Carers' perspective on adapting the iSupport in New Zealand

• Published in: Alzheimer's & dementia Vol. 19; no. S19
• Main Authors: Sani, Tara P, Cheung, Gary, Peri, Kathy, Yates, Susan, Whaanga, Hēmi, Cullum, Sarah J
• Format: Journal Article
• Language: English
• Published: 01-12-2023
• ISSN: 1552-5260; 1552-5279
• DOI: 10.1002/alz.077812

Background
The World Health Organisation (WHO) has developed ‘iSupport for Dementia’, a self‐paced training for family carers of people with dementia. Empowering Dementia Carers in an iSupport Virtual Assistant (e‐DIVA) project aims to develop a website based on iSupport to support carers in Aotearoa New Zealand (NZ), Australia, Indonesia, and Vietnam. We aim to understand carers’ perspectives on iSupport to inform the NZ adaptation.
Method
We recruited primary unpaid carers through a local non‐government dementia support organisation. We included carers who were aged 18 years old or over, caring for a person living with dementia for at least six months, able to speak English and use internet for video conference. Participants were provided with the original iSupport manual to review for a month. We conducted online focus group discussions with the carers (3‐4 per group) who provided feedback on the original manual. Each group met twice for two hours. The meetings were recorded, transcribed verbatim, and analysed thematically. We then used the results of the thematic analysis to inform the development of the iSupport‐VA NZ website and supporting materials such as videos.
Result
Seven carers participated in this study. We identified common feedback which could be grouped into content, delivery, and potential use beyond immediate family carers. Based on the feedback, we split Module 1 into four sections, adding contents on optimising brain health, person‐centred care, and planning for the future. We also rearranged Modules 4 and 5 to start with information that all carers need then moving on to information more relevant to mid‐to‐late stage dementia. We also made changes in the illustration and language used. We amended the school‐like features (right‐or‐wrong approach), but kept the reflective activities. Carers also discussed the possibility of using iSupport as resources for extended family not involved in care and for care professionals.
Conclusion
Several changes were required to adapt iSupport for use in NZ. This tool has some potentials for wider use beyond unpaid family carers. A separate research with Māori carers using a similar method started in 2023.