■污名化助长了智障人士所面临的负面社会条件,它需要在多个层面上解决。为自己站起来是一种心理社会团体干预措施,旨在使智障人士在安全和支持的环境中讨论污名化的遭遇,并提高他们在管理和抵制污名化方面的自我效能。
■适应自我站立,使其适合作为数字干预措施;评估数字自我站立的可行性和可接受性,并在试点中对结果措施进行在线管理;在2019年冠状病毒大流行的背景下描述通常的做法,以告知未来的评估。
■适应工作,然后进行干预交付的单臂飞行员。
■四个第三和教育部门组织。轻度至中度智障人士,16岁以上,现有团体的成员,可以访问数字平台。
■数字站起来进行自我干预。适应了面对面的自我干预,每周四次,加上为期1个月的随访。
■为自己提供数字支持以及在基线和基线后3个月收集结果和健康经济措施的可接受性和可行性。结果是心理健康,自尊,拒绝偏见的自我效能感,对歧视和社会权力意识的反应。
■适应干预需要对会话持续时间进行更改,组大小和视频数量;否则,内容基本保持不变。指南与数字交付方法保持一致,并制作了新的小组成员手册。22名参与者提供了基线数据。干预由21名参与者(四组)开始,所有这些人都在3个月时被保留。小组主持人报告说,采取干预措施是可行的,并建议进行一些改进。干预的保真度很好,90%以上的关键组件是由促进者实施的。主持人和小组成员都报告说干预是可以接受的。集团成员报告的主观利益,包括增强信心,骄傲和知道如何处理困难的情况。所有结果指标的数字收集是可行和可接受的,在两个时间点,所有测量的数据完整性≥95%。最后,已开发出常规实践的图片,作为未来试验的干预比较器.
■试验样本很小。目前尚不清楚参与者是否愿意像往常一样随机接受治疗,或者是否可以保留12个月的随访。
■招募团体和参与者的目标人数,保留很好。对于经过一些培训和监督的小组主持人来说,为自己提供数字站立是可行且可以接受的。需要进一步优化干预措施。
■为了最大程度地提高干预措施的可接受性和范围,未来的试验可以为我自己提供改编的数字站立,可能与干预的原始面对面版本并存。
■本研究注册为ISRCTN16056848。
■该奖项由美国国家卫生与护理研究所(NIHR)公共卫生研究计划(NIHR奖编号:17/149/03)资助,并在《公共卫生研究》中全文发表。12号1.有关更多奖项信息,请参阅NIHR资助和奖励网站。
智障人士(或英国语言中的“学习障碍”)比普通人群更有可能经历不良的身心健康。污名(负面刻板印象,偏见和歧视)与较低的自尊有关,生活质量,以及精神和身体健康。努力使智障人士自己有能力挑战污名,以改善福祉,缺乏健康和自尊。2017年,我们为自己挺身而出,一项针对16岁以上轻度至中度智障人士的简短团体计划,以解决这一差距。随着这项研究的进行,由于2019年冠状病毒病大流行,面对面的会议被暂停。我们利用这个机会来评估是否可以通过基于网络的会议来表达自己的立场。我们调整了为自己挺身而出的数字交付,在智障顾问和经验丰富的小组主持人的密切投入下。然后,我们在慈善和教育环境中测试了数字版本,以评估是否可以按计划交付“数字站立”,以及小组主持人和参与者的接受程度。四组,共有22名成员,报名尝试数字站起来为我自己。一名参与者在开始为自己站起来之前退出了,其他21人一直持续到节目结束。保留和出席情况良好;与会者平均参加了五次会议中的四次。90%的核心方案要求已经完全交付,详见《数字自立手册》。技术问题是可控的,尽管主持人发现使用自立Wiki平台(用于存储和共享资源的在线平台)很困难,特别是在分享视频内容时。协调人认为达到了可接受的隐私水平,并且没有关于不当困扰的报道。所有主持人和许多小组成员都表示,他们将向他人推荐DigitalStandingforMyself。小组成员分享了该计划如何使他们受益,注意到人们对残疾的认识有所提高,为了一些增强的信心,骄傲和独立。有些人学会了如何为自己挺身而出,处理困难的情况,并为此感到自豪。通过基于网络的会议完成结果和卫生成本措施是可以接受的,数据基本上是完全完整和可用的。
UNASSIGNED: Stigma contributes to the negative social conditions persons with intellectual disabilities are exposed to, and it needs tackling at multiple levels. Standing Up for Myself is a psychosocial group intervention designed to enable individuals with intellectual disabilities to discuss stigmatising encounters in a safe and supportive setting and to increase their self-efficacy in managing and resisting stigma.
UNASSIGNED: To adapt Standing Up for Myself to make it suitable as a digital intervention; to evaluate the feasibility and acceptability of Digital Standing Up for Myself and online administration of outcome measures in a pilot; to describe usual practice in the context of the coronavirus disease 2019 pandemic to inform future evaluation.
UNASSIGNED: Adaptation work followed by a single-arm pilot of intervention delivery.
UNASSIGNED: Four third and education sector organisations. Individuals with mild-to-moderate intellectual disabilities, aged 16+, members of existing groups, with access to digital platforms.
UNASSIGNED: Digital Standing Up for Myself intervention. Adapted from face-to-face Standing Up for Myself intervention, delivered over four weekly sessions, plus a 1-month follow-up session.
UNASSIGNED: Acceptability and feasibility of delivering Digital Standing Up for Myself and of collecting outcome and health economic measures at baseline and 3 months post baseline. Outcomes are mental well-being, self-esteem, self-efficacy in rejecting prejudice, reactions to discrimination and sense of social power.
UNASSIGNED: Adaptation to the intervention required changes to session duration, group size and number of videos; otherwise, the content remained largely the same. Guidance was aligned with digital delivery methods and a new group member booklet was produced. Twenty-two participants provided baseline data. The intervention was started by 21 participants (four groups), all of whom were retained at 3 months. Group facilitators reported delivering the intervention as feasible and suggested some refinements. Fidelity of the intervention was good, with over 90% of key components observed as implemented by facilitators. Both facilitators and group members reported the intervention to be acceptable. Group members reported subjective benefits, including increased confidence, pride and knowing how to deal with difficult situations. Digital collection of all outcome measures was feasible and acceptable, with data completeness ≥ 95% for all measures at both time points. Finally, a picture of usual practice has been developed as an intervention comparator for a future
trial.
UNASSIGNED: The pilot sample was small. It remains unclear whether participants would be willing to be randomised to a treatment as usual arm or whether they could be retained for 12 months follow-up.
UNASSIGNED: The target number of groups and participants were recruited, and retention was good. It is feasible and acceptable for group facilitators with some training and supervision to deliver Digital Standing Up for Myself. Further optimisation of the intervention is warranted.
UNASSIGNED: To maximise the acceptability and reach of the intervention, a future
trial could offer the adapted Digital Standing Up for Myself, potentially alongside the original face-to-face version of the intervention.
UNASSIGNED: This
study was registered as ISRCTN16056848.
UNASSIGNED: This award was funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme (NIHR award ref: 17/149/03) and is published in full in Public Health Research; Vol. 12, No. 1. See the NIHR Funding and Awards website for further award information.
People with intellectual disabilities (or ‘learning disabilities’ in United Kingdom language) are more likely to experience poor physical and mental health than the general population. Stigma (negative stereotypes, prejudice and discrimination) has been linked to lower self-esteem, quality of life, and mental and physical ill health. Efforts to empower people with intellectual disabilities themselves to challenge stigma with a view to improving well-being, health and self-esteem are lacking. In 2017, we developed Standing Up for Myself, a brief group-based programme for people with mild-to-moderate intellectual disabilities aged 16+ to address this gap. As this
study got underway, face-to-face meetings were suspended due to the coronavirus disease 2019 pandemic. We used the opportunity to assess whether Standing Up for Myself could be delivered through web-based meetings. We adapted Standing Up for Myself for digital delivery, with close input from advisors with intellectual disabilities and experienced group facilitators. We then tested the digital version in charity and education settings to evaluate if Digital Standing Up for Myself could be delivered as planned and how acceptable it was to group facilitators and participants. Four groups, with a total of 22 members, signed up to try Digital Standing Up for Myself. One participant dropped out before starting Standing Up for Myself, and the other 21 continued until the end of the programme. Retention and attendance were good; participants on average attended four of the five sessions. Ninety per cent of the core programme requirements were fully delivered as detailed in the Digital Standing Up for Myself manual. Problems with technology were manageable, although facilitators found using the Standing Up for Myself Wiki platform (an online platform for storage and sharing of resources) difficult, particularly when sharing video content. Facilitators felt acceptable levels of privacy were achieved and there were no reports of undue distress. All facilitators and many group members said they would recommend Digital Standing Up for Myself to others. Group members shared how the programme benefitted them, noting increased awareness about disabilities, and for some increased confidence, pride and independence. Some had learnt how to stand up for themselves and manage difficult situations and took pride in this. Completing outcome and health cost measures via web-based meetings was acceptable and data were largely fully complete and useable.