Background and Aims
iSupport is a skill training program for informal carers of people with dementia and was originally developed by the World Health Organisation. This program has been culturally adapted into the Chinese-Australian community and shown effectiveness in improving the quality of life and reducing stress for carers. In this project, we worked with four Chinese aged care organisations to co-design strategies to embed the ‘Usual iSupport’ (helping carers access iSupport) and the ‘Tailored iSupport’ (providing carers with tailored support) into routine care services and evaluate the comparative effectiveness of those two interventions.
What We Did
We conducted focus group and interviews with carer representatives of people with dementia and care worker representatives to codesign strategies to embed the two types of iSupport programs in routine care services. We produced and published iSupport audiobooks in Mandarin and Cantonese to improve the reach and representativeness of iSupport carers, in addition to the existing web-based iSupport and e-Book. We trained iSupport facilitators and supported them to train 144 support workers to deliver the two iSupport programs to carers in a 6-months randomised controlled trial (RCT). In total, we recruited 78 carers of people with dementia or cognitive impairment to the RCT with 40 in the tailored iSupport group and 38 in the usual iSupport group. We measured and compared the effectiveness of the two iSupport programs by collecting data from baseline, 3-month and 6-month surveys using validated outcome measure scales. We also collected quantitative data using repeated interviews with 10 carers (5 in each iSupport program) and 16 care workers to evaluate the reach of the program to carers, the adoption of the program in real care settings, the adherence to the implementation protocol and the maintenance of the two types of iSupport programs after the trial or project life.
Outcomes
In the codesign phase, participants identified strategies to implement the two types of iSupport programs. These strategies include 1) selecting iSupport facilitators within the participating organisations to lead and implement the two types of the iSupport programs; 2) training and ongoing support for the facilitators during the implementation of the project; 3) iSupport facilitators to train support workers to deliver the usual iSupport program to carers of their clients with dementia or cognitive impairment; 4) working with home care package care coordinators, day care centre coordinators and carer support group coordinators to recruit carers to the program; 5) strategies to engage carers in the tailored iSupport program; 6) strategies to sustain the program in aged care organisations.
In the 6-month randomised controlled trail, the tailored iSupport program demonstrated effects on improving carers’ mental-health-related quality of life, capabilities (or self-efficacy) in responding to changed behaviours of people with dementia and controlling upsetting thoughts of caregiving, quality of care experiences, completion of learning units of the iSupport manual and participating in carer support group activities and satisfaction with the program, compared to the usual iSupport program. There were no statistically significant differences in physical-health-related quality of life of carers, quality of life of PWD, self-efficacy in obtaining respite care services and quality care experiences of PWD between the two groups.
The evaluation of the strategies to implement the two types of iSupport programs revealed that iSupport facilitators and support workers could adhere to the implementation protocol to deliver the two types of iSupport programs. Facilitators were capable of embedding the training sessions for support workers in existing staff meetings. Support workers were able to deliver the usual iSupport program to carers in their routine contacts with their clients. iSupport facilitators demonstrated adherence to the trial protocol to deliver the tailored iSupport program to carers which include these main components: carer learning needs an assessment, tailored learning materials for carers to meet their needs, facilitator-enabled carer support group activities and facilitator-enabled access to resources and care services for carers. On the completion of the project, all participating organisations have taken action to disseminate the iSupport program in their organisations using various strategies. They also take actions to sustain the usual iSupport program. However, they identified the need to identify funding sources to sustain the tailored iSupport program.
Impact on Aged Care and Workforce
This project is a pilot trial to test the feasibility of the strategies to embed the usual iSupport program and the tailored iSupport program in four Chinese-ethno-specific aged care organisations. Findings have implications for aged care and aged care workforce. First, the tailored iSupport program can improve carers mental-health-related quality of life; therefore, enables them to stabilise home-based dementia care and maintain PWD at home for as long as possible. Second, the tailored iSupport program can improve carers capabilities of managing changed behaviours of their care recipients and controlling upsetting thoughts of caregiving; thus reduce their stresses in their daily care activities. Third, both the usual iSupport program and the tailored iSupport program can improve carers’ capabilities of obtaining respite care; therefore, reduce their care stresses and improve self-care for them. Fourth, the iSupport manual is suitable for support workers to learn and understand dementia care and partner with carers in care activities; thus, improves the workforce capabilities of delivering person-centred and high-quality dementia care to clients. In addition, embedding the iSupport programs, resources and tools in care services demonstrates aged care organisations’ commitment to evidence-based dementia care and staff development which have positive impact on the recruitment and retention of aged care workers.
Resources Developed
We have developed these resources as outlined in Table 5 via ARIIA grants and the National Foundation for Australia-China Relations, Australian Government. The access to these resources is also described in the table.
Table 5. Chinese iSupport resources
- Chinese iSupport information booklet 中文iSupport 传单
Brief instruction to access the Chinese iSupport program and resources; using QR code to access all resources
访问中文 iSupport 计划和资源的简要说明；使用二维码访问所有资源
- Web-based Chinese iSupport program 网站版iSupport课程 (NFACR)
Six modules and 29 units
完整的iSupport模块和单元
- Chinese iSupport E-books电子书(NFACR)
Six modules and 29 units
完整的iSupport模块和单元
- Chinese iSupport audiobooks有声书 (ARIIA and NFACR)
完整的iSupport模块和单元
- iSupport lite posters 精简版电子海报(NFACR)
- Asking for and accepting help / 寻求并接受帮助 - I-Support Poster-SC-01.jpg (1241×1754)
- Taking care of yourself / 照顾好您自己 - I-Support Poster-SC-02.jpg (1241×1754)
- Planning for the journey ahead / 为将来做预先规划 - I-Support Poster-SC-03.jpg (1242×1754)
- Keeping a positive attitude / 保持积极乐观的心态 - I-Support Poster-SC-04.jpg (1241×1754)
- Flexible and familiar routines / 保持愉快的生活 - I-Support Poster-SC-05.jpg (1241×1754)
- Difficulties communicating / 促进沟通 - I-Support Poster-SC-06.jpg (1241×1754)
- Asking for and accepting help / 寻求并接受帮助 - https://youtu.be/3bMe-Z8fKSk
- Taking care of yourself / 照顾好您自己 - https://youtu.be/G53n9Z1GItk
- Planning for the journey ahead / 为将来做预先规划 - https://youtu.be/Y2nktwqqEvY
- Keeping a positive attitude / 保持积极乐观的心态 - https://youtu.be/-Pl1SiYw__Y
- Flexible and familiar routines / 保持愉快的生活 - https://youtu.be/o57MKAvwOSw
- Difficulties communicating / 促进沟通 - https://youtu.be/mXWexCtfd_E
Note: ARIIA= the resources were funded by the Aged Care Research & Industry Innovation Australia; NFACR= the resources were funded by the National Foundation for Australia-China Relations, Australian Government.
In addition, we are in a progress to publish the “Chinese iSupport program Playbook” in English, simplified Chinese and traditional Chinese (Appendices 7.1, 7.2 and 7.3) which will be accessible via Flinders University Caring Future Institute (CFI) website, industry partners’ website and the Chinese iSupport program websites to guide Chinese-ethno-specific aged care organisations to implement the usual iSupport. We have also developed the “Chinese iSupport implementation manuals” (Appendix 4) for Chinese-ethno-specific aged care organisations to implement the usual iSupport and the tailored iSupport program. This resource can be obtained by contacting the chief investigate, profession Lily Xiao via email (lily.xiao@flinders.edu.au). This detailed implementation manual also includes carers’ needs assessment tools and guide to address the needs using the revised “A Brief Screen to Identify Risk Areas and Guide Interventions” and “A structured facilitator portfolio” for the iSupport facilitator to plan, implement and evaluate the tailored iSupport program.
Next Steps
Industry partners in the project identified the need to identify funding source to fund and sustain the tailored iSupport program. We will work with the industry partners to apply a grant to explore the cross-sectoral collaboration with Care Gateway to fund the tailored iSupport program. Moreover, the two types of the iSupport programs will be transferred into multilingual versions of the iSupport program to improve carers’ universal access to the programs. We will seek funding sources to undertake implementation project to translate the iSupport programs in CALD communities.
