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"Lamont-Robinson, Catherine"
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Talking Trials: An arts‐based exploration of attitudes to clinical trials amongst minority ethnic members of the South Riverside Community of Cardiff
by
Bandyopadhyay, Sudipta
,
Lamont‐Robinson, Catherine
,
Din, Mashmooma
in
Advisory groups
,
Art exhibitions
,
Attitude
2023
Introduction Clinical trials must include diverse participants to ensure the wide applicability of results. However, people from ethnic minorities are included in clinical trials at rates lower than expected given their share of the population. Working with South Riverside Community Development Centre (SRCDC), Talking Trials used public engagement to foster discussions around the underrepresentation of those from minority ethnic communities in clinical trials and to identify and address concerns surrounding trial participation. Methods We conducted three workshops with 13 co‐researchers from minority ethnic backgrounds. We explored perceptions and understanding of clinical trials alongside participatory art activities to help move away from verbocentric methods of communication. These artworks formed an exhibition that was presented to the community, prompting further discussions and engagement. Findings Co‐production workshops were an effective tool to introduce the public to trial research. With little knowledge of clinical trials at the beginning of the process, our co‐researchers formed a cohesive group, sharing initial fears and mistrust towards trials. As conversations progressed these attitudes clearly shifted. Artwork produced during the workshops was incorporated into an exhibition. Quotes and creative pieces from the group were included to reflect the themes identified. Presenting the exhibition at Riverside Festival enabled further engagement with a wider diverse community. The focus on co‐production helped build a network of individuals new to research and keen to become involved further. Conclusion Inclusive and democratic co‐production, enriched by participatory art practices, provided a powerful means of enabling our group to create new insights and foster new relationships. Projects like Talking Trials can diversify the research process itself—for example, four co‐researchers have commenced lay research partner roles on trial management groups and a lay advisory group is in development. Patient or Public Contribution Three members of staff at SRCDC were on the project delivery group and involved in the initial project design, subsequently helping to connect us with members of the Riverside community to work as co‐researchers. Two of the SRCDC staff are co‐authors of this manuscript. The project had 13 public co‐researchers guiding the direction of this research and creating the artwork displayed in the art exhibition.
Journal Article
Pitching Perspectives on Disability: Voyage Experiences of Disabled Sailors on Tall Ships
by
Williams, Val
,
Thompson, Trevor
,
Lamont-Robinson, Catherine
in
Access
,
Autobiographical literature
,
Diaries
2018
This paper explores the experiences of disabled sailors on board a tall sailing ship, adapted for accessibility. Eight disabled sailors kept audio diaries and created artwork during the voyages, as well as taking part in interviews afterwards. In reporting their accounts, we explored what it meant for participants to go to sea. We became particularly interested in embodied activities on board ship, the ways in which sailing created and highlighted new identities, and the social aspects of sailing in a team. Our account brings together some of the central concerns in Disability Studies with the perspectives of social practice theorists, and seeks to add layers of meaning to both approaches. Since this is a nautical project, the paper is structured by following the stages of going to sea, and in the words of one participant, we seek to 'join the dots between medical, academic and anecdotal knowledge'. Keywords: Disability-studies, embodiment, socio-medical, sailing, identity, social-practices
Journal Article
HeART of Stroke: randomised controlled, parallel-arm, feasibility study of a community-based arts and health intervention plus usual care compared with usual care to increase psychological well-being in people following a stroke
by
Gracey, Fergus
,
Ellis-Hill, Caroline
,
Thomas, Sarah
in
Activities of Daily Living
,
Antidepressants
,
Anxiety
2019
IntroductionPeople often experience distress following stroke due to fundamental challenges to their identity.ObjectivesTo evaluate (1) the acceptability of ‘HeART of Stroke’ (HoS), a community-based arts and health group intervention, to increase psychological well-being; and (2) the feasibility of a definitive randomised controlled trial (RCT).DesignTwo-centre, 24-month, parallel-arm RCT with qualitative and economic components. Randomisation was stratified by centre and stroke severity. Participant blinding was not possible. Outcome assessment blinding was attempted.SettingCommunity.ParticipantsCommunity-dwelling adults ≤2 years poststroke recruited via hospital clinical teams/databases or community stroke/rehabilitation teams.InterventionsArtist-facilitated arts and health group intervention (HoS) (ten 2-hour sessions over 14 weeks) plus usual care (UC) versus UC.OutcomesThe outcomes were self-reported measures of well-being, mood, capability, health-related quality of life, self-esteem and self-concept (baseline and 5 months postrandomisation). Key feasibility parameters were gathered, data collection methods were piloted, and participant interviews (n=24) explored the acceptability of the intervention and study processes.ResultsDespite a low recruitment rate (14%; 95% CI 11% to 18%), 88% of the recruitment target was met, with 29 participants randomised to HoS and 27 to UC (57% male; mean (SD) age=70 (12.1) years; time since stroke=9 (6.1) months). Follow-up data were available for 47 of 56 (84%; 95% CI 72% to 91%). Completion rates for a study-specific resource use questionnaire were 79% and 68% (National Health Service and societal perspectives). Five people declined HoS postrandomisation; of the remaining 24 who attended, 83% attended ≥6 sessions. Preliminary effect sizes for candidate primary outcomes were in the direction of benefit for the HoS arm. Participants found study processes acceptable. The intervention cost an estimated £456 per person and was well-received (no intervention-related serious adverse events were reported).ConclusionsFindings from this first community-based study of an arts and health intervention for people poststroke suggest a definitive RCT is feasible. Recruitment methods will be revised.Trial registration numberISRCTN99728983.
Journal Article
‘HeART of Stroke (HoS)’, a community-based Arts for Health group intervention to support self-confidence and psychological well-being following a stroke: protocol for a randomised controlled feasibility study
by
Jenkinson, Damian F
,
Cant, Robin P I
,
Galvin, Kathleen T
in
Activities of Daily Living
,
Affect
,
Art Therapy - economics
2015
IntroductionOver 152 000 people in the UK have strokes annually and a third experience residual disability. Low mood also affects a third of stroke survivors; yet psychological support is poor. While Arts for Health interventions have been shown to improve well-being in people with mild-to-moderate depression post-stroke, their role in helping people regain sense of self, well-being and confidence has yet to be evaluated. The main aim of this study is to explore the feasibility of conducting a pragmatic multicentre randomised controlled trial to assess the effectiveness and cost-effectiveness of an Arts for Health group intervention (‘HeART of Stroke’ (HoS)) for stroke survivors. HoS is a 10-session artist-facilitated group intervention held in the community over 14 weeks. It offers a non-judgemental, supportive environment for people to explore sense of self, potentially enhancing well-being and confidence.Methods and analysisSixty-four people, up to 2 years post-stroke, recruited via secondary care research staff or community stroke/rehabilitation teams in two UK centres will be randomised to either HoS plus usual care or usual care only. Self-reported outcomes, measured at baseline and approximately 5 months postrandomisation, will include stroke-related, well-being, mood, self-esteem, quality of life and process measures. Analyses will focus on estimating key feasibility parameters (eg, rates of recruitment, retention, intervention attendance). We will develop outcome and resource use data collection methods to inform an effectiveness and cost-effectiveness analysis in the future trial. Interviews, with a sample of participants, will explore the acceptability of the intervention and study processes, as well as experiences of the HoS group.Ethics and disseminationNational Health Service (NHS), Research and Development and University ethical approvals have been obtained. Two peer-reviewed journal publications are planned plus one service user led publication. Findings will be disseminated at key national conferences, local stakeholder events and via institutional websites.Trial registration numberISRCTN99728983.
Journal Article
Pitching perspectives on disability : voyage experiences of disabled sailors on tall ships
by
Williams, Val
,
Thompson, Trevor
,
Lamont-Robinson, Catherine
in
disability-studies
,
embodiment
,
funksjonshemmede
2018
Inneholder sammendrag
Journal Article