Camic Paul M, Harding Emma, Rossi-Harries Sam, Hayes Oliver S, Sullivan Mary Pat, Wilson Lawrence, Zimmermann Nikki, McKee-Jackson Roberta, Stott Joshua, Fox Nick C, Mummery Catherine J, Rohrer Jonathan D, Warren Jason D, Weil Rimona S, Crutch Sebastian James
Dementia Research Centre, Research Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London, United Kingdom.
School of Social Work, Faculty of Education and Professional Studies, Nipissing University, North Bay, ON, Canada.
Front Dement. 2025 Jan 8;3:1488025. doi: 10.3389/frdem.2024.1488025. eCollection 2024.
Rare forms of dementia bring unique difficulties related to age of onset, impact on family commitments, employment and finances, and also bring distinctive needs for support and care. The aim of the present study was to explore and better understand what the concept of support means for people living with different rare dementia (PLwRD) and their care-partners who attend ongoing support groups.
Representing seven types of rare dementia, source material was collected from 177 PLwRD and care-partners attending in-person support groups, with the goal of developing research-informed group poems, co-constructed by a facilitating poet. Data were analyzed through a three-step process involving linguistic analysis followed by structured-tabular thematic analysis, relational analysis, and concluded with an online survey about participation in the study.
Linguistic analysis found that co-constructed poems remained faithful to the original source material offered by participants. These results provided confidence to subsequently conduct a thematic analysis of eight completed poems, identifying 15 initial themes. A further relational analysis between themes drew on six relational forms and identified an overarching theme "A Community, Not an Intervention" that describes the process of support for this population. Survey results revealed a varied but generally positive response to writing whilst reactions to the completed poems reflected strong emotional connections that resonated with personal experience.
This is the first study that we are aware of to explore the use of co-constructed research poetry to better understand how in-person support groups provide support for people impacted by different rare dementias. The poems portray the complex, dynamic and relational aspects of how support groups provide a necessary form of connection for this population. An overarching theme characterized the support groups as a community rather than an intervention. Findings are discussed within the theoretical context of positive social identity, social health and biosocial groups. The results also demonstrate that solicited words from participants can be faithfully portrayed in poems co-created by an experienced poet. This novel finding expands methodological options for the use of research poetry in healthcare and also offers support group members further creative choices for engagement, connection and communication.
罕见形式的痴呆症在发病年龄、对家庭责任、就业和财务的影响方面带来了独特的困难，同时也带来了对支持和护理的特殊需求。本研究的目的是探索并更好地理解支持的概念对患有不同罕见痴呆症的患者（PLwRD）及其参与现有支持小组的护理伙伴意味着什么。
代表七种罕见痴呆症类型，从177名参加面对面支持小组的PLwRD及其护理伙伴那里收集了源材料，目的是创作由一位促进诗人共同构建的基于研究的小组诗歌。数据通过三步过程进行分析，包括语言分析，随后是结构化表格主题分析、关系分析，并以关于参与该研究的在线调查结束。
语言分析发现，共同构建的诗歌忠实于参与者提供的原始源材料。这些结果为随后对八首完整诗歌进行主题分析提供了信心，确定了15个初始主题。主题之间的进一步关系分析借鉴了六种关系形式，并确定了一个总体主题“一个社区，而非一种干预”，该主题描述了对这一人群的支持过程。调查结果显示，对写作的反应各不相同，但总体上是积极的，而对完成诗歌的反应反映了与个人经历产生共鸣的强烈情感联系。
据我们所知，这是第一项探索使用共同构建的研究诗歌来更好地理解面对面支持小组如何为受不同罕见痴呆症影响的人提供支持的研究。这些诗歌描绘了支持小组如何为这一人群提供必要联系形式的复杂、动态和关系方面。一个总体主题将支持小组的特征描述为一个社区而非一种干预。研究结果在积极社会认同、社会健康和生物社会群体的理论背景下进行了讨论。结果还表明，参与者提供的话语可以在由经验丰富的诗人共同创作的诗歌中得到忠实描绘。这一新颖发现扩展了在医疗保健中使用研究诗歌的方法选择，也为支持小组成员提供了更多关于参与、联系和交流的创造性选择。
