Priorities for developing stroke care in Ireland from the perspectives of stroke survivors, family carers and professionals involved in stroke care: A mixed methods study.

INTRODUCTION: Increasing numbers of people are living with stroke, due to population ageing and improved survival, leading to a need for evidence to inform future policy decision-making. This study aimed to engage with stakeholders in Ireland to identify priorities for stroke services development. METHODS: A sequential mixed methods design was used. Phase 1 (qualitative) was exploratory, involving initial priority gathering via an online qualitative survey and interviews, with stroke survivors, family/main carers, and professionals working in stroke care. Framework analysis was used to generate a long-list of improvements to stroke services. Phase 2 involved a quantitative survey, where stakeholders selected five priority improvements from the long-list. Results were discussed in a stakeholder meeting. RESULTS: In-depth interviews were completed with 18 survivors, 13 carers and 8 professionals, while 80 professionals took part in a qualitative survey (phase 1). Priority areas of care were identified and a long-list of 45 priority improvements was generated. In phase 2, 34 survivors, 19 family carers and 42 professionals completed a survey. The highest priority improvements (selected by >20% of respondents) were access to specialist neuro-rehabilitation, ongoing support for life after stroke, recruitment/retention of specialist staff, improved information and support for health system navigation, and access to specialist acute care. Stroke survivors/carers prioritised exploring ways to improve access for strokes with atypical presentation, while professionals prioritised specialist inpatient rehabilitation and early supported discharge. Neither group prioritised stroke prevention. Based on discussions in the stakeholder meeting (n = 12), it was decided that support for mental health should also be included as a priority. DISCUSSION: The development of stroke services benefits from exploring the priorities of those receiving and delivering stroke care. Findings emphasise the need for equitable access to high quality adequately-staffed services, particularly post-discharge, that are easy to navigate, with good communication, and effective information provision.

Delivery of acute ischaemic stroke treatments in the European region in 2019 and 2020.

INTRODUCTION: We assessed best available data on access and delivery of acute stroke unit (SU) care, intravenous thrombolysis (IVT) and endovascular treatment (EVT) in the European region in 2019 and 2020. PATIENTS AND METHODS: We compared national data per number of inhabitants and per 100 annual incident first-ever ischaemic strokes (AIIS) in 46 countries. Population estimates and ischaemic stroke incidence were based on United Nations data and the Global Burden of Disease Report 2019, respectively. RESULTS: The estimated mean number of acute SUs in 2019 was 3.68 (95% CI: 2.90-4.45) per one million inhabitants (MIH) with 7/44 countries having less than one SU per one MIH. The estimated mean annual number of IVTs was 21.03 (95% CI: 15.63-26.43) per 100,000 and 17.14% (95% CI: 12.98-21.30) of the AIIS in 2019, with highest country rates at 79.19 and 52.66%, respectively, and 15 countries delivering less than 10 IVT per 100,000. The estimated mean annual number of EVTs in 2019 was 7.87 (95% CI: 5.96-9.77) per 100,000 and 6.91% (95% CI: 5.15-8.67) of AIIS, with 11 countries delivering less than 1.5 EVT per 100,000. Rates of SUs, IVT and EVT were stable in 2020. There was an increase in mean rates of SUs, IVT and EVT compared to similar data from 2016. CONCLUSION: Although there was an increase in reperfusion treatment rates in many countries between 2016 and 2019, this was halted in 2020. There are persistent major inequalities in acute stroke treatment in the European region. Tailored strategies directed to the most vulnerable regions should be prioritised.

Identifying priority interventions for stroke in Ireland through stakeholder engagement to inform population-based modelling: a mixed methods protocol.

Introduction  Improvements in stroke survival have resulted in increasing numbers of people living with stroke, and with a rapidly evolving evidence-base for stroke prevention and management, there is a need for robust data and evidence to inform future policy decision-making. Population-based modelling and economic evaluation of alternative policy options is a useful tool to support decision making. However, this process must be aligned to key stakeholder priorities. The aim of the proposed research is to engage with stakeholders in Ireland to identify their priorities for the development of stroke prevention and management strategies and policies. Methods  The design is iterative, based on mixed methods. Phase 1 involves a qualitative approach for initial priority gathering, based on an open-ended online survey (target sample: 100-120) and interviews (target sample: 34-40). Stakeholders will include: 1) stroke survivors and family member/main carers, 2) healthcare professionals (HCPs) providing stroke care and 3) people working in stroke research, policy and advocacy. These data will be analysed qualitatively, with the aim of identifying a long-list of specific interventions. Phase 2 involves an interim priority-setting exercise, based on a quantitative online survey. Participants will be asked to rank the interventions on the initial long-list. These rankings will be used to inform a final priority-setting workshop (Phase 3), where a small stakeholder group will decide on the final set of priorities. Discussion  The rich and detailed quantitative and qualitative data, based on the views of diverse stakeholders, will be directly relevant to policy makers and service planners involved in developing and improving stroke care in Ireland. The information provided will also be essential to inform the Scenario and Intervention Modelling in Ireland for Stroke (SIMI-Stroke) project, a population-based economic and epidemiological modelling study aimed at identifying cost-effective interventions for stroke across the prevention, acute and post-acute care continuum.

Barriers and facilitators associated with return to work after stroke: a qualitative meta-synthesis.

PURPOSE: To enhance the employment outcomes of individuals who experience a stroke, it is essential to understand the factors that determine successful return to work. The aim of this systematic review was to examine barriers to and facilitators of return to work after stroke from the perspective of people with stroke through the process of a qualitative meta-synthesis. METHODS: A systematic literature search was conducted. Studies that employed qualitative methods to explore the experiences of individuals with stroke around return to work after stroke were included. The methodological quality of the studies was assessed by two independent reviewers. Overarching themes, concepts and interpretations were extracted from each individual study, compared and meta-synthesized. RESULTS: Fifteen studies were included and the overall methodological quality of the studies was good. Four broad themes emerged as factors associated with return to work after stroke. These included (i) the nature of the effects of stroke, (ii) the preparatory environment, (iii) personal coping strategies and internal challenges and (iv) the meaning of work. CONCLUSION: Return to work after stroke is a complex process which can be facilitated or impeded by organizational, social or personal factors, as well as accessibility to appropriate services. Implications for Rehabilitation Following a period of dedicated inpatient rehabilitation, there is a need to integrate community-support services to optimize return to work among stroke survivors. A dedicated community stroke support liaison officer may help to facilitate the transition between the hospital and the community and workplace environment. Education provided by healthcare professionals is necessary in the community and the workplace to ensure that family, friends and employers are aware of the impairments, activity limitations and participation restrictions of the stroke survivor.

A comparison of service organisation and guideline compliance between two adjacent European health services.

INTRODUCTION: Outcomes in stroke patients are improved by a co-ordinated organisation of stroke services and provision of evidence-based care. We studied the organisation of care and application of guidelines in two neighbouring health care systems with similar characteristics. METHODS: Organisational elements of the 2015 National Stroke Audit (NSA) from the Republic of Ireland (ROI) were compared with the Sentinel Stroke National Audit Programme (SSNAP) in Northern Ireland (NI) and the United Kingdom (UK). Compliance was compared with UK and European guidelines. RESULTS: Twenty-one of 28 ROI hospitals (78%) reported having a stroke unit (SU) compared with all 10 in NI. Average SU size was smaller in ROI (6 beds vs. 15 beds) and bed availability per head of population was lower (1:30,633 vs. 1:12,037 p < 0.0001 Chi Sq). Fifty-four percent of ROI patients were admitted to SU care compared with 96% of UK patients (p < 0.0001). Twenty-four-hour physiological monitoring was available in 54% of ROI SUs compared to 91% of UK units (p < 0.0001). There was no significant difference between ROI and NI in access to senior specialist physicians or nurses or in SU nurse staffing (3.9/10 beds weekday mornings) but there was a higher proportion of trained nurses in ROI units (2.9/10 beds vs. 2.3/10 beds (p = 0.02 Chi Sq). CONCLUSION: Whilst the majority of hospitals in both jurisdictions met key criteria for organised stroke care the small size and underdevelopment of the ROI units meant a substantial proportion of patients were unable to access this specialised care.

Factors associated with community reintegration in the first year after stroke: a qualitative meta-synthesis.

PURPOSE: Although acute stroke care has improved survival, many individuals report dissatisfaction with community reintegration after stroke. The aim of this qualitative meta-synthesis was to examine the barriers and facilitators of community reintegration in the first year after stroke from the perspective of people with stroke. METHODS: A systematic literature search was conducted. Papers that used qualitative methods to explore the experiences of individuals with stroke around community reintegration in the first year after stroke were included. Two reviewers independently assessed the methodological quality of papers. Themes, concepts and interpretations were extracted from each study, compared and meta-synthesised. RESULTS: From the 18 included qualitative studies four themes related to community reintegration in the first year after stroke were identified: (i) the primary effects of stroke, (ii) personal factors, (iii) social factors and (iv) relationships with professionals. CONCLUSIONS: This review suggests that an individual's perseverance, adaptability and ability to overcome emotional challenges can facilitate reintegration into the community despite persisting effects of their stroke. Appropriate support from family, friends, the broader community and healthcare professionals is important. Therapeutic activities should relate to meaningful activities and should be tailored to the individual stroke survivor. IMPLICATIONS FOR REHABILITATION: Stroke survivors feel that rehabilitation in familiar environments and therapeutic activities that reflect real-life could help their community re-integration. In addition to the physical sequelae of stroke, emotional consequences of stroke should be addressed during rehabilitation. Healthcare professionals can provide clear and locally relevant advice to facilitate aspects of community reintegration, including the return to driving and work.

Community re-integration and long-term need in the first five years after stroke: results from a national survey.

PURPOSE: Acute stroke care continues to improve but the later stroke recovery phase remains less well understood. The aim of this study was to document self-reported need in relation to stroke recovery and community re-integration among community-dwelling persons up to five years post-stroke. METHODS: A national survey was carried out in Ireland. Participants were recruited through stroke advocacy organisations and health professionals. Existing validated questionnaires were adapted with permission. The final questionnaire assessed respondents' perceptions of their community re-integration and on-going needs. RESULTS: A total of 196 stroke survivors, aged 24-89 years responded. Over 75% of respondents reported experiencing mobility, emotional, fatigue and concentration difficulties post-stroke. Emotional problems and fatigue demonstrated the highest levels of unmet need. Families provided much support with 52% of people needing help with personal care post-stroke. Forty-two per cent of respondents in a relationship felt that it was significantly affected by their stroke. In addition, 60% of respondents reported negative financial change. Only 23% of those <66 years had worked since their stroke, while 60% of drivers returned to driving. CONCLUSIONS: Stroke had a personal, social and economic impact. Emotional distress and fatigue were common and satisfaction with the help available for these problems was poor. Implications for Rehabilitation Professionals should recognise that family members provide high levels of support post-stroke while dealing with changes to personal relationships. Emotional, concentration and fatigue problems post-stroke require recognition by health professionals. A greater focus on return-to-work as part of stroke rehabilitation may be of value for patients of working age.