The HEADS: UP Development Study: Working with Key Stakeholders to Adapt a Mindfulness-Based Stress Reduction Course for People with Anxiety and Depression after Stroke.

BACKGROUND: Following stroke, rates of mood disorder are and remain high at five years (anxiety 34.4%; depression 23%). Structured mindfulness-based stress reduction (MBSR) courses are effective in a range of health conditions, but stroke survivors find adherence challenging. We aimed to adapt a standard MBSR course specifically for people affected by stroke. METHODS: We recruited stroke survivors and family members with symptoms of anxiety and/or depression to take part in a co-development study comprising two rounds of MBSR 'taster' sessions, followed by focus groups in which views were sought on the practices sampled. Data were collected in October 2017 and May 2018 and were analysed using framework analysis, informed adaptations to mindfulness materials and delivery. RESULTS: Twenty-eight stroke survivors and seven family members participated. Nineteen (76%) stroke survivors had anxiety; 15 (60%) had depression. Five (71.4%) family members reported anxiety; n = 4 (57.1%) depression. Thirty participants attended the first round of taster sessions and focus groups; twenty (66%) the second and three (10%) were unable to attend either round. Framework analysis informed adaptations to course delivery, practices, and materials, ultimately resulting in a stroke-specific MBSR course, HEADS: UP (Helping Ease Anxiety and Depression after Stroke). CONCLUSIONS: HEADS: UP may provide a feasible, appropriate, and meaningful self-management intervention to help alleviate symptoms of mood disorder.

Online Mindfulness with Care Partnerships Experiencing Anxiety and Depression Symptoms after Stroke: Mixed Methods Case Study Research.

Purpose: To investigate the experience and outcomes for care partnerships (e.g., spouses, caregivers) who have post-stroke anxiety and/or depression symptoms and used an online mindfulness-based intervention (MBI) together. Design: Explanatory sequential mixed methods case study research. Methods: 5 care partnerships (10 participants) received online MBI, and data was collected in weeks 0, 4, and 8. Data collection involved the Hospital Anxiety Depression Scale, the Mutuality Scale, the Mindful Attention Awareness Scale, and post-intervention interviews. Clinical effectiveness was evaluated using minimal clinically important difference (MCID). Findings: Participants improved mindfulness (80%) and mutuality (30%). MCID was achieved for anxiety symptoms (50%) and depression symptoms (20%). IPA found evidence of conflicting and contradictory experiences so dialectical tension was used to articulate the continuum of perspectives and themes produced in the analysis. Conclusion: Care partnerships using online MBIs can experience improvements in mindfulness, mutuality, anxiety symptoms, and depression symptoms. The findings are complex but show the potential value of online MBI for some care partnerships living with stroke.

A systematic review and meta-analysis exploring the efficacy of mindfulness-based interventions on quality of life in people with multiple sclerosis.

BACKGROUND: Quality of life (QoL) is commonly impaired among people with multiple sclerosis (PwMS). The aim of this study was to evaluate via meta-analysis the efficacy of Mindfulness-based interventions (MBIs) for improving QoL in PwMS. METHODS: Eligible randomized controlled trials (RCTs) were identified via searching six major electronic databases (MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, AMED, and PsycINFO) in April 2022. The primary outcome was QoL. Study quality was determined using the Cochrane Collaboration risk of bias tool. Meta-analysis using a random effects model was undertaken. Effect sizes are reported as Standardized Mean Difference (SMD). Prospero ID: 139835. RESULTS: From a total of 1312 individual studies, 14 RCTs were eligible for inclusion in the meta-analysis, total participant n = 937. Most studies included PwMS who remained ambulatory. Cognitively impaired PwMS were largely excluded. Comorbidities were inconsistently reported. Most MBIs were delivered face-to face in group format, but five were online. Eight studies (n = 8) measured MS-specific QoL. In meta-analysis, overall effect size (SMD) for any QoL measure (n = 14) was 0.40 (0.18-0.61), p = 0.0003, I2 = 52%. SMD for MS-specific QoL measures (n = 8) was 0.39 (0.21-0.57), p < 0.0001, I2 = 0%. MBI effect was largest on subscale measures of mental QoL (n = 8), SMD 0.70 (0.33-1.06), p = 0.0002, I2 = 63%. Adverse events were infrequently reported. CONCLUSIONS: MBIs effectively improve QoL in PwMS. The greatest benefits are on mental health-related QoL. However, more research is needed to characterize optimal formatting, mechanisms of action, and effects in PwMS with more diverse social, educational, and clinical backgrounds.

Mindfulness-based interventions for people with multiple sclerosis: a systematic review and meta-aggregation of qualitative research studies.

PURPOSE: Mindfulness-based interventions (MBIs) are effective treatments for stress, anxiety, and depression in PwMS. However, low adherence and high attrition may limit effectiveness. Qualitative research can provide important insights into MBI acceptability, accessibility, and implementation. This systematic review and meta-aggregation evaluated qualitative research findings on the use of MBIs for PwMS. METHODS: Systematic searches were undertaken in six major electronic databases. Studies using qualitative or mixed methods were included. Two reviewers screened, data extracted, and critically appraised studies. Meta-aggregation was performed following the Joanna Briggs Institute approach, extracting findings, developing categories, and synthesizing findings. RESULTS: Six eligible papers, including 136 PwMS were included in meta-aggregation. 136 findings were extracted, grouped into 17 categories, with four synthesized findings: (1) "accessing mindfulness," (2) "a sense of belonging," (3) "experiencing mindfulness," and (4) "making mindfulness more relevant and sustainable for PwMS." CONCLUSIONS: MBIs for PwMS need to take into consideration disability which can limit accessibility. Online MBIs (synchronous and asynchronous) appear acceptable alternatives to traditional face-to-face courses. However, PwMS benefit from shared (mindful) experiencing and highlight MBI instructors as crucial in helping them understand and practice mindfulness. Involving PwMS in design, delivery, and iterative refinement would make MBIs more relevant to those taking part.IMPLICATIONS FOR REHABILITATIONBoth face-to-face and online Mindfulness-based interventions (MBIs) appear acceptable to PwMS and, ideally, people should be offered a choice in training modality.PwMS derive benefit from undertaking MBIs with their peers, where a sense of camaraderie and belonging develop through shared (mindful) experiences.Instructors delivering MBIs for PwMS should be knowledgeable about the condition; participants describe how the instructor has a key role in helping them practice mindfulness effectively in the context of unpleasant experiences associated with MS.MBIs tailored for PwMS should include a pre-course orientation session, clearly articulate how mindfulness practices can help with MS, provide well-organized course materials in large font size, and deliver individual mindfulness practices flexibly depending on participant need.

Effects of Mindfulness-based interventions on physical symptoms in people with multiple sclerosis - a systematic review and meta-analysis.

BACKGROUND: Physical wellbeing is commonly impaired in people with multiple sclerosis (PwMS). This study aims to update our previous systematic review (2014) and conduct a meta-analysis on the efficacy of Mindfulness-based interventions (MBIs) for improving physical symptoms in PwMS. METHODS: In November 2017 we carried out systematic searches for eligible randomised controlled trials (RCTs) in seven major databases, updating our search in July 2018. We used medical subject headings and key words. Two independent reviewers used pre-defined criteria to screen, data extract, quality appraise, and analyse studies. The Cochrane Collaboration risk of bias tool was used to determine study quality. Physical wellbeing was the main outcome of interest. We used the random effects model for meta-analysis, reporting effect sizes as Standardised Mean Difference (SMD). This study is registered with PROSPERO: CRD42018093171. RESULTS: We identified 10 RCTs as eligible for inclusion in the systematic review (including 678 PwMS), whilst seven RCTs (555 PwMS) had data that could be used in our meta-analyses. In general, comorbidity, disability, ethnicity and socio-economic status were poorly reported. MBIs included manualised and tailored interventions, treatment duration 6-9 weeks, delivered face-to-face and online in groups and also individually. For fatigue, against any comparator SMD was 0.24 (0.08 - 0.41), I2=0%; against active comparators only, SMD was 0.10 (-0.14 - 0.34), I2=0%. For pain SMD was 0.16 (-0.46 - 0.79), I2=77%. Three adverse events occurred across all studies. CONCLUSIONS: MBIs appear to be an effective treatment for fatigue in PwMS. The optimal MBI in this context remains unclear. Further research into MBI optimisation, cost- and comparative-effectiveness is required.

Mindfulness-Based Interventions for Young Offenders: a Scoping Review.

Youth offending is a problem worldwide. Young people in the criminal justice system have frequently experienced adverse childhood circumstances, mental health problems, difficulties regulating emotions and poor quality of life. Mindfulness-based interventions can help people manage problems resulting from these experiences, but their usefulness for youth offending populations is not clear. This review evaluated existing evidence for mindfulness-based interventions among such populations. To be included, each study used an intervention with at least one of the three core components of mindfulness-based stress reduction (breath awareness, body awareness, mindful movement) that was delivered to young people in prison or community rehabilitation programs. No restrictions were placed on methods used. Thirteen studies were included: three randomized controlled trials, one controlled trial, three pre-post study designs, three mixed-methods approaches and three qualitative studies. Pooled numbers (n = 842) comprised 99% males aged between 14 and 23. Interventions varied so it was not possible to identify an optimal approach in terms of content, dose or intensity. Studies found some improvement in various measures of mental health, self-regulation, problematic behaviour, substance use, quality of life and criminal propensity. In those studies measuring mindfulness, changes did not reach statistical significance. Qualitative studies reported participants feeling less stressed, better able to concentrate, manage emotions and behaviour, improved social skills and that the interventions were acceptable. Generally low study quality limits the generalizability of these findings. Greater clarity on intervention components and robust mixed-methods evaluation would improve clarity of reporting and better guide future youth offending prevention programs.

Acceptability of mindfulness from the perspective of stroke survivors and caregivers: a qualitative study.

BACKGROUND: Depression is very common among stroke survivors with estimated prevalence rates of approximately 33% among stroke survivors, but treatment options are limited. Mindfulness-Based Stress Reduction (MBSR) is an effective treatment for depression generally, but benefits in stroke patients are unclear. The aim of this study was to determine the feasibility of delivering MBSR to stroke survivors and their caregivers in the community. We conducted a study to gain views of MBSR as a potential treatment option among stroke survivors and their caregivers in the community. METHODS: Participants were recruited from an urban community in Scotland (UK) using newspaper adverts, social media and support groups run by health charities. A 2-h MBSR taster session was delivered by two experienced mindfulness instructors, followed by focus group sessions with all participants on their user experience and suggestions for MBSR modifications for stroke survivors. The focus group sessions were audio recorded and transcribed verbatim. Transcript data were analysed thematically using the framework approach. RESULTS: The study sample consisted of 28 participants (16 females); there were 21 stroke survivors (11 females) and 7 caregivers (5 females). The median age for participants was 60 years.Most participants described the MBSR taster session as a positive experience. The main challenge reported was trying to maintain focus and concentration throughout the MBSR session. Some participants expressed reservations about the duration of standard mindfulness course sessions, suggesting a preference for shorter sessions. The potential for achieving better control over negative thoughts and emotions was viewed as a potential facilitator for future MBSR participation. Participants suggested having an orientation session prior to starting an 8-week course as a means of developing familiarity with the MBSR instructor and other participants. CONCLUSION: It was feasible to recruit 21 stroke survivors and 7 caregivers for MBSR taster sessions in the community. A shorter MBSR session and an orientation session prior to the full course are suggestions for potential MBSR modifications for stroke survivors, which needs further research and evaluation.

The effectiveness of transcutaneous tibial nerve stimulation (TTNS) for adults with overactive bladder syndrome: A systematic review.

AIMS: To evaluate effectiveness of transcutaneous tibial nerve stimulation (TTNS) for treating adults with overactive bladder (OAB) of idiopathic or neurogenic origin, using a systematic review of the literature. METHODS: Systematic searches of four databases were undertaken between 1980 and 2017. Included studies investigated effects of TTNS on OAB. Study selection, data extraction, quality appraisal was performed by two independent reviewers. Narrative analysis was undertaken where meta-analysis was not possible due to study heterogeneity. Meta-analysis of RCTs was performed using a fixed effects model. RESULTS: Ten RCTs and three prospective cohort studies involving 629 participants were reviewed. Meta-analysis of two trials comparing TTNS with sham showed mean reduction in total ICIQ Urinary Incontinence Short Form (ICIQ-UI SF) associated with TTNS of -3.79 (95% CI -5.82, -1.76; P = 0.0003, I2 = 25%). Narrative review showed TTNS and antimuscarinic treatment were equally effective (four trials), TTNS provided greater benefit for OAB symptoms than behavioral interventions (two trials), tibial nerve, and sacral foramen stimulation were equally effective but combined stimulation was most effective (one trial). Significant improvements in OAB symptoms were reported by 48-93% participants and UI cure rates of 25-45%. No adverse events were reported. CONCLUSIONS: Limited evidence is provided that TTNS is an effective, safe intervention for idiopathic OAB in adults and may be of benefit in those with neurogenic OAB. Further studies are essential to confirm these results as well as to determine efficacy and associated costs for specific patient groups, most effective stimulation dosage, duration of effect, and stimulation regimes for longer-term maintenance.

Yoga for stroke rehabilitation.

BACKGROUND: Stroke is a major health issue and cause of long-term disability and has a major emotional and socioeconomic impact. There is a need to explore options for long-term sustainable interventions that support stroke survivors to engage in meaningful activities to address life challenges after stroke. Rehabilitation focuses on recovery of function and cognition to the maximum level achievable, and may include a wide range of complementary strategies including yoga.Yoga is a mind-body practice that originated in India, and which has become increasingly widespread in the Western world. Recent evidence highlights the positive effects of yoga for people with a range of physical and psychological health conditions. A recent non-Cochrane systematic review concluded that yoga can be used as self-administered practice in stroke rehabilitation. OBJECTIVES: To assess the effectiveness of yoga, as a stroke rehabilitation intervention, on recovery of function and quality of life (QoL). SEARCH METHODS: We searched the Cochrane Stroke Group Trials Register (last searched July 2017), Cochrane Central Register of Controlled Trials (CENTRAL) (last searched July 2017), MEDLINE (to July 2017), Embase (to July 2017), CINAHL (to July 2017), AMED (to July 2017), PsycINFO (to July 2017), LILACS (to July 2017), SciELO (to July 2017), IndMED (to July 2017), OTseeker (to July 2017) and PEDro (to July 2017). We also searched four trials registers, and one conference abstracts database. We screened reference lists of relevant publications and contacted authors for additional information. SELECTION CRITERIA: We included randomised controlled trials (RCTs) that compared yoga with a waiting-list control or no intervention control in stroke survivors. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data from the included studies. We performed all analyses using Review Manager (RevMan). One review author entered the data into RevMan; another checked the entries. We discussed disagreements with a third review author until consensus was reached. We used the Cochrane 'Risk of bias' tool. Where we considered studies to be sufficiently similar, we conducted a meta-analysis by pooling the appropriate data. For outcomes for which it was inappropriate or impossible to pool quantitatively, we conducted a descriptive analysis and provided a narrative summary. MAIN RESULTS: We included two RCTs involving 72 participants. Sixty-nine participants were included in one meta-analysis (balance). Both trials assessed QoL, along with secondary outcomes measures relating to movement and psychological outcomes; one also measured disability.In one study the Stroke Impact Scale was used to measure QoL across six domains, at baseline and post-intervention. The effect of yoga on five domains (physical, emotion, communication, social participation, stroke recovery) was not significant; however, the effect of yoga on the memory domain was significant (mean difference (MD) 15.30, 95% confidence interval (CI) 1.29 to 29.31, P = 0.03), the evidence for this finding was very low grade. In the second study, QoL was assessed using the Stroke-Specifc QoL Scale; no significant effect was found.Secondary outcomes included movement, strength and endurance, and psychological variables, pain, and disability.Balance was measured in both studies using the Berg Balance Scale; the effect of intervention was not significant (MD 2.38, 95% CI -1.41 to 6.17, P = 0.22). Sensititivy analysis did not alter the direction of effect. One study measured balance self-efficacy, using the Activities-specific Balance Confidence Scale (MD 10.60, 95% CI -7.08,= to 28.28, P = 0.24); the effect of intervention was not significant; the evidence for this finding was very low grade.One study measured gait using the Comfortable Speed Gait Test (MD 1.32, 95% CI -1.35 to 3.99, P = 0.33), and motor function using the Motor Assessment Scale (MD -4.00, 95% CI -12.42 to 4.42, P = 0.35); no significant effect was found based on very low-grade evidence.One study measured disability using the modified Rankin Scale (mRS) but reported only whether participants were independent or dependent. No significant effect was found: (odds ratio (OR) 2.08, 95% CI 0.50 to 8.60, P = 0.31); the evidence for this finding was very low grade.Anxiety and depression were measured in one study. Three measures were used: the Geriatric Depression Scale-Short Form (GCDS15), and two forms of State Trait Anxiety Inventory (STAI, Form Y) to measure state anxiety (i.e. anxiety experienced in response to stressful situations) and trait anxiety (i.e. anxiety associated with chronic psychological disorders). No significant effect was found for depression (GDS15, MD -2.10, 95% CI -4.70 to 0.50, P = 0.11) or for trait anxiety (STAI-Y2, MD -6.70, 95% CI -15.35 to 1.95, P = 0.13), based on very low-grade evidence. However, a significant effect was found for state anxiety: STAI-Y1 (MD -8.40, 95% CI -16.74 to -0.06, P = 0.05); the evidence for this finding was very low grade.No adverse events were reported.Quality of the evidenceWe assessed the quality of the evidence using GRADE. Overall, the quality of the evidence was very low, due to the small number of trials included in the review both of which were judged to be at high risk of bias, particularly in relation to incompleteness of data and selective reporting, and especially regarding the representative nature of the sample in one study. AUTHORS' CONCLUSIONS: Yoga has the potential for being included as part of patient-centred stroke rehabilitation. However, this review has identified insufficient information to confirm or refute the effectiveness or safety of yoga as a stroke rehabilitation treatment. Further large-scale methodologically robust trials are required to establish the effectiveness of yoga as a stroke rehabilitation treatment.

Mindfulness-based interventions in epilepsy: a systematic review.

BACKGROUND: Mindfulness based interventions (MBIs) are increasingly used to help patients cope with physical and mental long-term conditions (LTCs). Epilepsy is associated with a range of mental and physical comorbidities that have a detrimental effect on quality of life (QOL), but it is not clear whether MBIs can help. We systematically reviewed the literature to determine the effectiveness of MBIs in people with epilepsy. METHODS: Medline, Cochrane Central Register of Controlled Trials, EMBASE, CINAHL, Allied and Complimentary Medicine Database, and PsychInfo were searched in March 2016. These databases were searched using a combination of subject headings where available and keywords in the title and abstracts. We also searched the reference lists of related reviews. Study quality was assessed using the Cochrane Collaboration risk of bias tool. RESULTS: Three randomised controlled trials (RCTs) with a total of 231 participants were included. The interventions were tested in the USA (n = 171) and China (Hong Kong) (n = 60). Significant improvements were reported in depression symptoms, quality of life, anxiety, and depression knowledge and skills. Two of the included studies were assessed as being at unclear/high risk of bias - with randomisation and allocation procedures, as well as adverse events and reasons for drop-outs poorly reported. There was no reporting on intervention costs/benefits or how they affected health service utilisation. CONCLUSION: This systematic review found limited evidence for the effectiveness of MBIs in epilepsy, however preliminary evidence suggests it may lead to some improvement in anxiety, depression and quality of life. Further trials with larger sample sizes, active control groups and longer follow-ups are needed before the evidence for MBIs in epilepsy can be conclusively determined.

The meaning and perceived value of mind-body practices for people living with HIV: a qualitative synthesis.

Mind-body practices (MBPs) are a subset of complementary medicine that represents a selection of self-care activities that may promote the health of people living with HIV (PLWH). No synthesis of qualitative research in this context, which might inform service provision and research priorities, has yet been published. A systematic search of electronic databases was conducted, identifying papers exploring the experience of MBPs in PLWH. During thematic synthesis, all text under the headings "results" or "findings" was scanned line by line, and discrete, meaningful units of text were extracted as data items. Categories were identified, and second- and third-order constructs were developed. Concerns related to control and self-management appeared in the convergence of participants' worlds with the medical world and in being pragmatic about selecting MBPs and goal setting. The themes developed suggest a desire for more holistic and person-centered care, arguably marginalized as a result of effective antiretroviral therapy.

Mindfulness based interventions in multiple sclerosis--a systematic review.

BACKGROUND: Multiple sclerosis (MS) is a stressful condition; depression, anxiety, pain and fatigue are all common problems. Mindfulness based interventions (MBIs) mitigate stress and prevent relapse in depression and are increasingly being used in healthcare. However, there are currently no systematic reviews of MBIs in people with MS. This review aims to evaluate the effectiveness of MBIs in people with MS. METHODS: Systematic searches were carried out in seven major databases, using both subject headings and key words. Papers were screened, data extracted, quality appraised, and analysed by two reviewers independently, using predefined criteria. Study quality was assessed using the Cochrane Collaboration risk of bias tool. Perceived stress was the primary outcome. Secondary outcomes include mental health, physical health, quality of life, and health service utilisation. Statistical meta-analysis was not possible. Disagreements were adjudicated by a third party reviewer. RESULTS: Three studies (n = 183 participants) were included in the final analysis. The studies were undertaken in Wales (n = 16, randomised controlled trial - (RCT)), Switzerland (n = 150, RCT), and the United States (n = 17, controlled trial). 146 (80%) participants were female; mean age (SD) was 48.6 (9.4) years. Relapsing remitting MS was the main diagnostic category (n = 123, 67%); 43 (26%) had secondary progressive disease; and the remainder were unspecified. MBIs lasted 6-8 weeks; attrition rates were variable (5-43%); all employed pre- post- measures; two had longer follow up; one at 3, and one at 6 months. Socio-economic status of participants was not made explicit; health service utilisation and costs were not reported. No study reported on perceived stress. All studies reported quality of life (QOL), mental health (anxiety and depression), physical (fatigue, standing balance, pain), and psychosocial measures. Statistically significant beneficial effects relating to QOL, mental health, and selected physical health measures were sustained at 3- and 6- month follow up. CONCLUSION: From the limited data available, MBIs may benefit some MS patients in terms of QOL, mental health, and some physical health measures. Further studies are needed to clarify how MBIs might best serve the MS population.

A systematic review of the benefits of mindfulness-based interventions following transient ischemic attack and stroke.

BACKGROUND: Recent epidemiological studies have demonstrated an association between perceived psychological stress and ischemic stroke. A feature of stroke is recurrence; 30-40% within five-years following first transient ischemic attack/stroke. Equipping patients with skills and coping strategies to help reduce or manage perceived psychological stress may represent an important secondary prevention intervention. Mindfulness-based interventions are structured, group-based self-management programmes with potential to help people with long-term conditions cope better with physical, psychological, or emotional distress. Review evidence suggests significant benefits across a range of physical and mental health problems. However, we could find no evidence synthesis relating specifically to the benefits of mindfulness-based interventions following transient ischemic attack/stroke. AIM: The review aims to evaluate the benefits of mindfulness-based interventions following transient ischemic attack/stroke. METHODS: Six major databases were searched using subject headings and key words. Papers were screened using review-specific criteria. Critical appraisal and data extraction were conducted independently by two reviewers. Statistical meta-analysis was not possible; therefore findings are presented in narrative form. RESULTS: Four studies involving 160 participants were reviewed. Three papers reported mindfulness-based interventions delivered to groups; one paper reported a mindfulness-based intervention which was delivered one to one. The results demonstrate a positive trend in favor of the benefits of mindfulness-based interventions across a range of psychological, physiological, and psychosocial outcomes including anxiety, depression, mental fatigue, blood pressure, perceived health, and quality of life. No evidence of harm was found. CONCLUSION: Following transient ischemic attack/stroke, people may derive a range of benefits from mindfulness-based interventions; however, further methodologically robust trials are required.

Informal carers' experience of caring for stroke survivors.

BACKGROUND: Stroke is the third most common cause of death in industrialized countries and a major cause of adult disability. However, the burden of caring for stroke survivors usually rests with family members who have neither chosen nor volunteered for the role of 'carer'. AIMS: This paper reports on a study which aimed to describe the experience of caring for a stroke survivor at one year after stroke in Scotland. STUDY DESIGN: Semi-structured, taped interviews were conducted with 90 carers of stroke survivors one year after stroke and the data analysed using NUD*IST. The interviews were part of a larger study, which included the administration of a range of valid and reliable multidimensional instruments to both carers and stroke survivors. The interview prompt schedule had been developed and tested in a previous study. FINDINGS: Although a medical emergency, stroke was not always diagnosed or treated as such by either the public or general practitioners. Initially most carers found that they lacked the knowledge and skills to care for the stroke survivor at home and so they had to learn how to obtain the information and assistance required. Carers had to adapt to the changes that stroke effected in the stroke survivor and seek alternative ways of securing the resources they needed for managing their lives. They thought that they had not been prepared adequately for the caring role or assessed satisfactorily in terms of whether they could manage given their skill level, age and/or health status. CONCLUSIONS: A public health campaign to educate and inform that stroke is a medical emergency is required if stroke disability is to be minimized. The use of new technologies should be considered in facilitating carers' learning how to care. There is a need to test alternative models of stroke follow-up in multi-centre studies that are holistic and place the carer-stroke survivor at the centre of care.