everyday life for people with cognitive limitations by supporting the development of routines and by introducing, maintaining, reinforcing or regaining valuable activities.
Article
To investigate how contextual factors, as described by the World Health Organisation's International Classification of Functioning, Disability and Health (ICF), impact on stroke survivors' functioning and how needs are perceived in the long term after stroke. Semi-structured interviews were conducted with 35 participants between 1 and 11 years after stroke. Data were analysed thematically using the ICF conceptual framework. Long-term needs related to activities of daily living, social participation, mobility aids, home adaptations, housing, financial support, rehabilitation, information and transport. Participants identified a range of ICF environmental and personal factors including 'support and relationships,' 'products and technology,' 'services, systems and policies,' 'attitudes,' life experiences, social position and personal attitudes. Interactions between these contextual factors shaped functioning and how long-term needs were perceived. Social support from family and friends was a key facilitator of functioning for most participants, buffering the impact of disabilities and mediating perceived needs. Needs were not always stroke specific as many participants experienced other health problems. The ICF framework was useful to investigate how contextual factors shaped functioning and mediated perceived long-term needs. Development of services to meet long-term needs among stroke survivors should consider the range of environmental and personal factors affecting how needs are perceived.
Article
Background: Studies into caregivers usually have been focused on negative caregiving experiences. This study is based on the hypotheses that positive caregiving experiences (i.e., self-esteem derived from caregiving) of spouses of stroke patients also need to be taken into account, and that these are related to life satisfaction in 2 ways: first, by a direct association with life satisfaction, and second, indirectly by way of a buffer effect (i.e., by compensating for the impact of negative caregiving experiences on life satisfaction). Methods: In this cross-sectional study (n = 121) 3 years poststroke, the Caregiver Reaction Assessment was used to assess caregiver burden (Burden) and self-esteem derived from caregiving (Self-esteem scale). Life satisfaction was measured with the Life Satisfaction Questionnaire (LiSat-9). Spearman correlations and regression analyses were performed. Results: Both Self-esteem and Burden scores were associated with life satisfaction (correlation coefficients 0.35 and -0.74, respectively). An interaction effect was also found (P = .006); spouses who perceived both high Burden and high Self-esteem reported significantly higher life satisfaction scores (mean 4.2, standard deviation [SD] 0.5) than spouses who perceived high Burden but low Self-esteem (mean 3.6, SD 0.7). Conclusions: Positive caregiving experiences are related to spouses' life satisfaction 3 years poststroke and mediate the impact of burden on life satisfaction. Positive caregiving experiences should get more attention in rehabilitation research and practice.
Article
 To expand understanding of informal stroke care-giving, validated tools previously used in Hong Kong and in the U.K. were used with Australian stroke carers to assess their stroke-related knowledge, perceived needs, satisfaction with services received and sense of burden after stroke patients' discharge home from acute hospital care.  Record audit and telephone interviews with two cohorts of 32 carers recruited in Sydney and Brisbane 1 and 3 months post-hospital discharge, using validated scales and open questions in May-July 2006.  Female carers, those with prior care-giving responsibility, and those interviewed at three compared to one month post-discharge reported greatest needs and burden from the care-giving role; needs alone significantly predicted burden. Getting information and being prepared for life after discharge were central concerns. Some felt this was accomplished, but inadequate information giving and communication mismatches were apparent.  Service providers need to develop partnership working with stroke families and provide a network of services and inputs that cut across conventional boundaries between health and social care, public, private and voluntary organisations, with care plans that deliver what they delineate. Stroke care-givers have common issues across countries and healthcare systems; collaborative research-based service development is advocated.
Article
(1) Describe the challenges facing relatives of persons with stroke in accomplishing their daily activities and social roles (participation). (2) Reflect on the role of rehabilitation for relatives and ethical issues that may emerge following the adoption of a family-centred approach. Review of the scientific literature in Medline (1996 to July 2009), Embase (1996 to July 2009) databases using keywords: stroke AND participation AND family OR spouse OR caregivers AND ethics AND burden. Selection criteria were as follows: study must examine the participation of relatives post-stroke (or equivalent concept such as burden), rehabilitation interventions for relatives post-stroke or ethical issues related to being a relative of a person with stroke. Articles not written in English or French were excluded. The sample comprised 17 scientific articles. According to five studies, social participation of relatives is characterised by increased responsibilities and a reduction in interpersonal relationships and leisure. In rehabilitation, there is no consensus regarding what should be done for relatives; guidelines exist but are not applied in practice. Little has been formally reported regarding ethical issues likely to emerge for relatives. The main impact of stroke is on social roles of relatives such as responsibilities, interpersonal relationships and leisure. The role of rehabilitation and related ethical issues needs further examination.
Article
Stroke is the second most common cause of death and major cause of disability worldwide. Because of the ageing population, the burden will increase greatly during the next 20 years, especially in developing countries. Advances have occurred in the prevention and treatment of stroke during the past decade. For patients with acute stroke, management in a stroke care unit, intravenous tissue plasminogen activator within 3 h or aspirin within 48 h of stroke onset, and decompressive surgery for supratentorial malignant hemispheric cerebral infarction are interventions of proven benefit; several other interventions are being assessed. Proven secondary prevention strategies are warfarin for patients with atrial fibrillation, endarterectomy for symptomatic carotid stenosis, antiplatelet agents, and cholesterol reduction. The most important intervention is the management of patients in stroke care units because these provide a framework within which further study might be undertaken. These advances have exposed a worldwide shortage of stroke health-care workers, especially in developing countries.
  • G A Donnan
  • M Fisher
  • M Macleod
Donnan GA, Fisher M, Macleod M, et al. Stroke. Lancet. 2008;371:1612-1623.
Interprofessional rehabilitation: a person-centred approach
  • S G Dean
  • R J Siegert
  • W J Taylor
Dean SG, Siegert RJ, Taylor WJ, editors. Interprofessional rehabilitation: a person-centred approach. Chichester, West Sussex. Ames, Iowa: Wiley-Blackwell; 2012.
Selvhjulpenhed, recovery og aktiv deltagelse understttet af velfaerdsteknologi
  • K Frederiksberg
Frederiksberg K. Selvhjulpenhed, recovery og aktiv deltagelse understttet af velfaerdsteknologi. Plan 2015-2018 [Internet]; 2014 [cited 2017 Oct 25]. Available from: www. frederiksberg.dk//media/eDoc/2/4/0/240813-2510457-13-pdf.ashx].
Kvalitative metoder: en grundbog. Kbh.: Hans Reitzel
  • S Brinkmann
  • L Tanggaard
Brinkmann S, Tanggaard L. Kvalitative metoder: en grundbog. Kbh.: Hans Reitzel; 2015.
Frederiksberg: Samfundslitteratur
  • B Halkier
  • Fokusgrupper
Halkier B. Fokusgrupper. 2nd ed. Frederiksberg: Samfundslitteratur; 2012.
Fokusgrupper som forskningsmetode for medisin og helsefag. Oslo: Universitetsforlaget
  • K Malterud
Malterud K. Fokusgrupper som forskningsmetode for medisin og helsefag. Oslo: Universitetsforlaget; 2012.
Visionen f€ or e-h€ alsoarbetet
  • Sveriges Kommuner Och Landsting
Sveriges kommuner och Landsting. Visionen f€ or e-h€ alsoarbetet [Internet]; 2017 [cited 2018 Dec 14]. Available from: https://skl.se/halsasjukvard/ehalsa/visionenehalsoarbetet.8859.html.
Fremtidens velfaerd med ny teknologi
  • Esbjerg Kommune
Esbjerg kommune. Fremtidens velfaerd med ny teknologi [Internet]. 2016 [cited 2018 Jan 22]. Available from: http:// dinsundhed.esbjergkommune.dk/om-sundhed/politikker-oghandleplaner/strategi-for-velfaerdsteknologi.aspx.
utilising a user-centred design methodology
utilising a user-centred design methodology. Disabil Rehabil Assist Technol. 2014;9:521-528.