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The public mental health revolution must privilege lived experience voices and create alliances with affected communities
World Psychiatry ( IF 73.3 ) Pub Date : 2024-01-12 , DOI: 10.1002/wps.21149
Helen L. Fisher 1
Affiliation  

The paper by Kirkbride et al in this issue of the journal1 presents a masterful and comprehensive overview of the existing evidence demonstrating associations between an array of adverse social experiences and circumstances and the development and persistence of mental ill-health. It proceeds by providing a rallying cry for a revolution to topple the dominant focus of psychiatrists and resource-allocation models by service commissioners on treating existing mental disorders. Although they are careful to acknowledge how fundamental the current approach is, they claim that it has little more to offer in terms of moving the needle on alleviation of mental distress in the population. They call for this prevailing approach to concede substantial ground to make way for primary prevention strategies that tackle the key social determinants of mental ill-health. They convincingly argue that this transformational shift is essential if we are to make any significant progress in reducing the onset and burden of mental disorders across the globe. They particularly highlight the modifiable properties of social determinants as promising targets for preventive interventions to rejuvenate the largely stagnant field of treatment innovation in psychiatry.

However, there seems to be an absence of the voices of those with lived experience of social adversity and mental health issues within this review and the roadmap it presents for improving mental health across the population and reducing inequities in mental ill-health. For far too long, the very people we are trying to help have been excluded from the spaces in which decisions are made about how to study and treat them. This simply cannot continue. Not only is it morally wrong, but it can lead to wasting precious funding resources on attempting to answer research questions that have no relevance to wider society, and to the delivery of services that are inaccessible, unacceptable or do not meet the needs of people within local communities2. In 2021, the World Health Organization published a report entitled “Nothing for us, without us”3, which specifically advocated for the inclusion of individuals and communities with first-hand experience of mental health issues and social determinants in designing policies, interventions, and research programs to enhance effectiveness and equity by ensuring that these have relevance and buy-in from the populations they are targeting, and that nobody is left behind.

Therefore, the design, delivery and evaluation of primary mental health prevention and promotion strategies and interventions should at the very least be informed by those most affected by the social and mental ill-health inequalities emphasized by Kirkbride et al, and preferably involve those with lived experience in equal partnership2, 3. Ideally, we would reach a point in the near future where those with lived experience will lead research and interventions to improve population mental health. Additional social and financial support plus a high degree of flexibility are likely to be required to ensure that people from the most marginalized sections of our society can be included in these conversations, as they often face multiple barriers to involvement. This will be crucial to avoid reproducing the systemic inequities that plague our society.

There are an increasing number of examples of successful involvement of people with lived experience in both research and clinical practice, with some even involving them throughout the whole process from design to implementation and dissemination4. This reaps benefits not only in terms of increased robustness of research and enhancing its translation into practice2, but also provides opportunities for those with lived experience to develop new skills, increase their self-esteem, and be empowered3, 4. This in turn is likely to result in positive benefits for their mental well-being and future prosperity. Moreover, funding bodies in the UK (e.g., the Wellcome Trust, UK Research and Innovation, MQ mental health charity) and around the world are realizing the importance and value of including those with lived experience of mental ill-health in developing the content of funding calls, rating applications, and sharing decision-making, by providing them with seats at the table for funding panels. These practices could easily be extended to those with lived experience of social adversity, and indeed the Violence, Abuse and Mental Health Network (www.vamhn.co.uk), one of the national mental health networks funded by UK Research and Innovation, involved trauma survivors in the design of its grant funding calls and criteria for rating applications, as well as in the selection of which applications to fund.

It is also important to engage and partner with marginalized and minoritized people from local communities and community-based organizations to create preventive interventions that are accessible, acceptable, inclusive and engaging, which will ultimately underpin their effectiveness3. As Kirkbride et al flag in their review, there is often entrenched mistrust of mental health care providers among minoritized groups (especially those from ethno-racial and LGBTQ+ communities), due to historical and recent experiences of discrimination, which together with stigma can present a major hurdle to ensuring that the services provided are actually used by those who may require them the most5, 6.

Moreover, interventions may need to be adapted to meet the specific needs of marginalized and minoritized communities – for instance located in places that can be easily reached by public transport or are familiar and non-stigmatizing (e.g., shopping centres, barber shops, primary care health centres, cafés) – and provide support with intersecting issues such as poor living conditions, debt, physical health problems, discrimination and other forms of trauma. Indeed, mental health interventions that have been adapted for people from minoritized groups have shown some benefits over more universal treatments7, and health care co-located with welfare advice services has demonstrated improved mental health and financial outcomes8.

Therefore, it will be crucial to ensure that prevention efforts are co-designed with minoritized communities and ideally delivered in collaboration with grassroots and community-based organizations, so that whatever is developed is acceptable, accessible, inclusive, and subsequently effective. Centring the voices of those with lived experience of mental health issues and social adversities, such as sexual violence, will also be essential to minimize the likelihood that the policies and interventions developed cause further harm9. Without the involvement of the people and communities affected, many of the proposed public mental health interventions are doomed to fail.

I would therefore urge academics, clinicians and policy makers to privilege the voices of those with lived experience of social adversity, mental health issues, and marginalization as they march forward into this public mental health revolution. It will be crucial for them to strive to share power equally with the communities affected when designing, implementing and evaluating these preventive strategies, if they are to develop acceptable and effective interventions, and succeed in overthrowing the current state of affairs.



中文翻译:

公共心理健康革命必须优先考虑生活经验的声音,并与受影响的社区建立联盟

Kirkbride 等人在本期杂志1上发表的论文对现有证据进行了精辟而全面的概述,证明一系列不利的社会经历和环境与精神疾病的发展和持续之间存在关联。它继续呼吁一场革命,推翻精神科医生和服务专员在治疗现有精神障碍方面的资源分配模式的主导焦点。尽管他们小心翼翼地承认当前方法的基础性,但他们声称,在缓解人们的精神困扰方面,它几乎没有什么作用。他们呼吁这种普遍做法为初级预防战略让路,以解决精神疾病的关键社会决定因素。他们令人信服地认为,如果我们要在减少全球精神障碍的发病率和负担方面取得重大进展,这种转变至关重要。他们特别强调社会决定因素的可修改特性是预防性干预的有希望的目标,以振兴基本上停滞不前的精神病学治疗创新领域。

然而,在本次审查及其提出的改善全民心理健康和减少精神疾病方面的不平等的路线图中,似乎缺乏那些经历过社会逆境和心理健康问题的人的声音。长期以来,我们试图帮助的人被排除在如何研究和治疗他们的决策空间之外。这根本无法继续下去。这不仅在道德上是错误的,而且可能导致浪费宝贵的资金资源来试图回答与更广泛的社会无关的研究问题,并导致提供无法获得、不可接受或不能满足内部人们需求的服务。当地社区2 . 2021年,世界卫生组织发布了一份题为《没有我们,我们就一无所有》的报告3,其中特别提倡让拥有心理健康问题和社会决定因素第一手经验的个人和社区参与设计政策、干预措施和旨在提高有效性和公平性的研究计划,确保这些计划具有相关性并得到其目标人群的支持,并且不让任何人掉队。

因此,初级心理健康预防和促进策略及干预措施的设计、实施和评估至少应由那些受柯克布赖德等人强调的社会和心理不健康不平等影响最严重的人了解,并最好让那些生活在贫困中的人参与其中。平等伙伴关系的经验2, 3 . 理想情况下,我们将在不久的将来达到这样一个阶段:那些有生活经验的人将领导研究和干预措施,以改善人口的心理健康。可能需要额外的社会和财政支持以及高度的灵活性,以确保来自社会最边缘化群体的人们能够参与这些对话,因为他们经常面临参与的多重障碍。这对于避免重现困扰我们社会的系统性不平等至关重要。

有越来越多具有生活经验的人成功参与研究和临床实践的例子,有的甚至让他们参与从设计到实施和传播的整个过程4。这不仅有利于提高研究的稳健性和加强其转化为实践2,而且还为那些有生活经验的人提供发展新技能、增强自尊和增强能力的机会3, 4。这反过来可能会给他们的心理健康和未来的繁荣带来积极的好处。此外,英国(例如 Wellcome Trust、UK Research and Innovation、MQ 心理健康慈善机构)和世界各地的资助机构正在认识到让那些有过心理疾病经历的人参与开发内容的重要性和价值。通过为他们提供资助小组的席位,来资助电话、评级申请和共享决策。这些做法可以很容易地扩展到那些经历过社会逆境的人,事实上,暴力、虐待和心理健康网络(www.vamhn.co.uk)是由英国研究与创新资助的国家心理健康网络之一,也参与其中创伤幸存者在设计其赠款资助呼​​吁和评级申请标准以及选择资助哪些申请时。

与当地社区和社区组织的边缘化和少数群体接触并合作也很重要,以制定易于获得、可接受、包容和参与的预防干预措施,这最终将巩固其有效性3。正如 Kirkbride 等人在他们的评论中指出的那样,由于历史和近期的歧视经历,少数群体(尤其是来自民族和 LGBTQ+ 社区的群体)往往对精神卫生保健提供者存在根深蒂固的不信任,这与耻辱一起可能会导致确保所提供的服务真正被最需要的人使用的主要障碍5, 6

此外,干预措施可能需要进行调整,以满足边缘化和少数群体社区的具体需求——例如位于公共交通可轻松到达的地方或熟悉且不带有污名化的地方(例如购物中心、理发店、初级保健中心)。保健中心、咖啡馆)——并为交叉问题提供支持,例如恶劣的生活条件、债务、身体健康问题、歧视和其他形式的创伤。事实上,针对少数群体人群的心理健康干预措施已经显示出比更普遍的治疗方法有一些好处7,并且与福利咨询服务放在同一地点的医疗保健已证明可以改善心理健康和财务状况8

因此,至关重要的是确保预防工作与少数群体社区共同设计,并最好与基层和社区组织合作实施,以便所制定的任何措施都是可以接受的、可利用的、包容性的并随后有效的。集中那些经历过心理健康问题和性暴力等社会逆境的人的声音对于最大限度地减少所制定的政策和干预措施造成进一步伤害的可能性也至关重要9。如果没有受影响的人民和社区的参与,许多拟议的公共心理健康干预措施注定会失败。

因此,我敦促学者、临床医生和政策制定者在迈向这场公共心理健康革命时,优先考虑那些经历过社会逆境、心理健康问题和边缘化的人的声音。如果他们要制定可接受且有效的干预措施,并成功推翻目前的事态,那么在设计、实施和评估这些预防战略时,努力与受影响的社区平等分享权力至关重要。

更新日期:2024-01-17
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