Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK.
Health Expect. 2023 Oct;26(5):2075-2088. doi: 10.1111/hex.13814. Epub 2023 Jul 17.
Approximately 20% of people with a long-term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major depressive disorder. However, there is currently no targeted psychological support for people with LTCs also experiencing SUBD. Online peer support is accessible, inexpensive and scalable, and might offer a way of bridging the gap in psychosocial care for LTC patients. This article explores the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design.
Through a co-produced participatory approach, online focus groups were completed with people with lived experience of LTCs. Focus groups were audio recorded and transcribed verbatim. Reflexive thematic analysis (TA) was conducted adopting a critical-realist approach and an inductive analysis methodology that sought to follow participants' priorities and concerns.
Ten people with a range of LTCs participated across three online focus groups, lasting an average of 95 (±10.1) min. The mean age was 57 (±11.4) years and 60% of participants identified as female. The three key emerging themes were: (1) relationship between self and outside world; (2) past experiences of peer support; and (3) philosophy and vision of peer support. Adults living with LTCs shared their past experiences of peer support and explored their perspectives on how future online peer support platforms may support their psychosocial needs.
Despite the negative impact(s) of having a long-term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co-produced and carefully designed to ensure they feel safe and not commercialised or prescriptive. Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms.
This work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co-produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer-to-peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental-physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co-produced study documents, topic guides, and informed key decision-making processes. Finally, our co-investigator with lived experience (E. A.F.) undertook the analysis and write-up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs.
大约 20%患有长期疾病（LTC）的人会出现抑郁症状（阈下抑郁[SUBD]）。患有 SUBD 的人会出现抑郁症状，但不符合重度抑郁症的诊断标准。然而，目前对于同时患有 LTC 和 SUBD 的人，并没有针对其的特定心理支持。在线同伴支持是一种可及的、廉价的、可扩展的方法，可能为填补 LTC 患者心理社会关怀的空白提供了一种途径。本文探讨了患有长期疾病的人的心理社会需求，并调查了他们对在线同伴支持干预措施的看法，以告知其未来的设计。
通过共同生产的参与式方法，与患有长期疾病的人进行了在线焦点小组讨论。焦点小组的讨论内容被录音并逐字记录。采用批判性现实主义方法进行反思性主题分析（TA），并采用归纳分析方法，旨在遵循参与者的优先事项和关注点。
共有 10 名患有各种 LTC 的人参加了三个在线焦点小组，每个小组的平均持续时间为 95（±10.1）分钟。参与者的平均年龄为 57（±11.4）岁，60%的参与者为女性。三个主要的主题是：（1）自我与外部世界的关系；（2）过去的同伴支持经验；（3）同伴支持的理念和愿景。患有长期疾病的成年人分享了他们过去的同伴支持经验，并探讨了他们对未来在线同伴支持平台如何满足他们心理社会需求的看法。
尽管长期身体健康状况对心理健康有负面影响，但身体和心理健康护理通常被视为独立的实体。对于患有 LTC 的人来说，需要采用综合方法。在线同伴支持的实施得到了支持，以弥补这一差距，但有一个明确的共识，即这些干预措施需要共同制定，并精心设计，以确保它们安全，不商业化或规定性。对这些在线空间的潜在利益和关注点的共同探讨可以塑造未来平台的理念和愿景。
这项工作是在一个更广泛的项目中进行的，该项目正在为患有 LTC 的人开发一个在线同伴支持平台。参与式、共同生产的方法是这项工作的重要组成部分。最初的愿景是由我们的患者和公众参与（PPI）小组的经验引导的，他们强调了同伴之间互动的治疗价值。焦点小组证实了这个项目的重要性和潜在益处。本文代表了 PPI 成员的观点，他们在心理-生理界面的研究和公众参与方面进行合作。一个由同样患有 LTC 的成员组成的独立的研究咨询小组（RAG）共同制定了研究文件、主题指南，并为关键决策过程提供了信息。最后，我们的共同研究者（E. A. F.）拥有长期疾病的生活经验，与同事一起进行了分析和撰写，进一步加强了我们工作的解释和共鸣。她共同担任第一作者，作为研究团队的核心成员，确保研究的进行牢牢扎根于患有长期疾病的人的生活经验。
