iSupport for Young Carers: An Adaptation of an e-Health Intervention for Young Dementia Carers.

Young dementia carers need to be recognised and supported in their role. They need help to understand the illness, what changes are expected and how it can affect their family member. Many support services, partly due to the COVID pandemic, have moved online and have been shown to be acceptable as they are low cost and reduce access barriers. iSupport is an evidence-informed e-health training programme developed by the World Health Organization (WHO) to support adult dementia carers. This paper reports on the co-design of an adapted version of iSupport for young carers. A theoretically driven co-design approach, drawing on the lived experiences of young dementia carers and experts who work with this target group was followed. As a result of this study iSupport for Young Carers was created. It is the first e-health intervention of its kind and aims to support the mental health, knowledge and skills of young dementia carers. In turn, it could improve the quality of the support that service providers can offer, and this can result in increased levels of identification of these young people. The work presented also provides opportunities for other countries and demographic groups to translate and adapt iSupport for Young Carers to their specific cultural context.

Effects of an e-health intervention 'iSupport' for reducing distress of dementia carers: protocol for a randomised controlled trial and feasibility study.

INTRODUCTION: In the UK, National Health Service (NHS) guidelines recommend that informal carers of people living with dementia should be offered training to help them develop care skills and manage their own physical and mental health. The WHO recommends access to affordable, proven, well-designed, online technologies for education, skills training and support for dementia carers. In response to these recommendations, this multisite randomised controlled trial (RCT) is the first study in the UK to evaluate the clinical and cost-effectiveness of an online support programme developed by the WHO called 'iSupport for dementia carers'. METHODS AND ANALYSIS: 350 informal carers (age 18+ years) living in Britain who self-identify as experiencing stress and depression will be recruited. They will be randomised to receive 'iSupport', or standardised information about caring for someone with dementia (control-comparison). Data will be collected via videoconferencing (eg, Zoom) or telephone interview at baseline, 3 months and 6 months. Intention-to-treat analysis will ascertain effectiveness in the primary outcomes (distress and depression) and combined cost, and quality-adjusted life-year data will be used to assess cost-effectiveness compared with usual care from a public sector and wider societal perspective. A mixed-methods process evaluation with a subgroup of carers in the intervention (~N=50) will explore the barriers and facilitators to implementing 'iSupport'. A non-randomised feasibility study will adapt 'iSupport' for young carers (n=38 participants, age 11-17 years). ETHICS AND DISSEMINATION: The research plan was scrutinised by National Institute for Health Research reviewers ahead of funding being awarded. Ethical approval was granted by Bangor University's School of Health and Medical Sciences Academic Ethics Committee, reference number 2021-16915. Dissemination plans include delivering events for stakeholders, social media, a project website, developing policy briefings, presenting at conferences and producing articles for open access publications. TRIAL REGISTRATION NUMBER: ISRCTN17420703.