The requirements, the relationships, and the rules: experiences and perceptions of how time is spent supporting recovery on a stroke rehabilitation unit for stroke survivors with aphasia

The experience of stroke survivors and caregivers during hospital-to-home transitional care: A qualitative longitudinal study

Purpose: Studies highlighting the time spent in self-isolating and inactive activities during stroke rehabilitation have led to the introduction of group programs and environmental enrichment to improve activity levels. A less explored perspective is to understand how the introduced changes align with the occupational needs of the stroke survivors. Therefore, the aim of this study was to explore stroke survivors experiences of engagement in occupations during stroke rehabilitation.Methods: A descriptive phenomenological approach with semi-structured interviews explored stroke survivors experiences.Results: Eight participants (five male and three female, mean age 72 years) described their experiences with two themes emerging: (1) “I’m here for that reason:” which highlighted therapy as an occupation which participants wanted to perform and (2) “Celebration of quiet moments:” exploring the value of rest and recreation.Conclusion: This study provides a preliminary understanding of how stroke survivors experience occupational engagement during rehabilitation. There was an apparent shift in priorities with therapy considered the most important occupation and a strong need expressed for rest and relaxation to be factored into people’s days. It appears the increasing activity levels may not always align with people’s occupations and that due consideration of this malalignment may further enhance engagement and outcomes.Implications for rehabilitationDuring hospital-based stroke rehabilitation, stroke survivors prioritized the occupations of therapy, rest, and recreation.People with stroke are motivated to participate when the activities within and outside of, therapy align with their pre-stroke life and occupations.A daily stroke rehabilitation program should be balanced with opportunities for rest to support recovery time from therapy and possible consolidation of learning

REVIEW QUESTION / OBJECTIVE The overall aim of this qualitative systematic review is to explore the personal experiences of stroke survivors, their families and unpaid carers in goal setting in stroke rehabilitation. The objectives of this review are to: 1. Describe the experiences of stroke survivors, their families and unpaid carers in goal setting in stroke rehabilitation 2. Identify whether stroke survivors, their families and unpaid carers consider the impact of goal setting on the person-centeredness of the rehabilitation approach 3. Ascertain whether stroke survivors, their families and unpaid carers consider if goal setting enables them to effectively self manage their condition. INCLUSION CRITERIA Types of participants This review will consider studies that include adults (18 years old and over) who have experienced a stroke and undergone rehabilitation (as an inpatient or an outpatient), and their families and unpaid carers. Family members who care directly for their stroke survivor spouse or relative will be included. Family members who do not provide direct care but live with their stroke survivor spouse or relative will be included. Others who provide direct care, but are not paid or related to the stroke survivor, will be included. Paid carers (non-family) or family members who neither live with nor care for a stroke survivor will be excluded. Phenomena of interest Studies that investigate the experiences of stroke survivors, their families and unpaid carers regarding goal setting within rehabilitation will be considered. Studies investigating stroke rehabilitation goal setting as the entire focus, or those where it TRUNCATED AT 250 WORDS

The objective of the review was to synthesize the best available qualitative evidence regarding the experiences of stroke survivors, their families and unpaid carers, about goal setting within stroke rehabilitation. Clinical guidelines recommend person-centered goal setting in stroke rehabilitation but many barriers exist to its implementation. Individual differences and preferences, of both the stroke survivor and practitioner, may influence involvement in goal setting. A stroke survivor's relationship with close family members and unpaid carers can be powerful and could influence rehabilitation, recovery and goal setting. The participants of interest were adults (over 18 years) who had experienced a stroke and undergone rehabilitation, and their families and unpaid carers. The phenomena of interest were the experiences of goal setting within stroke rehabilitation for stroke survivors, their families and unpaid carers. The context was stroke rehabilitation in acute and community hospitals, inpatient rehabilitation units and the community. Studies considered for this review were qualitative primary research studies and the qualitative portion of mixed methods research. A three-step search strategy was used to identify English language qualitative primary research studies (both published and unpublished) through November 2017. Two reviewers independently appraised the included studies using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research. Studies were included if they achieved 50% "yes" results for the methodological assessment. Data were extracted from the included papers using the standardized JBI qualitative data extraction tool. Data were synthesized using meta-aggregation. Four studies were included in this review, from which 44 findings were extracted. These were aggregated into 12 categories and four synthesized findings: (1) Person-centered goal setting is possible but often does not occur; (2) Practitioners shape the context of goal setting; (3) Practitioners need to listen to the person and know "who they are" - there is a need for an individualized approach to goal setting; (4) Recovery is ongoing and unpredictable. No findings reporting the experiences of goal setting from the perspective of family or unpaid carers were found, therefore all findings represent stroke survivor experiences. The role of goal setting in self-management could not be extracted from the data. Person-centered goal setting within stroke rehabilitation is both possible and rewarding but often does not occur. Goal setting contributes to the post-stroke rehabilitation experience and can be positively or negatively influenced by practitioners. Maintaining hope and a sense of forward momentum in recovery after stroke is perceived by stroke survivors as important and could be supported using goal setting that is tailored to the individual's needs and preferences. Future research should focus on refining individualized methods of goal setting in stroke rehabilitation and the role of the practitioner in this, including what skills are needed and how they can be acquired. The identified gaps in the literature about family members' and unpaid carers' experiences, and the role of goal setting in self-management, warrant further research.

Background While stroke survivors with persistent pain consider mind-body therapies useful, physiotherapists have reported that consumers may not see mind-body therapies as within their role. Objective To explore the perceptions and experiences of stroke survivors with pain regarding physiotherapists’ provision of mind-body therapies. Methods Fifteen Australian stroke survivors with pain (11 women/4 men, aged 28–84 years, 5 months to 84 years post-stroke) participated in qualitative semi-structured interviews using a study-specific interview guide comprising eight primary questions regarding their demographics, perceptions and experiences of stroke, pain, mind-body therapies and physiotherapists providing mind-body therapies. Data were analyzed using reflexive thematic analysis and the COREQ guidelines informed the reporting of the study. Results We generated five themes to describe participants’ perceptions and experiences of physiotherapists’ use of mind-body therapies. Theme 1 detailed support for physiotherapists providing or referring for mind-body therapies. Theme 2 described that physiotherapists being trusted health professionals would increase consumers’ use of mind-body therapies. Theme 3 collated perceptions that physiotherapists’ low use of mind-body therapies may be related to limited skills/knowledge regarding the mind-body connection. Theme 4 summarized perceptions about physiotherapists’ training needs. Finally, Theme 5 presented responses regarding the perceived scope of practice for physiotherapists regarding mind-body therapies. Conclusion Stroke survivors with pain see physiotherapists as trusted health professionals and would like them to provide, recommend, or refer for mind-body therapies as guided by scientific literature or past patient experience. Increased training for physiotherapists, including experiential practice and content on psychological aspects of persistent pain and the mind-body connection, could improve physiotherapists’ current low use of mind-body therapies. While many mind-body therapies may be within physiotherapists’ scope of practice, this requires further exploration.

BackgroundThe consequence of living as a stroke survivor has received significant attention in literature from different parts of the world. Enriching social relations and other factors are reported to influence the post-stroke experience. Differences in health systems, cultural factors and available resources have made it apt to explore the experience of life after a stroke in Nigerian stroke survivors. This study explored the lived experiences of Nigerian adult stroke survivors, with a focus on their concerns, hopes, dreams and daily routine experiences.MethodsThis qualitative study employed a phenomenological approach based on in-depth interviews with stroke survivors. Interpretative phenomenological analysis was used to analyse the in-depth exploration of the personal experiences of these stroke survivors and the meanings they attached to that experience.ResultsThe participants in this study described their experiences, emphasising both the visible loss of mobility and emotional issues related to their condition. Three superordinate themes were identified: (1) stroke presentation; (2) affect, coping, and adaptation; and (3) social supports.ConclusionThe study concluded that the experience of Nigerian stroke survivors is unique as it is a blend of supportive and non-supportive care scenarios, which is greatly associated with environmental and other intrinsic variables. Post-stroke mobility strongly influences the overall stroke experience.

Purpose To explore how stroke survivors experience and prefer to participate in clinical reasoning processes in the subacute phase of stroke rehabilitation. Methods An explorative qualitative design was used. Individual interviews were conducted with 10 stroke survivors (4 women and 6 men, mean age 68 years) 4 weeks after their stroke, and follow-up interviews were conducted with 6 of them after 10 weeks. The interview settings were the patient’s home during their home rehabilitation, an inpatient and an outpatient rehabilitation unit. A reflexive thematic analysis was performed. Results Four themes were identified: discharge as a critical point for participation, describing a stressful time with varying involvement; supportive actions and context as crucial for participation, describing collaboration with the stroke team, the team’s consideration of the stroke survivor’s resources and needs, and a supportive home environment; the importance of goals and follow-up, describing goals as motivational and an unstructured use of goals; and difficulties in participation, describing a lack of dialogue with the stroke team and undetected resources and needs. Conclusions The stroke survivors experienced changes in their participation in the clinical reasoning process as their rehabilitation progressed. They moved from perceiving themselves as passengers at the time of their hospital discharge to gradually seeing themselves as the driver of their rehabilitation process. Some person-centered attributes, such as respectful relationships and a health focus, were incorporated into the clinical reasoning, while others, such as a holistic view and shared goal-setting, required further emphasis for improved person-centeredness in stroke rehabilitation.

Use of VR-games is considered a promising treatment approach in stroke rehabilitation. However, there is little knowledge on the use and expectations of patients and health professionals regarding the use of treadmill walking in a fully immersive virtual environment as a rehabilitation tool for gait training for stroke survivors. The objectives of the current study were to determine whether stroke survivors can use fully immersive VR utilizing modern HMDs while walking on a treadmill without adverse effects, and to investigate the experiences of stroke survivors and clinicians after testing with focus on acceptability and potential utilization in rehabilitation. A qualitative research design with semi-structured interviews was used to collect data. Five stroke survivors and five clinicians participated in the study and tested a custom-made VR-game on the treadmill before participating in individual semi-structured interview. Data were analyzed through thematic analysis. The analysis of the interview data identified two main categories: (1) experiencing acceptability through safety and motivation, and (2) implementing fully immersive VR in rehabilitation. Both stroke survivors' and clinicians enjoyed the treadmill-based VR-game and felt safe when using it. The stroke survivors experienced motivation for exercising and achievement by fulfilling tasks during the gaming session as the VR-game was engaging. The clinicians found additional motivation by competing in the game. Both groups saw a potential for use in gait rehabilitation after stroke, on the premise of individual adaptation to each patient's needs, and the technology being easy to use. The findings from this qualitative study suggest that a fully immersive treadmill-based VR-game is acceptable and potentially useful as part of gait rehabilitation after stroke, as it was positively received by both stroke survivors and clinicians working within stroke rehabilitation. The participants reported that they experienced motivation in the game through safety, engagement and achievement. They also saw the potential of implementing such a setup in their own rehabilitation setting. Elements that enable safety and engaging experience are important to maintain when using a fully immersive VR-game in stroke rehabilitation.

ObjectiveTo explore how stroke survivors experience and prefer to participate in clinical reasoning processes in the acute phase of stroke care. MethodsAn explorative qualitative design was used. Individual interviews were conducted with 11 stroke survivors in the acute phase of care and analyzed using reflexive thematic analysis. ResultsThe analysis identified five themes: What’s going on with me?; Being a recipient of care and treatment; The need to be supported to participate; To be seen and strengthened; and Collaboration and joint understanding. ConclusionStroke survivors experience many attributes of person-centeredness in the acute phase of care but, according to their stories, their participation in clinical reasoning can be further supported. The tension between surrendering and the desire to be more actively involved in the care needs to be considered to facilitate participation in clinical reasoning. Practice ImplicationsStroke survivors’ participation in clinical reasoning in the acute phase can be facilitated by health professionals noticing signs prompting a shift towards increased willingness to participate. Furthermore, health professionals need to take an active role, sharing their expertise and inviting the stroke survivors to share their perspective. The findings can contribute to further develop person-centered care in acute settings.

# Background Strokes result in devastating consequences to both the survivors and caregivers, therefore it is important that it is appropriately managed and caregivers are well supported. In order to do this effectively, we need a better understanding of the challenges faced by stroke survivors and their caregivers, in a country with limited provisions for rehabilitation. Our aim was to explore the experiences of stroke survivors and their caregivers' 1-year post discharge from stroke rehabilitation in Bangladesh. # Methods Twenty stroke survivors and their caregivers were selected for our qualitative, single-centred study. Participants were chosen using a convenience sampling method. A semi-structured questionnaire was used to collect data during face-to-face interviews. Six themes were deciphered following analysis of the data collected. # Results There was a low return to work rate and poor awareness of stroke and its risk factors. There was no provision of rehabilitation whilst in hospital or at home and a lack of advice on how to access rehabilitation after hospital. Stroke survivors and caregivers\' experienced physical, social and emotional wellbeing challenges. # Conclusions Schemes to increase the awareness of stroke and its risk factors are needed to reduce the incidence of stroke. Earlier access to rehabilitation and ongoing support and training through implementation of a stroke pathway may improve outcomes for stroke survivors and caregivers. Future research should investigate the challenges of returning to work and the experiences of stroke survivors and caregivers who did not receive rehabilitation.

# Background Strokes result in devastating consequences to both the survivors and caregivers, therefore it is important that it is appropriately managed and caregivers are well supported. In order to do this effectively, we need a better understanding of the challenges faced by stroke survivors and their caregivers, in a country with limited provisions for rehabilitation. Our aim was to explore the experiences of stroke survivors and their caregivers' 1-year post discharge from stroke rehabilitation in Bangladesh. # Methods Twenty stroke survivors and their caregivers were selected for our qualitative, single-centred study. Participants were chosen using a convenience sampling method. A semi-structured questionnaire was used to collect data during face-to-face interviews. Six themes were deciphered following analysis of the data collected. # Results There was a low return to work rate and poor awareness of stroke and its risk factors. There was no provision of rehabilitation whilst in hospital or at home and a lack of advice on how to access rehabilitation after hospital. Stroke survivors and caregivers\' experienced physical, social and emotional wellbeing challenges. # Conclusions Schemes to increase the awareness of stroke and its risk factors are needed to reduce the incidence of stroke. Earlier access to rehabilitation and ongoing support and training through implementation of a stroke pathway may improve outcomes for stroke survivors and caregivers. Future research should investigate the challenges of returning to work and the experiences of stroke survivors and caregivers who did not receive rehabilitation.

To explore stroke survivors' experiences of healthcare-related facilitators and barriers concerning return to work after stroke. A qualitative study. Outpatient stroke rehabilitation unit at a University Hospital in southern Sweden. A convenient sample of 20 persons admitted to Skåne University Hospital for acute stroke care (median age 52 years), in employment of at least 10 h per week at stroke onset and having been referred to stroke rehabilitation within 180 days. The interviews were performed by focus groups, and the data were analysed by content analysis. Facilitating factors were a tailored rehabilitation content with relevant treatments, adequate timing and a structured stepwise return-to-work process. A lack of sufficient early healthcare information, rehabilitation planning and coordination were perceived as barriers. An early rehabilitation plan, a contact person, and improved communication between rehabilitation actors were requested, as well as help with work transport, home care, children and psychosocial support for families. Tailored rehabilitation content and a structured stepwise return-to-work process facilitated return to work. Insufficient structure within the healthcare system and lack of support in daily life were perceived barriers to return to work, and need to be improved. These aspects should be considered in the return-to-work process after stroke.

Stroke survivors’ experiences of somatosensory impairment after stroke: An Interpretative Phenomenological Analysis

Stroke affects many aspects of the lives of stroke survivors and their family caregivers. Supporting long-term recovery and rehabilitation are necessary to help stroke survivors adapt to living with the effects of stroke and to help family members adapt to the caregiving role. During recovery and rehabilitation, many elements of the health care continuum are utilized, including emergency response, acute care, inpatient and outpatient rehabilitation, and community and long-term care. With the advent of thrombolytic therapy and the benefits of stroke units, stroke survival and outcomes are improving. As a result, the current emphasis of stroke system improvement is to implement stroke units throughout the developed world. To enhance the patient centeredness of stroke care delivery, an important next phase of stroke system improvement will center on the experiences of stroke survivors and their family caregivers as they move through diverse care environments. The objective of this article was to conduct a scoping review of the literature on stroke transitions to identify the current areas of research emphasis. This article highlights stroke survivors' and family caregivers' experiences with transitions across care environment and some potential strategies to improve those transitions.

BackgroundStroke survivors are more sedentary than healthy, age-matched controls, independent of functional capacity. Interventions are needed to encourage a reduction in overall sedentary time, and regular breaks in prolonged periods of sedentary behaviour. This study captured the views and experiences of stroke survivors and their caregivers related to sedentary behaviour after stroke, to inform the development of an intervention to reduce sedentary behaviour.MethodsMixed-methods qualitative study. Non-participant observations were completed in two stroke services, inclusive of inpatient and community settings in the United Kingdom. Semi-structured interviews were conducted with stroke survivors and their caregivers (if available) at six- or nine-months post-stroke. Underpinned by the capability, opportunity and motivation (COM-B) model of behaviour change, observational data (132 h) were analysed thematically and interview data (n = 31 stroke survivors, n = 12 caregivers) were analysed using the Framework approach.ResultsObservation participants differed in functional ability whereas stroke survivor interviewees were all ambulant. Six themes related to sedentary behaviour after stroke were generated: (1) sedentary behaviour levels and patterns after stroke; (2) the physical and social environment in the stroke service and in the home; (3) standing and movement capability after stroke; (4) emotion and motivation after stroke; (5) caregivers’ influence on, and role in influencing stroke survivors’ sedentary behaviour; and (6) intervening to reduce sedentary behaviour after stroke. Capability, opportunity and motivation were influenced by the impact of the stroke and caregivers’ inclination to support sedentary behaviour reduction. Stroke survivors reported being more sedentary than they were pre-stroke due to impaired balance and co-ordination, increased fatigue, and reduced confidence in mobilising. Caregivers inclination to support stroke survivors to reduce sedentary behaviour depended on factors including their willingness to withdraw from the caregiver role, and their perception of whether the stroke survivor would act on their encouragement.ConclusionsMany stroke survivors indicate being open to reducing sedentary behaviour, with appropriate support from stroke service staff and caregivers. The findings from this study have contributed to an intervention development process using the Behaviour Change Wheel (BCW) approach to develop strategies to reduce sedentary behaviour after stroke.