Group Poetry and Quilt-Making -Creative Public Involvement Approaches to Contentious Concepts in Frailty Research.

IF 3.4 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2026-10-01 DOI:10.1111/hex.70872

William Lammons, Lily Arnold, Sarah Mcmullen, Fiona Aspinal, Samina Begum, Katherine Barrett, Kate Walters, Andrew Clegg, Stuart Mackay-Thomas, Sara Humphrey, Danielle Nimmons

{"title":"Group Poetry and Quilt-Making -Creative Public Involvement Approaches to Contentious Concepts in Frailty Research.","authors":"William Lammons, Lily Arnold, Sarah Mcmullen, Fiona Aspinal, Samina Begum, Katherine Barrett, Kate Walters, Andrew Clegg, Stuart Mackay-Thomas, Sara Humphrey, Danielle Nimmons","doi":"10.1111/hex.70872","DOIUrl":null,"url":null,"abstract":"Introduction: 'Frailty' as a concept is being increasingly integrated into healthcare, but the language around frailty is contentious and potentially stigmatising to patients. It is therefore important to understand how patients' lived experiences relate to the concept of frailty. We conducted 3 creative patient and public involvement (PPI) workshops to support the study, 'Exploring how the Electronic Frailty Index 2 (eFI2) can be best utilised in clinical practice.' Our aims for these workshops were to 1) improve our eFI2 project topic guide and data analysis 2) explore whether creative PPI can support engagement with contentious concepts like frailty, and 3) to understand how frailty can be communicated to patients.Methods: Creative PPI offers a means of addressing the shortcomings and challenges of PPI, including tokenism, accessibility, and inclusivity, by allowing patients and members of the public to contribute in different, individual, and non-discursive ways. We used group blackout poetry writing and quilt-making as creative PPI approaches to understand how patients relate to 'frailty.' We collaborated with PPI networks affiliated with the NIHR Applied Research Collaborations (ARCs) and a South Asian community organisation to recruit participants and used public collaborators to co-design and -deliver activities. We used qualitative thematic reflections to share findings from these activities.Results: Twenty-two people attended three creative PPI workshops (two blackout poetry activities and one quilt-making activity). These activities provided three types of findings: 1) the impacts of the creative PPI activities on the eFI2 research process, 2) three thematic reflections, 'difficulties with 'frailty' as a term and concept,' 'personalising 'frailty' in patient communications,' and 'time pressures and dysfunction in healthcare services;' and 3) the creative outputs (text of two poems and an image of the quilt).Conclusion: Research and healthcare professionals should work towards discussing frailty with patients in terms and concepts that reflect their experiences and understanding and consider their overall health. Future research and PPI should focus on diverse cultural perspectives on frailty.","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70872"},"PeriodicalIF":3.4000,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13573230/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health Expectations","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1111/hex.70872","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}

引用次数: 0

Abstract

Introduction: 'Frailty' as a concept is being increasingly integrated into healthcare, but the language around frailty is contentious and potentially stigmatising to patients. It is therefore important to understand how patients' lived experiences relate to the concept of frailty. We conducted 3 creative patient and public involvement (PPI) workshops to support the study, 'Exploring how the Electronic Frailty Index 2 (eFI2) can be best utilised in clinical practice.' Our aims for these workshops were to 1) improve our eFI2 project topic guide and data analysis 2) explore whether creative PPI can support engagement with contentious concepts like frailty, and 3) to understand how frailty can be communicated to patients.

Methods: Creative PPI offers a means of addressing the shortcomings and challenges of PPI, including tokenism, accessibility, and inclusivity, by allowing patients and members of the public to contribute in different, individual, and non-discursive ways. We used group blackout poetry writing and quilt-making as creative PPI approaches to understand how patients relate to 'frailty.' We collaborated with PPI networks affiliated with the NIHR Applied Research Collaborations (ARCs) and a South Asian community organisation to recruit participants and used public collaborators to co-design and -deliver activities. We used qualitative thematic reflections to share findings from these activities.

Results: Twenty-two people attended three creative PPI workshops (two blackout poetry activities and one quilt-making activity). These activities provided three types of findings: 1) the impacts of the creative PPI activities on the eFI2 research process, 2) three thematic reflections, 'difficulties with 'frailty' as a term and concept,' 'personalising 'frailty' in patient communications,' and 'time pressures and dysfunction in healthcare services;' and 3) the creative outputs (text of two poems and an image of the quilt).

Conclusion: Research and healthcare professionals should work towards discussing frailty with patients in terms and concepts that reflect their experiences and understanding and consider their overall health. Future research and PPI should focus on diverse cultural perspectives on frailty.

查看原文本刊更多论文

群体诗歌与拼布——脆弱研究中争议性概念的创造性公众参与途径。

引言：“虚弱”作为一个概念正越来越多地融入医疗保健，但围绕“虚弱”的语言是有争议的，可能会给患者带来污名化。因此，了解患者的生活经历如何与脆弱的概念联系起来是很重要的。我们举办了三次创造性的患者和公众参与（PPI）研讨会来支持这项研究，“探索如何在临床实践中最好地利用电子脆弱指数2 （eFI2）”。我们举办这些研讨会的目的是：1)改进我们的eFI2项目主题指南和数据分析；2)探索创造性PPI是否可以支持参与脆弱等有争议的概念；3)了解如何与患者沟通脆弱。方法：创造性PPI通过允许患者和公众以不同的、个人的和非话语的方式做出贡献，提供了一种解决PPI的缺点和挑战的方法，包括象征性、可及性和包容性。我们使用集体停电诗歌写作和制作被子作为创造性的PPI方法来了解患者如何与“脆弱”联系起来。我们与隶属于NIHR应用研究合作（arc）的PPI网络和一个南亚社区组织合作，招募参与者，并利用公共合作者共同设计和实施活动。我们使用定性专题反思来分享这些活动的发现。结果：22人参加了3次PPI创意工作坊（2次停电诗歌活动和1次拼布活动）。这些活动提供了三种类型的发现：1)创造性PPI活动对eFI2研究过程的影响，2)三个主题反思，““虚弱”作为术语和概念的困难”，“在患者沟通中个性化“虚弱”，以及“医疗保健服务中的时间压力和功能障碍”；3)创意输出（两首诗的文本和被子的图像）。结论：研究和卫生保健专业人员应努力与患者讨论虚弱的术语和概念，反映他们的经验和理解，并考虑他们的整体健康。未来的研究和PPI应该关注不同文化视角下的脆弱性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.