An exploration of the friendship experiences of working-age adults with aphasia

This thesis was submitted for the degree of Doctor of Philosophy and awarded by Brunel University.Aphasia impairs using and understanding language, and thus impacts on communication, identity and relationships. However, little research has investigated how people with aphasia understand friends and friendship. This Participatory Action Research (PAR) study explored how younger adults with aphasia experience friendship. Participants were 28 people with aphasia, some of whom were members of the Research Group. Data from 12 initial interviews in Phase 1 of the study led to a model of friendship and aphasia. This underpinned development of peer-led Friendship Events in Phase 2 of the study, after which 16 additional participants with aphasia were interviewed, contributing to elaboration of the model. Within the context of living with aphasia, which was central for all participants, eight inter-connected themes emerged. Friends could be anchors in a time of change and trusted stabilising influences while reconfiguring identity. Participants described the hard work of friendship, the place of communication in supporting friendship, and the challenge of equality within post-aphasia friendships. Time, humour and two-way flexibility were crucial in developing new kinds of friendship. Participants categorised a wide variety of relationships as friendship. These findings elucidate understandings of friendship loss and change as well as strategies to maintain friendship post-onset of aphasia. The study sheds new light on social connectedness and social support provided by friends, family and peers with aphasia. It emphasises the role of friendship in reconfiguring identity, and offers practical recommendations for harnessing the benefits of friends and friendship in life with aphasia. PAR methodology facilitated creation of accessible tools to support conversations and awareness-raising about friendship. The study highlights the strengths of relational methods for researching friendship and the transformative potential of doing PAR with marginalised groups such as people with aphasia

Communication partner training: re-imagining community and learning

Background: Learning is integral to Communication Partner Training (CPT) initiatives. Key theories include experiential learning and adult learning theory. The ways in which these have been applied, however, do not consistently address the needs of people with aphasia and other stakeholders in CPT. Participatory, relational, and collaborative approaches, subsumed within an expansive learning framework, which provides theoretical principles and scope for critical examination of the “who”, “why”, “what”, and “how” of learning have the potential to address these shortcomings. Aims: The objective of this paper is to critically review experiential and adult learning in CPT, subsequently examining participatory and relational approaches within the framework of expansive learning, using an example from a health-care context. Main contribution: Expansive learning is described, and its potential application examined through an example of CPT in a healthcare context and critical discussion of the literature. Conclusions: Expansive learning provides a sound theoretical and practical basis for CPT initiatives across a range of contexts, and enhances our understanding of how to achieve goals of communicative access and social participation

Experiences and support needs of older carers : a focus group study of perceptions from the voluntary and statutory sectors

OBJECTIVES: Older informal carers play a vital, growing role in supporting others with long-term health conditions but their support needs and experiences are poorly understood. The aim of this study was to explore the perceptions of volunteers and professionals of the experiences and support needs of older carers (aged 70+ years). METHODS: Thirty-five volunteers and professionals working with older carers in the voluntary and statutory sectors participated in a series of focus groups in outer London, United Kingdom. Groups were audio recorded, transcribed and subjected to thematic analysis. FINDINGS: Five main themes were identified. These included participants' perceptions of older carers' ambivalence about asking for support, their multiple losses, often restricted lives, social isolation and loneliness and concerns for their loved ones when they can no longer care. Overall, these themes are similar to those reported for adult carers in general but older carers' experiences were regarded as more challenging primarily because of their pride, attitudes to caring and because of their age, their own health was often declining making the physical aspects of caring and leaving their homes more difficult. Concerns about the future are thought to be particularly important for older carers of adult children with disabilities because they expect to be outlived by their children, although similar concerns were voiced by spouses of partners living with dementia. CONCLUSIONS: Professionals and volunteers need to consider these additional challenges for older carers. Support with accessing services, for example from the voluntary sector, is important as is future exploration of how to support older carers in planning for the future care for their loved ones is needed

The human dimensions of post-stroke homecare: experiences of older carers from diverse ethnic groups

Carers from BME and White British groups share many experiences of homecare although language and cultural difference may exacerbate common pressures and stresses. The framework for humanising care is a useful tool to evaluate aspects of homecare that are responsive to dignity and diversity. Implications for Rehabilitation Explicitly identifying, describing and valuing the human dimensions of care may support services in responding appropriately to homecare users from black minority ethnic communities as well as those from white majority groups. Unresponsive services and poor communication may lead to loss of trust with care agencies and undermine BME carers' sense of entitlement and competence in engaging with homecare services. Care worker continuity investing time in building relationships and care worker familiarity is important to many families who access social care services

Rehabilitation using virtual gaming for Hospital and hOMe-Based training for the Upper limb post Stroke (RHOMBUS II): protocol of a feasibility randomised controlled trial

Introduction Upper limb (UL) rehabilitation is most effective early after stroke, with higher doses leading to improved outcomes. For the stroke survivor, the repetition may be monotonous. For clinicians, providing a clinically meaningful level of input can be challenging. As such, time spent engaged in UL activity among subacute stroke survivors remains inadequate. Opportunities for the stroke survivor to engage with UL rehabilitation in a safe, accessible and engaging way are essential to improving UL outcomes following stroke. The NeuroBall is a non-immersive virtual reality (VR) digital system designed for stroke rehabilitation, specifically for the arm and hand. The aim of the Rehabilitation using virtual gaming for Hospital and hOMe-Based training for the Upper limb post Stroke study is to determine the safety, feasibility and acceptability of the NeuroBall as a rehabilitation intervention for the UL in subacute stroke. Methods and analysis A feasibility randomised controlled trial (RCT) will compare the NeuroBall plus usual care with usual care only, in supporting UL rehabilitation over 7 weeks. Twenty-four participants in the subacute poststroke phase will be recruited while on the inpatient or early supported discharge (ESD) stroke pathway. Sixteen participants will be randomised to the intervention group and eight to the control group. Outcomes assessed at baseline and 7 weeks include gross level of disability, arm function, spasticity, pain, fatigue and quality of life (QoL). Safety will be assessed by recording adverse events and using pain, spasticity and fatigue scores. A parallel process evaluation will assess feasibility and acceptability of the intervention. Feasibility will also be determined by assessing fidelity to the intervention. Postintervention, semistructured interviews will be used to explore acceptability with 12 participants from the intervention group, four from the usual care group and with up to nine staff involved in delivering the intervention. Ethics and dissemination This trial has ethical approval from Brunel University London’s Research Ethics Committee 25257-NHS-Oct/2020-28121-2 and the Wales Research Ethics Committee 5 Bangor (Health and Care Research Wales) REC ref: 20/WA/0347. The study is sponsored by Brunel University London. Contact: Dr Derek Healy, Chair, University Research Ethics committee ([email protected]). Trial results will be submitted for publication in peer-reviewed journals, presented at national and international conferences and distributed to people with stroke. Trial registration number ISRCTN11440079; Pre-results

Effects of antiplatelet therapy on stroke risk by brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases: subgroup analyses of the RESTART randomised, open-label trial

Background Findings from the RESTART trial suggest that starting antiplatelet therapy might reduce the risk of recurrent symptomatic intracerebral haemorrhage compared with avoiding antiplatelet therapy. Brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases (such as cerebral microbleeds) are associated with greater risks of recurrent intracerebral haemorrhage. We did subgroup analyses of the RESTART trial to explore whether these brain imaging features modify the effects of antiplatelet therapy

Effects of antiplatelet therapy after stroke due to intracerebral haemorrhage (RESTART): a randomised, open-label trial

Background: Antiplatelet therapy reduces the risk of major vascular events for people with occlusive vascular disease, although it might increase the risk of intracranial haemorrhage. Patients surviving the commonest subtype of intracranial haemorrhage, intracerebral haemorrhage, are at risk of both haemorrhagic and occlusive vascular events, but whether antiplatelet therapy can be used safely is unclear. We aimed to estimate the relative and absolute effects of antiplatelet therapy on recurrent intracerebral haemorrhage and whether this risk might exceed any reduction of occlusive vascular events. Methods: The REstart or STop Antithrombotics Randomised Trial (RESTART) was a prospective, randomised, open-label, blinded endpoint, parallel-group trial at 122 hospitals in the UK. We recruited adults (≥18 years) who were taking antithrombotic (antiplatelet or anticoagulant) therapy for the prevention of occlusive vascular disease when they developed intracerebral haemorrhage, discontinued antithrombotic therapy, and survived for 24 h. Computerised randomisation incorporating minimisation allocated participants (1:1) to start or avoid antiplatelet therapy. We followed participants for the primary outcome (recurrent symptomatic intracerebral haemorrhage) for up to 5 years. We analysed data from all randomised participants using Cox proportional hazards regression, adjusted for minimisation covariates. This trial is registered with ISRCTN (number ISRCTN71907627). Findings: Between May 22, 2013, and May 31, 2018, 537 participants were recruited a median of 76 days (IQR 29–146) after intracerebral haemorrhage onset: 268 were assigned to start and 269 (one withdrew) to avoid antiplatelet therapy. Participants were followed for a median of 2·0 years (IQR [1·0– 3·0]; completeness 99·3%). 12 (4%) of 268 participants allocated to antiplatelet therapy had recurrence of intracerebral haemorrhage compared with 23 (9%) of 268 participants allocated to avoid antiplatelet therapy (adjusted hazard ratio 0·51 [95% CI 0·25–1·03]; p=0·060). 18 (7%) participants allocated to antiplatelet therapy experienced major haemorrhagic events compared with 25 (9%) participants allocated to avoid antiplatelet therapy (0·71 [0·39–1·30]; p=0·27), and 39 [15%] participants allocated to antiplatelet therapy had major occlusive vascular events compared with 38 [14%] allocated to avoid antiplatelet therapy (1·02 [0·65–1·60]; p=0·92). Interpretation: These results exclude all but a very modest increase in the risk of recurrent intracerebral haemorrhage with antiplatelet therapy for patients on antithrombotic therapy for the prevention of occlusive vascular disease when they developed intracerebral haemorrhage. The risk of recurrent intracerebral haemorrhage is probably too small to exceed the established benefits of antiplatelet therapy for secondary prevention

Effects of antiplatelet therapy after stroke due to intracerebral haemorrhage (RESTART): a randomised, open-label trial

Background: Antiplatelet therapy reduces the risk of major vascular events for people with occlusive vascular disease, although it might increase the risk of intracranial haemorrhage. Patients surviving the commonest subtype of intracranial haemorrhage, intracerebral haemorrhage, are at risk of both haemorrhagic and occlusive vascular events, but whether antiplatelet therapy can be used safely is unclear. We aimed to estimate the relative and absolute effects of antiplatelet therapy on recurrent intracerebral haemorrhage and whether this risk might exceed any reduction of occlusive vascular events. Methods: The REstart or STop Antithrombotics Randomised Trial (RESTART) was a prospective, randomised, open-label, blinded endpoint, parallel-group trial at 122 hospitals in the UK. We recruited adults (≥18 years) who were taking antithrombotic (antiplatelet or anticoagulant) therapy for the prevention of occlusive vascular disease when they developed intracerebral haemorrhage, discontinued antithrombotic therapy, and survived for 24 h. Computerised randomisation incorporating minimisation allocated participants (1:1) to start or avoid antiplatelet therapy. We followed participants for the primary outcome (recurrent symptomatic intracerebral haemorrhage) for up to 5 years. We analysed data from all randomised participants using Cox proportional hazards regression, adjusted for minimisation covariates. This trial is registered with ISRCTN (number ISRCTN71907627). Findings: Between May 22, 2013, and May 31, 2018, 537 participants were recruited a median of 76 days (IQR 29–146) after intracerebral haemorrhage onset: 268 were assigned to start and 269 (one withdrew) to avoid antiplatelet therapy. Participants were followed for a median of 2·0 years (IQR [1·0– 3·0]; completeness 99·3%). 12 (4%) of 268 participants allocated to antiplatelet therapy had recurrence of intracerebral haemorrhage compared with 23 (9%) of 268 participants allocated to avoid antiplatelet therapy (adjusted hazard ratio 0·51 [95% CI 0·25–1·03]; p=0·060). 18 (7%) participants allocated to antiplatelet therapy experienced major haemorrhagic events compared with 25 (9%) participants allocated to avoid antiplatelet therapy (0·71 [0·39–1·30]; p=0·27), and 39 [15%] participants allocated to antiplatelet therapy had major occlusive vascular events compared with 38 [14%] allocated to avoid antiplatelet therapy (1·02 [0·65–1·60]; p=0·92). Interpretation: These results exclude all but a very modest increase in the risk of recurrent intracerebral haemorrhage with antiplatelet therapy for patients on antithrombotic therapy for the prevention of occlusive vascular disease when they developed intracerebral haemorrhage. The risk of recurrent intracerebral haemorrhage is probably too small to exceed the established benefits of antiplatelet therapy for secondary prevention