Tired of spinning plates: an exploration of the mental health experiences. Parent carer and sibling carer anonymised interviews

Background This research addresses the mental health of adults/older family carers of adults with learning disabilities. We investigated carers’ perceptions of their mental health and their views on the accessibility, quality, and effectiveness of support.We delivered: (1) an expansive model of Public Involvement and Engagement; (2) an innovative participatory approach using creative methods to generate stories of care and mental health; (3) a public engagement and dissemination strategy that raises wider awareness of the mental health of family carers and (4) the development of learning and teaching resources for general practitioners who support family carers’ mental health.Design and MethodsThe research involved seven work packages (WPs).WP 1: The Tea and Cake Group (6 family carers and 4 people with learning disabilities) contributed to design, delivery, and analysis of each WP. WP 2: A rapid scoping review of evidence about family carers’ mental health and the support available. WP 3: The plan to co-produce a survey was rejected by family carers in favour of an online exhibition about carers’ mental health. WP 4: 28 online, in-depth interviews with 11 parent carers, 16 sibling carers and 1 partner of people with learning disabilities. WP 5: Online and in person digital storytelling workshops generated 9 parent-carer films, 4 sibling-carer films and 3 films made by people with learning disabilities and one compilation film made by 5 members of the Roma, Gypsy, and Traveller community.WP 6: A series of discussions to discuss findings with key stakeholders. WP 7: Learning and teaching materials were created for GP surgeries.Results Caregiving, driven by love, is often exploited by health and social care services which deny basic support, information, and kindness.Family carers’ struggle for services and support, over decades, is often the primary cause of mental distress. This is worsened by worrying about what will happen when they can no longer care. Family carers know what supports mental well-being but have little time to look after themselves. They do not have the support needed to take a break. They describe social services as ‘hostile’, ‘unhelpful’ or ‘totally absent’ in their lives.Many family carers see themselves as exhausted by struggling for services and support rather than depressed or anxious. Medication can help but is often offered without consideration of their caring role and/or because there is no access to alternatives. Family carers are asking for their statutory entitlements for social care support to be met, and to be offered reasonable adjustments around health and social care. They would like kindness practised in health and social services, saying even ‘feeble’ acts of kindness matter. Outputs and disseminationWe have published journal articles, blogs, magazine articles and films and presented findings at inter/national conferences.The Spinning Plates online exhibition is available here: https://carermhspinningpla.wixsite.com/spinplatesexhibitionPublic and stakeholder involvement and engagementMembers of the public, family carers and people with learning disabilities were involved in each stage of the study. The Study Steering Group included family carers. Ethical approval was sought, and subsequent amendments submitted for research by the lead university for the work package. Approvals were granted on 01/08/2022 by The University of Sheffield UREC 4058. The following amendments were approved: Amendment approved: 20/05/2024 Amendment approved: 07/12/2023 Amendment approved: 06/11/2023 Amendment approved: 04/05/2023.

研究背景 本研究聚焦成年学习障碍（learning disabilities）人士的成年照料者/老年家庭照料者的心理健康状况。本研究旨在探究照料者对自身心理健康的认知，以及他们对支持服务的可及性、质量与有效性的看法。本研究开展了以下工作：(1) 构建了一套扩展性的公众参与与投入（Public Involvement and Engagement）模式；(2) 采用创新的参与式研究方法，结合创意手段生成照料经历与心理健康相关的叙事内容；(3) 制定公众参与与传播策略，以提升社会对家庭照料者心理健康议题的广泛认知；(4) 为支持家庭照料者心理健康的全科医生（General Practitioners, GPs）开发学习与教学资源。

研究设计与方法 本研究包含7个工作包（Work Packages, WPs）。
WP 1：茶点小组由6名家庭照料者与4名成年学习障碍人士组成，全程参与各工作包的设计、实施与分析环节。
WP 2：对家庭照料者心理健康及现有支持服务的相关证据开展快速范围综述。
WP 3：原计划联合制作的调查问卷被家庭照料者否决，他们更倾向于推出一项关于照料者心理健康的线上展览。
WP 4：开展28场线上深度访谈，受访对象包括11名父母身份照料者、16名兄弟姐妹身份照料者及1名成年学习障碍人士的伴侣。
WP 5：线上与线下的数字叙事工作坊共生成9部父母照料者纪实影片、4部兄弟姐妹照料者纪实影片、3部成年学习障碍人士制作的影片，以及1部由罗姆人、吉普赛与游民社区5名成员联合制作的合集影片。
WP 6：组织系列研讨活动，与关键利益相关方分享研究发现。
WP 7：为全科医生诊所开发学习与教学材料。

研究结果 出于爱意而承担的照料工作，常被卫生与社会照护服务机构剥削——这些机构拒绝提供基础支持、信息与关怀。家庭照料者数十年来为争取服务与支持所做的抗争，往往是其心理痛苦的主要诱因；而担忧自身无法继续照料时的未来处境，则进一步加剧了这一困境。照料者清楚哪些举措有助于维护心理健康，却几乎无暇顾及自身；他们也缺乏获得喘息服务的必要支持。受访者将社会服务描述为“充满敌意”“毫无帮助”或“彻底缺位”。
多数家庭照料者认为自身的疲惫源于为服务与支持奔走抗争，而非单纯的抑郁或焦虑。药物治疗或可缓解症状，但此类服务常未兼顾其照料者身份而贸然提供，或是因为缺乏替代方案才被推荐。家庭照料者呼吁落实其在社会照护支持方面的法定权益，并要求在卫生与社会照护服务中获得合理调整。他们期盼卫生与社会照护服务机构能践行关怀之举，并称哪怕是“微不足道”的善意举动也意义重大。

成果与传播 本研究已发表期刊论文、博客文章、杂志文章及纪实影片，并在国内外学术会议上汇报了研究发现。“旋转的餐盘（Spinning Plates）”线上展览可通过以下链接访问：https://carermhspinningpla.wixsite.com/spinplatesexhibition

公众与利益相关方参与 社会公众、家庭照料者及成年学习障碍人士全程参与本研究的各个阶段。研究指导委员会包含家庭照料者代表。本研究由牵头大学为各工作包提交伦理审查申请及后续修订方案，谢菲尔德大学（The University of Sheffield）伦理审查委员会（UREC）于2022年8月1日以编号4058批准了该项研究。后续共4项修订方案先后获得批准：2024年5月20日、2023年12月7日、2023年11月6日及2023年5月4日。