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"My Mother Makes Films to Cope with Her Demons": Confronting Normality "我的母亲制作电影来应对她的恶魔":面对常态
Pub Date : 2024-04-12 DOI: 10.33137/jrmh.v7i2.43070
Shabnam Sukhdev
My daughter’s mental health condition had raised several questions about her diagnosis and recovery, and I wanted to make a film about it.  I had a rich family archive which I choose to call a ‘record’ of all that was going on around me. In addition, I was carrying my own lived experience and several years of struggle with my daughter’s condition: her hospitalizations and encounters with her doctors and therapists.  I was filming her because I didn’t know how else to cope with my situation.  I couldn’t watch the 2007 footage that I had shot during her episode until ten years after.  I began questioning the ethical reasons for documenting my daughter in that state; I also wanted to investigate the circumstances that led to her diagnosis.  Would she have ever been diagnosed if we had continued to live in India?  Could the triggers be related to her being the product of a broken home?  How can family history of mental illness be controlled?  Can the impact of illness be reversed?  Is mental illness a reality or is it a construct of society?  What is Normal?  How can my daughter claim agency in charting strategies for her own wellness?  How can she participate effectively in mainstream communities overcoming the stigma and labels?  Can art truly be instrumental in coping with mental illness and facilitate the healing process?  I could address some of the questions in the film, while others continue to be a driving force in our commitment to advocacy work through film screenings and panels.[1] This has not only proven to be a very empowering experience for both my daughter and myself, but also strengthened our relationship beyond the filial bond – giving us a strong purpose outside of our immediate circle of concern.   [1] You will find on-line links to several panels since the film’s release in 2021.
我女儿的精神健康状况让我对她的诊断和康复产生了一些疑问,我想就此拍摄一部电影。 我有一个丰富的家庭档案,我把它称为我周围发生的一切的 "记录"。此外,我还带着自己的亲身经历和几年来与女儿病情的抗争:她的住院治疗以及与医生和治疗师的接触。 我之所以拍摄她,是因为我不知道该如何应对自己的处境。 直到十年后,我才得以观看 2007 年我在她发病期间拍摄的录像。 我开始质疑记录我女儿当时状态的道德理由;我还想调查导致她被诊断的情况。 如果我们继续生活在印度,她还会被诊断出来吗? 这些诱因是否与她破碎家庭的产物有关? 如何控制家族精神病史? 疾病的影响可以逆转吗? 精神疾病是现实还是社会的产物? 什么是正常? 我的女儿如何才能为自己的健康制定策略? 她怎样才能有效地参与主流社会,克服污名化和标签化? 艺术能否真正有助于应对精神疾病并促进康复过程? 我可以回答电影中的一些问题,而另一些问题将继续成为我们通过电影放映和小组讨论开展宣传工作的动力。[1] 事实证明,这不仅对我和女儿都是一次非常有力量的经历,而且还加强了我们之间的关系,超越了孝顺的纽带--让我们在直接的关注圈之外有了一个强大的目标。 [1] 您可以在网上找到自 2021 年影片上映以来举行的几次专题讨论会的链接。
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引用次数: 0
Mindful Moments for Family Caregivers 家庭护理人员的心灵时刻
Pub Date : 2024-04-12 DOI: 10.33137/jrmh.v7i2.42806
Mireille De Reland
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引用次数: 0
co-production of an intervention facilitating informal caregivers to support adults at risk of suicide and serious self-harm: a brief report 共同制定干预措施,促进非正规护理人员为有自杀和严重自残风险的成年人提供支持:简要报告
Pub Date : 2024-04-12 DOI: 10.33137/jrmh.v7i2.42803
Deborah Frances
The recovery model in mental healthcare increasingly recognises suicidal behaviour as an interpersonal issue, with caregivers seen as essential in prevention.  In the UK, as in other parts of the world, there is growing consensus in policies, guidelines and academic research towards carer involvement in a person’s mental healthcare, yet inconsistency in practice remain commonplace. In response to the theme of poor family involvement consistently identified in reports into deaths by suicide in Devon (UK), Devon Partnership NHS Trust has developed Stronger Together, a training programme for carers of suicidal adults.  The programme, co-produced with carers and service users, also includes a collaborative learning component with healthcare staff. This report explores the programme's co-production and my personal involvement.  Co-production shaped Stronger Together, aligning it with national policy and research findings.  Its co-delivery and co-learning approach uniquely addresses carers' needs and fosters staff-carer collaboration.  Learning from this initiative could help other mental health trusts foster a culture of carer collaboration, potentially improving patient safety, reducing caregiver burden and enhancing support for patients and families to reduce deaths by suicide.  It also strengthens the case for co-production of training that effectively meets the needs of participants and delivers on its outcomes.
心理保健中的康复模式越来越认识到自杀行为是一个人际关系问题,而照护者被视为预防自杀的关键。 在英国,与世界其他地区一样,政策、指南和学术研究对于照护者参与到患者的精神医疗保健中也越来越达成共识,但实践中的不一致仍然普遍存在。针对英国德文郡自杀死亡报告中一直指出的家庭参与度低这一主题,德文郡合作国民医疗服务信托基金会开发了一项针对有自杀倾向的成年人的照顾者的培训计划--"携手更强"(Stronger Together)。 该计划由照顾者和服务使用者共同制定,还包括与医护人员合作学习的内容。本报告探讨了该计划的共同制作过程以及我个人的参与情况。 共同制作塑造了 "携手更强 "计划,使其与国家政策和研究成果保持一致。 其共同实施和共同学习的方法独特地满足了照护者的需求,并促进了员工与照护者之间的合作。 从这一举措中汲取的经验可以帮助其他精神健康信托机构培养照护者合作的文化,从而改善患者安全,减轻照护者负担,加强对患者和家属的支持,减少自杀死亡。 它还加强了共同制作培训的理由,有效地满足了参与者的需求并取得了成果。
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引用次数: 0
Caregiver Mental Health: A Crucial Piece of the Recovery Puzzle 照顾者的心理健康:康复拼图中的重要一环
Pub Date : 2024-04-12 DOI: 10.33137/jrmh.v7i2.42805
Loretta Karikari
Caregiver Mental Health: A Crucial Piece of the Recovery Puzzle The role of a caregiver is multifaceted, encompassing physical, emotional, and sometimes financial responsibilities. Caregivers, whether family members or friends, find themselves navigating various emotions, uncertainties, and responsibilities. The stressors of caregiving and the emotional burden erode their own mental well-being, creating a silent crisis that is left out of the caregiver narrative. Studies reveal that caregivers grapple with anxiety, depression, and burnout. Poor mental health is well documented in the caregiving literature. One crucial avenue for support lies in psychoeducational programs tailored to caregivers. These initiatives offer practical tools to manage stress, enhance communication, and manage overall mental health. By equipping caregivers with knowledge, we empower them to navigate the challenges with greater understanding and confidence. Peer support networks represent another vital facet of caregiver well-being. Establishing communities where caregivers can share experiences, exchange coping strategies, and find solace in shared understanding is paramount. Breaking the isolation barrier can significantly alleviate the emotional burden on caregivers, creating a sense of belonging in a community that comprehends their unique struggles. Yet, the responsibility does not rest solely on caregivers and their communities. Institutions and policymakers must step forward to enact supportive measures. By addressing systemic barriers, we acknowledge the societal responsibility to nurture the mental health of those who selflessly nurture others. In nurturing the mental health of caregivers, we fortify the backbone of the recovery process, ensuring a more resilient, compassionate, and sustainable path forward.      
照顾者的心理健康:康复拼图中的重要一环 照顾者的角色是多方面的,包括身体、情感,有时还有经济责任。照顾者,无论是家人还是朋友,都会发现自己要面对各种情绪、不确定性和责任。护理的压力和情感负担侵蚀着他们自身的精神健康,造成了一种无声的危机,而这种危机在护理人员的叙述中被忽略。研究表明,护理人员面临焦虑、抑郁和职业倦怠等问题。在护理文献中,心理健康状况不佳是有据可查的。为照顾者量身定制的心理教育计划是提供支持的重要途径之一。这些计划提供了管理压力、加强沟通和管理整体心理健康的实用工具。通过向护理者传授知识,我们可以增强他们的能力,使他们能够更加理解和自信地应对挑战。同伴支持网络是护理人员福祉的另一个重要方面。建立一个社区,让护理者能够分享经验、交流应对策略,并在共同的理解中找到慰藉,这一点至关重要。打破隔离障碍可以大大减轻护理者的精神负担,让他们在一个能理解其独特挣扎的社区中产生归属感。然而,责任并不仅仅在于护理者及其社区。机构和决策者必须挺身而出,制定支持性措施。通过解决系统性障碍,我们承认社会有责任为那些无私培育他人的人提供心理健康支持。在促进护理人员心理健康的过程中,我们强化了康复过程的支柱,确保了一条更具复原力、同情心和可持续性的前进道路。
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引用次数: 0
NAMI Family-to-Family Program Focuses on Family Caregiver Needs NAMI 家庭对家庭计划关注家庭护理人员的需求
Pub Date : 2024-04-12 DOI: 10.33137/jrmh.v7i2.43072
Elaine Miller
National Alliance on Mental Illness (NAMI) Family-to-Family Program now being offered at Ontario Shores in virtual format, including how and where it was designed, its duration, the class topics, and how it helps family caregivers.  Participant testimonials are shared in the article as well as how to register for the course for those interested in taking it.
全国精神疾病联盟 (NAMI) 家庭对家庭计划目前在安大略海岸以虚拟形式提供,包括该计划的设计方式和地点、持续时间、课程主题以及如何帮助家庭照顾者。 文章还分享了参与者的感言,以及有兴趣参加该课程的人的注册方式。
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引用次数: 0
Aging Well Together: Promoting Brain Health for Aging Individuals with IDD and Their Families 一起健康老去:促进老年智障人士及其家人的大脑健康
Pub Date : 2024-04-12 DOI: 10.33137/jrmh.v7i2.43071
Serrina Philip
Adults with intellectual and developmental disabilities (IDD) have been historically excluded from participating in aging-focused research, continue to experience barriers accessing appropriate health care, and encounter distinct challenges as they age compared to people without IDD. These challenges and their effects often extend to their immediate support system, including family caregivers, including parents, siblings, and other kin. Family caregivers, often in the role of 'perpetual caregivers,' can struggle to support aging adults with IDD as they also concurrently experience the effects of their own aging, potentially hindering their ability to provide lifelong care. As parents age, the burden of care may shift to others within this support network such as siblings who, due to various constraints (e.g., geographic location, personal obligations, and financial restrictions) can also experience challenging caregiving responsibilities. Research on the mental health of family caregivers has predominantly focused either on the impact of caregiving among parents of people with IDD (and to a lesser extent on siblings) or on late-life caregivers of aging adults without IDD. This leaves a significant gap in understanding how to support caregivers during mid-late adulthood as their family member with IDD ages or as they themselves undergo age-related changes.     In this paper, we provide a brief overview of research on family caregiving of older adults with IDD, followed by a description of a national effort, The Brain Health-IDD initiative. This initiative aims to develop strategies that will support the promotion of brain health in aging adults with IDD and their family caregivers. As part of this effort, family caregivers, both siblings and parents of adults with IDD are working together with researchers and clinicians to co-design, co-deliver and evaluate a virtual education program for families.    The paper concludes by reflecting on the program's importance from the perspective of sibling and parent caregivers. This inclusive approach emphasizes the broader responsibility of supporting families navigating the challenges of disability and aging in mid-late adulthood, highlighting the need for support and awareness across all levels of care.      
有智力和发育障碍(IDD)的成年人历来被排除在以老龄化为重点的研究之外,他们在获得适当的医疗保健方面仍然面临障碍,而且与没有智力和发育障碍的人相比,他们在老龄化过程中会遇到独特的挑战。这些挑战及其影响往往会延伸到他们的直接支持系统,包括家庭照顾者,包括父母、兄弟姐妹和其他亲属。家庭照护者通常扮演着 "永久照护者 "的角色,他们在支持患有 IDD 的高龄成年人时可能会很吃力,因为他们也同时经历着自身衰老的影响,这可能会阻碍他们提供终身照护的能力。随着父母年龄的增长,照护的重担可能会转移到这个支持网络中的其他人身上,例如兄弟姐妹,由于各种限制(如地理位置、个人义务和经济限制),他们也可能会经历具有挑战性的照护责任。有关家庭照护者心理健康的研究主要集中在对智障人士父母的照护影响(其次是对兄弟姐妹的照护影响),或者是对无智障人士的老年照护者的晚年照护影响。这就为我们了解如何在中晚年时期为照顾者提供支持留下了巨大的空白,因为他们的智障家庭成员会逐渐老去,或者他们自己也会经历与年龄相关的变化。在本文中,我们将简要概述有关智障老年人家庭护理的研究,然后介绍一项全国性的工作,即 "脑健康-智障倡议"。该倡议旨在制定相关战略,以支持促进患有 IDD 的老年成人及其家庭照护者的大脑健康。作为这项工作的一部分,家庭照护者(包括智障成人的兄弟姐妹和父母)正在与研究人员和临床医生合作,共同设计、共同实施和评估一项针对家庭的虚拟教育计划。本文最后从兄弟姐妹和父母照护者的角度反思了该计划的重要性。这种包容性的方法强调了支持家庭应对中晚年残疾和老龄化挑战的更广泛责任,突出了在各级护理中提供支持和提高意识的必要性。
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引用次数: 0
Editorial: Caregiving Challenges and Opportunities in Canada 社论:加拿大护理工作的挑战与机遇
Pub Date : 2024-04-12 DOI: 10.33137/jrmh.v7i2.43068
Mary Chiu
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引用次数: 0
Who Care for our Caregivers? Building the Evidence For Change 谁来照顾我们的护理人员?建立改变的证据
Pub Date : 2024-04-12 DOI: 10.33137/jrmh.v7i2.43069
Lauren Bates
Unpaid caregivers are in distress. Almost two thirds (63%) of caregivers are at the breaking point – but feel they have no choice but to continue on (Spotlight Report: 2022). While caregivers find their role meaningful and know that they play a crucial role in sustaining our health, social and long-term care systems, they also feel invisible and unvalued, struggling with only ad hoc support. The Ontario Caregiver Coalition, a grassroots non-profit coalition of caregivers and the organizations that support them, is advocating for recognition and support for the family, friends and neighbours whose unpaid care is the hidden backbone of Ontario’s health system.
无偿照护者陷入困境。近三分之二(63%)的护理人员处于崩溃边缘,但他们认为自己别无选择,只能继续坚持下去(《聚焦报告:2022 年》)。虽然护理人员认为他们的角色很有意义,并知道他们在维持我们的健康、社会和长期护理系统方面发挥着至关重要的作用,但他们也感到自己被忽视和不被重视,只能在临时的支持下挣扎。安大略省护理者联盟(Ontario Caregiver Coalition)是一个由护理者和支持他们的组织组成的非营利性基层联盟,该联盟正在倡导对家人、朋友和邻居给予认可和支持,因为他们的无偿护理是安大略省医疗系统的隐性支柱。
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引用次数: 0
A Parental Perspective On A Diagnosis Of Schizophrenia 父母对精神分裂症诊断的看法
Pub Date : 2024-04-12 DOI: 10.33137/jrmh.v7i2.42757
Shane Christensen
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引用次数: 0
Feasibility, validity and reliability of the Dutch translation of INCRESE (INCRESE-NL) inventory to characterize mental health recovery narratives 荷兰语 INCRESE(INCRESE-NL)清单翻译的可行性、有效性和可靠性,用于描述心理健康康复叙述的特点
Pub Date : 2024-01-30 DOI: 10.33137/jrmh.v7i1.39398
Mitch Nicolaas Lases, J. Bruins, Fiona Ng, S. Rennick-Egglestone, Joy Llewellyn-Beardsley, Mike Slade, N. van Sambeek, Floortje E Scheepers, Ingrid D C van Balkom, Stynke Castelein
Objective: Methods for characterizing mental health recovery narratives are needed to enable the selection of helpful narratives which can support the recovery processes of other people. The Inventory of Characteristics of Recovery Stories (INCRESE) is an existing English-language tool to characterize recovery narratives, which is not available in Dutch. The aims of this study were to create a Dutch translation of INCRESE and to evaluate the feasibility of sustained and routine use, as well as its validity and reliability. Research design and methods: INCRESE was translated into Dutch (INCRESE-NL) using an established translation methodology. Six coders with different professional backgrounds rated 30 purposively selected Dutch narratives using INCRESE-NL and then completed an evaluation survey. Feasibility was assessed qualitatively and content validity both qualitatively and quantitatively. Gwet’s AC1 agreement coefficient was used to calculate intercoder reliability.   Results: Coders evaluated INCRESE-NL as a suitable instrument to capture important characteristics of recovery narratives with an acceptable administrative burden. The content validity index was sufficient for 5/7 sections of INCRESE-NL. Most items were found to be clear and suitable for capturing the corresponding characteristic, although some missed strict coding rules or clear descriptions, especially in section 4 on narrative characteristics. Gwet’s AC1 could be calculated for 67/77 items, of which 62 scored sufficient and five scored below threshold. Gwet’s AC1 coefficients corresponded well with the original INCRESE Fleiss Kappa values.   Conclusions: INCRESE-NL has sufficient feasibility, validity and reliability and can be used to characterize Dutch recovery narratives.
目的:我们需要对心理健康康复叙事进行特征描述的方法,以便能够选择对他人的康复过程有帮助的叙事。康复故事特征清单》(INCRESE)是一种用于描述康复叙事特征的现有英语工具,但荷兰语版本尚未推出。本研究的目的是创建 INCRESE 的荷兰语翻译版本,并评估持续和常规使用的可行性,以及其有效性和可靠性。研究设计和方法:采用既定的翻译方法将 INCRESE 翻译成荷兰语(INCRESE-NL)。六位具有不同专业背景的编码员使用 INCRESE-NL 对有针对性地选择的 30 篇荷兰语叙述进行评分,然后完成评估调查。对可行性进行了定性评估,对内容有效性进行了定性和定量评估。Gwet's AC1 一致性系数用于计算编码者之间的可靠性。 结果:编纂者认为 INCRESE-NL 是一种合适的工具,可以捕捉康复叙述的重要特征,且管理负担可接受。INCRESE-NL 的 5/7 个部分的内容效度指数都很充分。虽然有些项目没有严格的编码规则或清晰的描述,尤其是第 4 部分的叙述特征,但大多数项目都很清晰,适合捕捉相应的特征。67/77 个项目可计算出 Gwet's AC1,其中 62 个项目得分足够,5 个项目得分低于临界值。Gwet's AC1 系数与 INCRESE 最初的 Fleiss Kappa 值十分吻合。 结论:INCRESE-NLINCRESE-NL 具有充分的可行性、有效性和可靠性,可用于描述荷兰人的康复叙述。
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引用次数: 0
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Journal of recovery in mental health
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