School of Psychology and Sports Science, Bangor University, Brigantia Building, Bangor LL57 2AS, UK.
School of Health Sciences, Bangor University, Fron Heluog Building, Bangor LL57 2EE, UK.
Int J Environ Res Public Health. 2023 Dec 28;21(1):47. doi: 10.3390/ijerph21010047.
'iSupport' is an online psychoeducation and skills development intervention created by the World Health Organisation to support people with dementia. This project adapted iSupport for carers of people with rare dementias (iSupport RDC), creating a new resource to support the health and wellbeing of this underserved population. The adaptation involved three phases: (1) Co-design methods to generate preliminary adaptations; (2) Analysis of phase one findings informing adaptations to iSupport to develop; iSupport RDC; (3) Post-adaptation survey to ascertain participant agreement with the adaptations in iSupport RDC. Fourteen participants contributed, resulting in 212 suggested adaptations, of which 94 (92%) were considered practical, generalisable, and aligned with iSupport principles. These adaptations encompassed content and design changes, including addressing the challenges of rare dementias (PCA, PPA, LBD, and FTD). iSupport RDC represents a significant adaptation of the WHO iSupport intervention. Its tailored nature acknowledges the unique needs of people caring for someone with a rare dementia, improving their access to specialised resources and support. By extending iSupport to this population, it contributes to advancing dementia care inclusivity and broadening the understanding of rare dementias. A feasibility study is underway to assess iSupport RDCs acceptability, with prospects for cultural adaptations to benefit carers globally.
“iSupport”是世界卫生组织创建的一个在线心理教育和技能发展干预措施,旨在为痴呆症患者提供支持。该项目为罕见痴呆症患者的照顾者(iSupport RDC)改编了 iSupport,创建了一个新的资源,以支持这一服务不足人群的健康和福祉。改编涉及三个阶段:(1)共同设计方法生成初步改编;(2)分析第一阶段的发现,为 iSupport 改编以开发 iSupport RDC;(3)改编后的调查,以确定参与者对 iSupport RDC 改编的认同。共有 14 名参与者做出了贡献,提出了 212 项建议改编,其中 94 项(92%)被认为是实用、可推广和符合 iSupport 原则的。这些改编包括内容和设计的改变,包括解决罕见痴呆症的挑战(PCA、PPA、LBD 和 FTD)。iSupport RDC 代表了对世界卫生组织 iSupport 干预措施的重大改编。其量身定制的性质承认了照顾罕见痴呆症患者的人的独特需求,改善了他们获得专业资源和支持的机会。通过将 iSupport 扩展到这一人群,它有助于推进痴呆症护理的包容性,并扩大对罕见痴呆症的理解。目前正在进行一项可行性研究,以评估 iSupport RDC 的可接受性,并有望进行文化改编,以造福全球的照顾者。