Qualitative exploration of the benefits of group-based memory rehabilitation for people with neurological disabilities: implications for rehabilitation delivery and evaluation

Objective: To identify patient-perceived benefits of memory rehabilitation and draw transferrable lessons for the delivery and evaluation of similar interventions for people with neurological disabilities. Methods: A qualitative study was conducted as part of a pragmatic randomised controlled trial comparing 2 memory rehabilitation approaches with a self-help control group. Postintervention interviews were conducted with 20 participants with a diagnosis of traumatic brain injury, multiple sclerosis or stroke. Data were analysed using a qualitative content analysis approach. Results: Participants receiving memory rehabilitation reported that the sessions responded to previously unmet needs for information on brain injury and memory function and developed their insight along with a sense of self-efficacy and control over the management of their memory problems. Although they did not experience major improvements in their memory function per se, they reported that rehabilitation gave them the skills to effectively cope with the residual deficits. Respondents in the control groups did not report similar benefits. The opportunities for interaction offered by the group setting were greatly valued by all respondents. Mixed aetiology groups were received positively; however, marked differences in cognitive performance were frustrating for some participants. Conclusions: The study highlighted important patient-perceived outcomes that should be considered by researchers and rehabilitation professionals when evaluating the effects of memory rehabilitation. The use of domain-specific outcome measures which reflect these areas is recommended. Qualitative changes in the use of memory aids may be achieved which cannot be captured by frequency indices alone. The benefits of the group-based rehabilitation approach were stressed by participants, suggesting that a combination of group and individual sessions might be a good practice

The development of a questionnaire assessing the outcome of memory rehabilitation for people with acquired brain injury

Part A: Memory rehabilitation is a promising approach to address memory difficulties although its effectiveness with neurologically impaired individuals is yet to be established (Chapter 1). This thesis was conducted within the context of the pilot and main phase of a randomised controlled trial (ReMind) evaluating the effectiveness of memory rehabilitation for people experiencing memory problems following traumatic brain injury (TBI), stroke and multiple sclerosis (MS). The trial compared the effects of restitutive and compensatory memory rehabilitation strategies with a self-help control intervention on memory functioning, mood, activities of daily living and mental adjustment. The quantitative data obtained in this trial did not provide strong evidence to support the effectiveness of the intervention. The use of inappropriate outcome measures may account for the contradictory or inconclusive findings of the ReMind and other memory rehabilitation studies. Chapter 2 provides a review of measures that were used in the ReMind trial and/or were commonly used to evaluate outcome in memory rehabilitation studies. A lack of measures that considers the aims of memory rehabilitation and the needs of neurologically impaired individuals was observed. The post-intervention interviews of participants (N=19) in the pilot phase of the ReMind were analysed thematically (Chapter 3). Participants reported benefits in areas that were not covered by existing quantitative outcome measures such as insight into the nature and severity of their memory problems, confidence in their ability to manage these difficulties and qualitative improvements in the use of memory aids. The aim of the following studies was to develop and evaluate a questionnaire responsive to the effects of memory rehabilitation following acquired brain injury. The process included two stages: Part B: Identification of the content of AMEDO questionnaire: At this stage, studies were conducted within the main phase of the ReMind trial. The content areas of the questionnaire were identified based on the input and feedback of participants in each of the three memory rehabilitation programmes (Restitution, Compensation and Self-help groups). A mixed methods design was followed and information was drawn from two sources: 1)Real time observations of 43 sessions were performed (Chapter 4). The study introduced a new recording strategy by using a time sampling method to qualitatively record the content of conversations. Group activity was also evaluated. Following a quantitative content analysis method, observations were grouped into categories and their frequency was assessed in order to systematically describe and compare the content of the three programmes. 2)Semi-structured post-intervention interviews were conducted with 20 participants to explore their experience in the groups (Chapter 5). Recurrent patterns of data were identified inductively following a thematic analysis approach. Interviews from each programme were analysed separately and the emerging themes were compared and contrasted to highlight similarities and differences between the programmes. The majority of participants perceived the main benefits of memory rehabilitation to be: a) responding to their need for information on the cognitive effects of brain injury, b) enhancing their sense of self-efficacy and control over their memory difficulties, c) motivating them to adopt a more proactive attitude towards the management of these problems. The advantages of the group based approach to rehabilitation were also highlighted by most respondents. Questionnaire items were generated to cover the key content areas that were identified in both studies: memory knowledge, awareness, emotional adjustment, active coping, control beliefs, attention, significant others (comprised Part A of the questionnaire), the use of external memory aids (comprised Part B1) and the use of internal memory aids (Part B2). Part C: Evaluation of the psychometric properties of Adaptation to Memory Difficulties Outcome questionnaire (AMEDO): The final study of this thesis (Chapter 6) evaluated the psychometric properties of the new questionnaire. The first version of AMEDO included 45 items rated on a 4-point Likert scale (strongly disagree-strongly agree). Face validity was assessed by researchers and clinicians experienced in the area of neurological rehabilitation. The psychometric properties of AMEDO were evaluated by posting the questionnaire to a sample of people with MS and TBI identified through hospital records. It was returned by 110 people with MS and 34 people with TBI and 87 of these participants returned the second questionnaire that was sent to assess stability. After applying the criteria of face validity, response distribution, and construct validity 15 items were retained in Part A of the questionnaire, and four items in Parts B1 and B2 respectively. The distribution of responses was acceptable for all items except for the ones assessing the use of external memory aids which displayed negative skew (ceiling effects). Principal component analysis indicated that the questionnaire captured most of the content areas it was designed to cover. Part B1 and B2 formed two distinct subscales assessing effectiveness in the use of external and internal memory aids respectively. Part A comprised three components: “Memory knowledge”, “Control” and “Emotional adjustment”. Evaluation of item-convergent validity confirmed the three factor solution. Internal consistency estimates for all the subscales were found to be satisfactory (α=.74-.84). Correlations between the subscales indicated that the represented constructs were related in meaningful ways. Test–retest reliability coefficients for the subscales ranged between r=.60 to r=.82. The biggest discrepancies were found in the “Memory knowledge” and external memory aids (EMA) subscales whereas the “Control” and “Emotional adjustment” showed acceptable levels of stability. Differences between test-retest scores in the former subscales dropped to satisfactory levels when analyses were repeated excluding respondents who completed the 2nd questionnaire more than a month after completing the 1st questionnaire. This finding indicated that the observed differences between scores at Time 1 and Time 2 may be reflective of actual changes taking place during that interval. Finally, it was shown that scores were not significantly affected by age, diagnosis and time since injury and, therefore, the questionnaire may be relevant to a wider neurological population. In conclusion, AMEDO is a brief and simple measure tailored to the characteristics and needs of neurologically impaired individuals. The questionnaire shows promise as an outcome measure specific to the effects of memory rehabilitation, to complement memory batteries and established generic measures. Further evaluation of the scale should confirm the stability of the questionnaire and assess its responsiveness to changes following memory rehabilitation

The development of a questionnaire assessing the outcome of memory rehabilitation for people with acquired brain injury

Part A: Memory rehabilitation is a promising approach to address memory difficulties although its effectiveness with neurologically impaired individuals is yet to be established (Chapter 1). This thesis was conducted within the context of the pilot and main phase of a randomised controlled trial (ReMind) evaluating the effectiveness of memory rehabilitation for people experiencing memory problems following traumatic brain injury (TBI), stroke and multiple sclerosis (MS). The trial compared the effects of restitutive and compensatory memory rehabilitation strategies with a self-help control intervention on memory functioning, mood, activities of daily living and mental adjustment. The quantitative data obtained in this trial did not provide strong evidence to support the effectiveness of the intervention. The use of inappropriate outcome measures may account for the contradictory or inconclusive findings of the ReMind and other memory rehabilitation studies. Chapter 2 provides a review of measures that were used in the ReMind trial and/or were commonly used to evaluate outcome in memory rehabilitation studies. A lack of measures that considers the aims of memory rehabilitation and the needs of neurologically impaired individuals was observed. The post-intervention interviews of participants (N=19) in the pilot phase of the ReMind were analysed thematically (Chapter 3). Participants reported benefits in areas that were not covered by existing quantitative outcome measures such as insight into the nature and severity of their memory problems, confidence in their ability to manage these difficulties and qualitative improvements in the use of memory aids. The aim of the following studies was to develop and evaluate a questionnaire responsive to the effects of memory rehabilitation following acquired brain injury. The process included two stages: Part B: Identification of the content of AMEDO questionnaire: At this stage, studies were conducted within the main phase of the ReMind trial. The content areas of the questionnaire were identified based on the input and feedback of participants in each of the three memory rehabilitation programmes (Restitution, Compensation and Self-help groups). A mixed methods design was followed and information was drawn from two sources: 1)Real time observations of 43 sessions were performed (Chapter 4). The study introduced a new recording strategy by using a time sampling method to qualitatively record the content of conversations. Group activity was also evaluated. Following a quantitative content analysis method, observations were grouped into categories and their frequency was assessed in order to systematically describe and compare the content of the three programmes. 2)Semi-structured post-intervention interviews were conducted with 20 participants to explore their experience in the groups (Chapter 5). Recurrent patterns of data were identified inductively following a thematic analysis approach. Interviews from each programme were analysed separately and the emerging themes were compared and contrasted to highlight similarities and differences between the programmes. The majority of participants perceived the main benefits of memory rehabilitation to be: a) responding to their need for information on the cognitive effects of brain injury, b) enhancing their sense of self-efficacy and control over their memory difficulties, c) motivating them to adopt a more proactive attitude towards the management of these problems. The advantages of the group based approach to rehabilitation were also highlighted by most respondents. Questionnaire items were generated to cover the key content areas that were identified in both studies: memory knowledge, awareness, emotional adjustment, active coping, control beliefs, attention, significant others (comprised Part A of the questionnaire), the use of external memory aids (comprised Part B1) and the use of internal memory aids (Part B2). Part C: Evaluation of the psychometric properties of Adaptation to Memory Difficulties Outcome questionnaire (AMEDO): The final study of this thesis (Chapter 6) evaluated the psychometric properties of the new questionnaire. The first version of AMEDO included 45 items rated on a 4-point Likert scale (strongly disagree-strongly agree). Face validity was assessed by researchers and clinicians experienced in the area of neurological rehabilitation. The psychometric properties of AMEDO were evaluated by posting the questionnaire to a sample of people with MS and TBI identified through hospital records. It was returned by 110 people with MS and 34 people with TBI and 87 of these participants returned the second questionnaire that was sent to assess stability. After applying the criteria of face validity, response distribution, and construct validity 15 items were retained in Part A of the questionnaire, and four items in Parts B1 and B2 respectively. The distribution of responses was acceptable for all items except for the ones assessing the use of external memory aids which displayed negative skew (ceiling effects). Principal component analysis indicated that the questionnaire captured most of the content areas it was designed to cover. Part B1 and B2 formed two distinct subscales assessing effectiveness in the use of external and internal memory aids respectively. Part A comprised three components: “Memory knowledge”, “Control” and “Emotional adjustment”. Evaluation of item-convergent validity confirmed the three factor solution. Internal consistency estimates for all the subscales were found to be satisfactory (α=.74-.84). Correlations between the subscales indicated that the represented constructs were related in meaningful ways. Test–retest reliability coefficients for the subscales ranged between r=.60 to r=.82. The biggest discrepancies were found in the “Memory knowledge” and external memory aids (EMA) subscales whereas the “Control” and “Emotional adjustment” showed acceptable levels of stability. Differences between test-retest scores in the former subscales dropped to satisfactory levels when analyses were repeated excluding respondents who completed the 2nd questionnaire more than a month after completing the 1st questionnaire. This finding indicated that the observed differences between scores at Time 1 and Time 2 may be reflective of actual changes taking place during that interval. Finally, it was shown that scores were not significantly affected by age, diagnosis and time since injury and, therefore, the questionnaire may be relevant to a wider neurological population. In conclusion, AMEDO is a brief and simple measure tailored to the characteristics and needs of neurologically impaired individuals. The questionnaire shows promise as an outcome measure specific to the effects of memory rehabilitation, to complement memory batteries and established generic measures. Further evaluation of the scale should confirm the stability of the questionnaire and assess its responsiveness to changes following memory rehabilitation

“We’re Not Going to Be as Prepared”: A Qualitative Study of Healthcare Trainees’ Experiences after One Year of the COVID-19 Pandemic

The COVID-19 pandemic had significant impacts on the mental health and academic experiences of healthcare trainees. Building on findings from earlier in the pandemic, we explore the impacts on healthcare trainees after a sustained pandemic period of 12–14 months, involving multiple lockdowns, changes in government COVID-19 regulations and the delivery of health education. A qualitative study was conducted between March–May 2021. Participants were 12 healthcare trainees (10 women, 2 men) of medicine, nursing, and midwifery, registered at one of three higher education institutions in the United Kingdom. Interviews were fully transcribed, and data were thematically analysed using a combination of deductive and inductive approaches. We identified three key themes with eight subthemes: (i) academic experiences (adjustment to online learning, loss of clinical experience, confidence in the university), (ii) impacts on wellbeing (psychosocial impacts, physical impacts, pandemic duration and multiple lockdowns), and (iii) support frameworks (university preparedness for increased student support needs, importance of relationship with academic tutors). Findings shed light on the long-lasting and emerging impacts of the pandemic over time. We identify support needs for trainees both during their academic studies, and as they move forwards into professional roles within the healthcare workforce. Recommendations are made for higher education institutions and healthcare employers

How do patients spend their time in stroke rehabilitation units in England? The REVIHR study

Aim: To examine how patients spend their time in stroke rehabilitation units in England.Methods: We recruited 144 patients within a month after stroke from four stroke rehabilitation units and observed their activity type, interactions and location. Each participant was observed for 1 min every 10-minutes, for a total of 20 h, over three consecutive days. Multilevel modelling was performed to assess differences across sites.Results: Across the four sites a total of 12,248 observations were performed. Patients spent on average 37% of the observed time inactive and 60% alone. A health care professional was present for 18% of the observations and patients' most frequent contact was with family members (19%). Patients were mainly physically active in the presence of therapists, but they practiced self-care activities of daily living most frequently in the presence of nursing staff. There were limited opportunities for activity away from the bedside. Significant differences were found between the units, including patients' level of contact with rehabilitation assistants and nursing staff, but not in their time with occupational therapists and physiotherapists.Conclusions: Stroke patients in England spend a large proportion of their day inactive and alone. Opportunities to promote a rehabilitation focused environment may include: a) enhancing the role of rehabilitation assistants, b) supporting nursing staff in maximising opportunities for the practice of activities of daily living and c) involving family members in the rehabilitation process

Effectiveness of stroke early supported discharge

Background Implementation of stroke early supported discharge (ESD) services has been recommended in many countries’ clinical guidelines, based on clinical trial evidence. This is the first observational study to investigate the effectiveness of ESD service models operating in real-world conditions, at scale. Methods AND RESULTS Using historical prospective data from the United Kingdom Sentinel Stroke National Audit Programme (January 1, 2016–December 31, 2016), measures of ESD effectiveness were “days to ESD” (number of days from hospital discharge to first ESD contact; n=6222), “rehabilitation intensity” (total number of treatment days/total days with ESD; n=5891), and stroke survivor outcome (modified Rankin scale at ESD discharge; n=6222). ESD service models (derived from Sentinel Stroke National Audit Programme postacute organizational audit data) were categorized with a 17-item score, reflecting adoption of ESD consensus core components (evidence-based criteria). Multilevel modeling analysis was undertaken as patients were clustered within ESD teams across the Midlands, East, and North of England (n=31). A variety of ESD service models had been adopted, as reflected by variability in the ESD consensus score. Controlling for patient characteristics and Sentinel Stroke National Audit Programme hospital score, a 1-unit increase in ESD consensus score was significantly associated with a more responsive ESD service (reduced odds of patient being seen after ≥1 day of 29% [95% CI, 1%–49%] and increased treatment intensity by 2% [95% CI, 0.3%–4%]). There was no association with stroke survivor outcome measured by the modified Rankin Scale. Conclusions This study has shown that adopting defined core components of ESD is associated with providing a more responsive and intensive ESD service. This shows that adherence to evidence-based criteria is likely to result in a more effective ESD service as defined by process measures. REGISTRATION: URL: http://www.isrctn.com/ ; Unique identifier: ISRCTN15568163

Effectiveness of Stroke Early Supported Discharge: Analysis From a National Stroke Registry

BackgroundImplementation of stroke early supported discharge (ESD) services has been recommended in many countries’ clinical guidelines, based on clinical trial evidence. This is the first observational study to investigate the effectiveness of ESD service models operating in real-world conditions, at scale.Methods AND RESULTSUsing historical prospective data from the United Kingdom Sentinel Stroke National Audit Programme (January 1, 2016–December 31, 2016), measures of ESD effectiveness were “days to ESD” (number of days from hospital discharge to first ESD contact; n=6222), “rehabilitation intensity” (total number of treatment days/total days with ESD; n=5891), and stroke survivor outcome (modified Rankin scale at ESD discharge; n=6222). ESD service models (derived from Sentinel Stroke National Audit Programme postacute organizational audit data) were categorized with a 17-item score, reflecting adoption of ESD consensus core components (evidence-based criteria). Multilevel modeling analysis was undertaken as patients were clustered within ESD teams across the Midlands, East, and North of England (n=31). A variety of ESD service models had been adopted, as reflected by variability in the ESD consensus score. Controlling for patient characteristics and Sentinel Stroke National Audit Programme hospital score, a 1-unit increase in ESD consensus score was significantly associated with a more responsive ESD service (reduced odds of patient being seen after ≥1 day of 29% [95% CI, 1%–49%] and increased treatment intensity by 2% [95% CI, 0.3%–4%]). There was no association with stroke survivor outcome measured by the modified Rankin Scale.ConclusionsThis study has shown that adopting defined core components of ESD is associated with providing a more responsive and intensive ESD service. This shows that adherence to evidence-based criteria is likely to result in a more effective ESD service as defined by process measures

A qualitative study exploring how stroke survivors’ expectations and understanding of stroke Early Supported Discharge shaped their experience and engagement with the service

Purpose: To explore how stroke survivors’ expectations and understanding of Early Supported Discharge (ESD) helped them make sense of their experiences, and shaped their engagement with the service. Methods: Data were collected as part of a study of large-scale implementation of stroke ESD: the WISE realist mixed-methods study. Semi-structured interviews were conducted with five purposefully selected stroke survivors from six sites in England implementing stroke ESD (n = 30). Participants were aged 32–88 years (20 males). Interviews were audio recorded, transcribed verbatim and transcripts were analysed using reflexive thematic analysis. Results: Three overarching themes were identified: (1) ESD as a post-stroke recovery tool, (2) desire to recover quickly, (3) psychosocial impact and support. Stroke survivors were uncertain about what to expect when they first entered the service, however, their experience of ESD exceeded their expectations and increased their engagement with the service. Stroke survivors especially valued the goal-oriented approach the team adopted. Rehabilitation at home was perceived as positive and practical, encouraging independence within real-life contexts. Psycho-social support played an important role in the stroke survivors’ rehabilitation. Conclusions: Ensuring stroke survivors are fully informed about ESD and what to expect, optimises engagement with the services, improves experience and could enhance outcomes.IMPLICATIONS FOR REHABILITATION Informing stroke survivors about what to expect from ESD services could optimise engagement and improve their experience. The provision of personalised and target focussed therapy at home improves stroke survivors’ experience and could potentially accelerate recovery. Preparing stroke survivors early for discharge from ESD can reduce anxiety and enhance engagement with the service

Evaluating stroke early supported discharge using cost-consequence analysis

Purpose: To evaluate different stroke Early Supported Discharge (ESD) services in different geographical settings using cost-consequence analysis (CCA), which presents information about costs and outcomes in the form of a balance sheet. ESD is a multidisciplinary service intervention that facilitates discharge from hospital and includes delivery of stroke specialist rehabilitation at home.Materials and methods: Data were collected from six purposively sampled services across the Midlands, East and North of England. All services, rural and urban, provided stroke rehabilitation to patients in their own homes. Cost data included direct and overhead costs of service provision and staff travel. Consequence data included service level adherence to an expert consensus regarding the specification of ESD service provision.Results: We observed that the most rural services had the highest service cost per patient. The main costs associated with running each ESD service were staff costs. In terms of the consequences, there was a positive association between service costs per patient and greater adherence to meeting the evidence-based ESD service specification agreed by an expert panel.Conclusions: This study found that rural services were associated with higher costs per patient, which in turn were associated with greater adherence to the expert consensus regarding ESD service specification. We suggest additional resources and costs are required in order for rural services to meet evidence-based criteria.Study registration: http://www.isrctn.com/ISRCTN1556816

Large-scale implementation of stroke early supported discharge: the WISE realist mixed-methods study

Background: In England, the provision of early supported discharge is recommended as part of an evidence-based stroke care pathway. Objectives: To investigate the effectiveness of early supported discharge services when implemented at scale in practice and to understand how the context within which these services operate influences their implementation and effectiveness. Design: A mixed-methods study using a realist evaluation approach and two interlinking work packages was undertaken. Three programme theories were tested to investigate the adoption of evidence-based core components, differences in urban and rural settings, and communication processes. Setting and interventions: Early supported discharge services across a large geographical area of England, covering the West and East Midlands, the East of England and the North of England. Participants: Work package 1: historical prospective patient data from the Sentinel Stroke National Audit Programme collected by early supported discharge and hospital teams. Work package 2: NHS staff (n = 117) and patients (n = 30) from six purposely selected early supported discharge services. Data and main outcome: Work package 1: a 17-item early supported discharge consensus score measured the adherence to evidence-based core components defined in an international consensus document. The effectiveness of early supported discharge was measured with process and patient outcomes and costs. Work package 2: semistructured interviews and focus groups with NHS staff and patients were undertaken to investigate the contextual determinants of early supported discharge effectiveness. Results: A variety of early supported discharge service models had been adopted, as reflected by the variability in the early supported discharge consensus score. A one-unit increase in early supported discharge consensus score was significantly associated with a more responsive early supported discharge service and increased treatment intensity. There was no association with stroke survivor outcome. Patients who received early supported discharge in their stroke care pathway spent, on average, 1 day longer in hospital than those who did not receive early supported discharge. The most rural services had the highest service costs per patient. NHS staff identified core evidence-based components (e.g. eligibility criteria, co-ordinated multidisciplinary team and regular weekly multidisciplinary team meetings) as central to the effectiveness of early supported discharge. Mechanisms thought to streamline discharge and help teams to meet their responsiveness targets included having access to a social worker and the quality of communications and transitions across services. The role of rehabilitation assistants and an interdisciplinary approach were facilitators of delivering an intensive service. The rurality of early supported discharge services, especially when coupled with capacity issues and increased travel times to visit patients, could influence the intensity of rehabilitation provision and teams’ flexibility to adjust to patients’ needs. This required organising multidisciplinary teams and meetings around the local geography. Findings also highlighted the importance of good leadership and communication. Early supported discharge staff highlighted the need for collaborative and trusting relationships with patients and carers and stroke unit staff, as well as across the wider stroke care pathway. Limitations: Work package 1: possible influence of unobserved variables and we were unable to determine the effect of early supported discharge on patient outcomes. Work package 2: the pragmatic approach led to ‘theoretical nuggets’ rather than an overarching higher-level theory. Conclusions: The realist evaluation methodology allowed us to address the complexity of early supported discharge delivery in real-world settings. The findings highlighted the importance of context and contextual features and mechanisms that need to be either addressed or capitalised on to improve effectiveness. Trial registration: Current Controlled Trials ISRCTN15568163. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 22. See the NIHR Journals Library website for further project information