Involving individuals with lived experience in research: A perspective from the Bipolar Disorder 研究 Network
Dr 凯瑟琳·戈登·史密斯, Senior 研究 Fellow at the U2电竞体育平台 with the 双相障碍研究网络(BDRN), discusses the mutual benefits of involving individuals with lived experience in research. One of these individuals, who champions the work of BDRN, is Julia Savage. Julia shares her personal experiences of bipolar disorder 和 taking part in the BDRN mood monitoring system 真实的颜色.
研究 into bipolar disorder
"Bipolar disorder is a common, severe psychiatric condition characterised by episodes of high (manic) 和 low (depressed) mood. 这些症状对个人生活的各个方面都有影响, this is complicated by the unpredictability of bipolar disorder which can vary greatly between individuals.”戈登·史密斯博士
伍斯特情绪障碍研究小组 建立了 双相障碍研究网络(BDRN) a collaboration of researchers, clinicians 和 research participants throughout the UK involved in investigating the underlying causes of bipolar disorder. BDRN has recruited the largest sample of individuals with bipolar disorder in the world (over 7000 participants).
"Our research champions are research participants who provide expert advice 和 input into our research programme. They are invaluable in publicising 和 supporting our research 和 helping to improve public awareness about bipolar disorder by contributing to public lectures, media interviews 和 documentaries. In recent years we have observed an increase in public awareness about bipolar disorder 和 individuals discussing their participation in research 和 lived experiences via various platforms has meant that accurate information about bipolar disorder 和 the importance of research is reaching an ever-wider variety of audiences."
茱莉亚是U2电竞体育BDRN研究的长期冠军之一. She has written several articles about participating in our research for both our BDRN newsletters 和 blogs for the charity 英国双相, which supports individuals with bipolar disorder 和 their families. We also ask Julia for her advice 和 feedback when we develop new research materials. Julia is also a great champion of 真实的颜色 our BDRN online mood-monitoring research tool where over 1000 individuals with bipolar disorder now answer on-line questions about their mood every week. We are extremely grateful to Julia for all her support since she first participated in our research over 15 years ago. 在这里，茱莉亚谈论她自己的经历，参与U2电竞体育的 真实的颜色 research 和 the work she has done to increase awareness of bipolar disorder in her local area:
“我第一次生病是在18岁, 大约40年前, 当时人们很少公开谈论精神疾病. 治疗仅限于药物和ECT (电休克疗法). Thankfully, medical help 和 society has moved forward since that time. I believe that research plays a vital role to find further improved treatment 和 a wider underst和ing of bipolar disorder.
I first took part in the 双相障碍研究网络(BDRN) research programme over 15 years ago 和 I have been taking part in their 真实的颜色 project for the past three years. 对我来说, 真实的颜色 有两个目的. 首先，提交的数据被BDRN用于研究. 其次, it acts as a useful tool for me to check the ups 和 downs of my mood by means of the graph, which is plotted on a weekly basis. 我的情绪什么时候变了，我一眼就能看得很清楚. 例如, I only have to see the graph peak by a small degree 和 I know immediately to take action to lower the mood back to a level that is acceptable to me. 尽管我已经学会了识别自己的诱因, 一张视觉图表证实了我情绪变化的变化. 这是管理我的双相情感障碍的有效方法. It is also possible to pinpoint the peaks 和 troughs by the date the data is submitted. This means that I can cross-reference the date with events in my diary to try to analyse why the change may have occurred. 这通常是由于一段可能只是暂时的压力期.
I have taken my graphs to appointments with my GP 和 psychiatrist to illustrate the mood swings I have experienced at a certain period of time. I also give talks at the Heart of Worcestershire College about my experiences with 真实的颜色 研究 to first-year students who are studying for a degree in Social Work. I show the students my own graphs 和 explain how the research is implemented 和 the ways in which it helps monitor my mood. "
戈登-史密斯博士要感谢所有BDRN研究的倡导者, who continue to play a vital role in research: “Without the ongoing support of all our research champions 和 participants our research simply would not be possible”.
Dr 凯瑟琳·戈登·史密斯 和 other members of the Mood Disorders 研究 Group teach 和 supervise research projects about mental illness on many courses at the U2电竞体育平台, 包括 心理学学士学位(荣誉), 助产学学士学位(荣誉), 护理学士学位(荣誉), 医师助理MSc, Paramedic Science (BSc Hons).
The research group supervise 博士学位 盟军的健康研究 和 心理学 专注于主要情绪障碍的病因和共病.
All views expressed in this blog are the Academic’s own 和 do not represent the views, policies or opinions of the U2电竞体育平台 or any of its partners.