Experiences and preferences of people with stroke and caregivers, around supports provided at the transition from hospital to home: a qualitative descriptive study.

BACKGROUND: Transitioning home from the structured hospital setting poses challenges for people with stroke (PWS) and their caregivers (CGs), as they navigate through complex uncertainties. There are gaps in our understanding of appropriate support interventions for managing the transition home. In this qualitative study, we explored the perspectives of PWS and their CGs regarding their support experiences and preferences during this period. METHODS: Between November 2022 and March 2023, and within six months of hospital discharge, audio-recorded, semi-structured interviews were conducted with PWS and CGs. All interviews were transcribed, imported into NVivo software, and analysed using reflexive thematic analysis. RESULTS: Sixteen interviews were conducted, nine with PWS and seven with CGs. Four themes relevant to their collective experiences and preferences were identified: (i) Need for tailored information-sharing, at the right time, and in the right setting; (ii) The importance of emotional support; (iii) Left in limbo, (iv) Inequity of access. Experiences depict issues such as insufficient information-sharing, communication gaps, and fragmented and inequitable care; while a multi-faceted approach is desired to ease anxiety and uncertainty, minimise delays, and optimise recovery and participation during transition. CONCLUSIONS: Our findings highlight that regardless of the discharge route, and even with formal support systems in place, PWS and families encounter challenges during the transition period. The experiences of support at this transition and the preferences of PWS and CGs during this important period highlights the need for better care co-ordination, early and ongoing emotional support, and equitable access to tailored services and support. Experiences are likely to be improved by implementing a partnership approach with improved collaboration, including joint goal-setting, between PWS, CGs, healthcare professionals and support organisations.

Transitioning to home and beyond following stroke: a prospective cohort study of outcomes and needs.

INTRODUCTION: Understanding of the needs of people with stroke at hospital discharge and in the first six-months is limited. This study aim was to profile and document the needs of people with stroke at hospital discharge to home and thereafter. METHODS: A prospective cohort study recruiting individuals with stroke, from three hospitals, who transitioned home, either directly, through rehabilitation, or with early supported discharge teams. Their outcomes (global-health, cognition, function, quality of life, needs) were described using validated questionnaires and a needs survey, at 7-10 days, and at 3-, and 6-months, post-discharge. RESULTS: 72 patients were available at hospital discharge; mean age 70 (SD 13); 61% female; median NIHSS score of 4 (IQR 0-20). 62 (86%), 54 (75%), and 45 (63%) individuals were available respectively at each data collection time-point. Perceived disability was considerable at hospital discharge (51% with mRS ≥ 3), and while it improved at 3-months, it increased thereafter (35% with mRS ≥ 3 at 6-months). Mean physical health and social functioning were "fair" at hospital discharge and ongoing; while HR-QOL, although improved over time, remained impaired at 6-months (0.69+/-0.28). At 6-months cognitive impairment was present in 40%. Unmet needs included involvement in transition planning and care decisions, with ongoing rehabilitation, information, and support needs. The median number of unmet needs at discharge to home was four (range:1-9), and three (range:1-7) at 6-months. CONCLUSION: Stroke community reintegration is challenging for people with stroke and their families, with high levels of unmet need. Profiling outcomes and unmet needs for people with stroke at hospital-to-home transition and onwards are crucial for shaping the development of effective support interventions to be delivered at this juncture. ISRCTN REGISTRATION: 02/08/2022; ISRCTN44633579.

Occupational therapists' assessment and reporting of functional cognition in stroke care.

PURPOSE: To investigate how functional cognition of people post-stroke is evaluated and reported by occupational therapists in Ireland. Functional cognition refers to the use and integration of cognitive skills for daily function. METHODS: This study used a qualitative design. Six focus groups and one individual interview were conducted with 20 occupational therapists purposively sampled for variation across different clinical grades. Data were analysed according to the Braun and Clark thematic analysis framework. RESULTS: Participants felt that assessment of functional cognition was an integral feature of occupational therapy assessment in stroke care but acknowledged that terminology used by occupational therapists for functional cognition was inconsistent. Non-standardised observational assessment was routinely used by participants. Challenges were reported with respect to written documentation of non-standardised observations. Participants reported that use of standardised cognitive assessments required considered clinical reasoning before administration. Standardised performance-based assessments were not widely implemented by participants. CONCLUSION: Occupational therapists in Ireland reported a multi-component assessment process to evaluate functional cognition post-stroke. Establishing practice guidelines for the assessment of functional cognition may be of benefit to occupational therapists working in stroke care. Further research is needed to quantify procedures in this assessment process to account for variation in practice.

The assessment of functional cognition in stroke rehabilitation is integral to occupational therapy practice.Occupational therapists described the assessment of functional cognition as a multi-component assessment drawing from three main modalities: standardised cognitive assessments; non-standardised observations; and performance-based assessments.Professional education in, and practice guidelines, for the assessment and reporting of functional cognition could be beneficial for occupational therapists in stroke care to streamline their assessment and reporting of functional cognition.

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.

Contextual factors and intentional rounding in acute hospitals: understanding what works, for whom, in what settings: a realist synthesis protocol.

Background: This study aims to understand and explain the influence of contextual factors on the implementation of Intentional Rounding in acute hospitals using the realist synthesis methodology.Falls of hospital admitted patients are one of the most frequent concerns for patient safety in the acute hospital environment. The reasons why people fall are complex. International guidelines recommend a multifactorial assessment and effective prevention and management of identified risk factors in order to reduce the number of falls. Intentional Rounding (IR) is one approach for delivering this. IR is an umbrella term, understood as a structured process whereby nurses or care staff carry out regular checks with individual patients using a standardised protocol to address such issues as positioning, pain, personal needs and placement of possessions. Methods: This study will use realist synthesis to understand what works, for whom, in what circumstances, and in what settings. Realist synthesis is a theory driven interpretive approach to evidence synthesis. It is our intention to analyse IR as an intervention, which aims to enhance patient care and safety in hospital settings. The synthesis forms part of a larger implementation study examining interventions that reduce the number of falls that occur in hospitals. Search terms will include intentional rounding, purposeful rounding, comfort rounding and hourly rounding and will encompass search terms beyond IR and falls rates to avoid limiting the synthesis. This synthesis will conform to the RAMESES (realist and meta-narrative evidence synthesis group) publication and reporting quality standards. Conclusions: The findings will inform the next phase of an implementation study on IR in acute hospital settings, to address evidence informed enablers and barriers to IR. The results will be disseminated in a peer-reviewed journal and through presentations.

Rehabilitation needs of people with brain tumours in Ireland: Protocol for a prospective, mixed methods action research study ("Brain-RESTORE").

Background: Approximately 480 people annually in Ireland are diagnosed with a primary brain tumour. Brain tumours are a heterogeneous group of conditions, varying in histopathology, location, and progression. A consistent feature is neurological impairment, which can lead to profound effects on physical and cognitive function. There is evidence that people with brain tumours can benefit from rehabilitation, but pathways are poorly described, and no best practice is defined. This leads to significant unmet need. The aim of this study is to understand the rehabilitation needs of people diagnosed with a brain tumour in Ireland, and gain insight to inform policy and practice. Methods: A prospective, mixed methods study with embedded action research will be conducted. Patients (n=122) with a new diagnosis of primary brain tumour, and optionally, a nominated carer or family member, will be recruited through a national neuro-oncology service. Rehabilitation need (Mayo-Portland Adaptability Inventory), quality of life (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Brain Cancer Module, EuroQol-5D-5L), healthcare utilisation and, optionally, carer needs (Carer Support Needs Assessment Tool) will be assessed at four, eight and 12 months post diagnosis. An embedded qualitative study will invite 30 patients and carers to a semi-structured interview to explore their lived experience of rehabilitation needs and services following brain tumour diagnosis. Finally, using an Action Research approach, healthcare professionals involved in caring for people with brain tumours will be invited to participate in co-operative inquiry groups, to reflect on emerging aggregate findings and identify actions that could be undertaken while the study is underway. Conclusions: By understanding rehabilitation need, the findings will help healthcare professionals and health service providers understand how to prioritise the supports required and encourage policy makers to adequately resource neurorehabilitation to meet the needs of people with a brain tumour diagnosis.